tag:blogger.com,1999:blog-76138753148683399252024-02-19T11:51:21.414-05:00A deaf dude's lifeI was born deaf in 1982. My blog discusses facts and my life. I plan to get stem cells in the near future and expect a 20-40db improvement in my hearing. That technology for deafness recently became available but I will wait for the pioneers to go ahead first, then I am next.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-7613875314868339925.post-23094205330147518652011-08-18T18:22:00.010-04:002011-08-25T11:18:15.410-04:00L Francis gets 20db improvement with stem cells! Mine and his audiograms included!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSXIrhDoBBZFNYelRAyhacQWKR7oG3f5D93TiUjAJfMveJL9aQt2Lie19RpyAg8Y3KG3XaNAX4X1hS5Cofy8Kt_Dl7rPCvReiteVd0dl43S6st94JJvsFVPvWwDMbtgBWZPTp5ZXI0eTI/s1600/Francisstemcells.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 229px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSXIrhDoBBZFNYelRAyhacQWKR7oG3f5D93TiUjAJfMveJL9aQt2Lie19RpyAg8Y3KG3XaNAX4X1hS5Cofy8Kt_Dl7rPCvReiteVd0dl43S6st94JJvsFVPvWwDMbtgBWZPTp5ZXI0eTI/s400/Francisstemcells.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5642595998011739426" /></a>
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<br />Here's more proof(click to enlarge) that stem cells works, much to the shock of anti stem cell loons. Yet again, they have been proven wrong and will keep denying the wonders of stem cells. Meanwhile, me and my parents grow more and more excited for each and every successful case we read about. A big thank you to Francis for sharing his amazing success story! We can conclude that stem cells is indeed capable of achieving 0db hearing as well as improving hearing at every frequency, even at the highest frequencies! His 20db improvement coincides with the average improvement other successful pioneers attained.
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<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqUEdJINdYX2Cnz3mklTVLS70T3QJJEkIkrIiJv3XEIPK4-i38h9S9dxYuTtsykDG2eXWFCdUVfqWcNgpIgTNWyZSocPOs-ylxixwgqOlhkPXM146lQ9lRapEvg_QsYKxHpxIeO0aIXFI/s1600/Audiogram_8_15a.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 360px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqUEdJINdYX2Cnz3mklTVLS70T3QJJEkIkrIiJv3XEIPK4-i38h9S9dxYuTtsykDG2eXWFCdUVfqWcNgpIgTNWyZSocPOs-ylxixwgqOlhkPXM146lQ9lRapEvg_QsYKxHpxIeO0aIXFI/s400/Audiogram_8_15a.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5642604481492611234" /></a>
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<br />This is my audiogram(click to enlarge) from 8-15-2011. It's similar to my previous audiograms give or take 5db. The bone conduction thresholds were vibrotactile. My speech awareness thresholds measured 85db HL in each ear. This means I can't even hear a shout unless it's less than a foot from my ears and forget about understanding a word! I also got new earmolds that day, hope they fit my ears snugly and comfortably.
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<br />Update: I came and they don't fit and produce feedback so I had them remade. This blog post is shorter than usual, but I will be posting more posts soon. I am still on track to get stem cells within 2-4 years once all the pioneers have gone ahead and their results are known. Technology also will be better and the average improvement will increase to 30db from today's 20db average. deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com266tag:blogger.com,1999:blog-7613875314868339925.post-46356569731866501852010-08-28T17:03:00.009-04:002010-09-21T06:27:17.253-04:00Boy born hoh/deaf improves with 600m stem cells from RNL bio!I emailed RNL bio and also talked to others who have contacted this stem cell center that treated <a href=http://deafdude1.blogspot.com/2009/11/chloe-gets-stem-cells-and-doesnt-need.html>Chloe</a> in 2009. Chloe still has nearly normal hearing in both ears a year later. The anti stem cell guys who insisted her improvement was only temporary are wrong. The antis have been <a href=http://deafdude1.blogspot.com/2009/11/deafdudes-q-and-post-also-funny-false.html>proven wrong</a> on every account and will continue to be proven wrong! Her improvement is permanent and her tinnitus is also gone!<br /><br />This boy is 10 years old and was born hoh or deaf and after only one month, his hearing significantly improved! He will continue improving for a few more months and might not even need HAs anymore! RNL bio is also treating another boy(results soon!) born hoh or deaf and they are treating two adults with hearing loss and tinnitus. Me and my friends have asked for more information and before/after audiograms. Ill let you know his db loss and how many db improvement he achieved.<br /><br />Some facts I have learned:<br /><br />1. There's one decibal improvement in hearing per 10 million stem cells. You get 600m stem cells from RNL bio, yielding an average of 60db improvement! The early pioneers usually only got a few db improvement because they did not get enough stem cells. <a href=http://deafdude1.blogspot.com/2009/11/chloe-gets-stem-cells-and-doesnt-need.html>Chloe's</a> amazing success certainly was helped by her getting 600m stem cells. I was informed by RNL bio that no one got a direct injection, not even Chloe.<br /><br />2. Those researchers successfully <a href=http://www.sacbee.com/2010/08/01/2928247/qa-stem-cell-work-moves-quickly.html>restored</a> hearing in 80% of the rats. I wouldn't be surprised if the other 20% attained some improvement but fell short of a full restoration. They mention human trials being 5-10 years away, but we know America is this far behind other countries due to the Bush ban and because so many people are anti stem cells.<br /><br />3. I will share all the information I can get. Save both of your ears for stem cells which is <a href=http://deafdude1.blogspot.com/2009/08/stem-cells-is-superior-to-cochlear.html>superior</a> to cochlear implants. There will be lots of regret by many CI wearers who wished they had waited just a bit longer. Fortunately, most aren't bilateral(two CIs) and stem cells can easily outperform CI if they get better than <a href=http://deafdude1.blogspot.com/2009/10/cochlear-implants-give-performance.html>80db</a> HL. They then will enjoy excellent hearing with a properly fitted and programmed HA in their stem cell ear.<br /><br />4. I also learned that if 600m stem cells fails to give you much of an improvement, RNL bio honestly does not recommend additional stem cells and to save your money. The cause for poor results would not be due to stem cells, but some other factor(such as defective genes) preventing stem cells from working fully. Should stem cells fail to give me much of an improvement, there's a <a href=http://www.genvec.com/download/press/2010%2008%2006%20Novartis%20Agreement_FINAL%20OUT.pdf>genetic</a> solution which ill get the chance to try in 5-10 years.<br /><br />5. I will wait out 2010, but will look into getting 600m stem cells($30k cost) as early as spring of 2011 should stem cells be an amazing success for the other pioneers that RNL bio is treating this year and I see before/after audiograms. No stem cells will be injected directly into the ear as it's too risky. Even Chloe didn't get direct injection, all 600 million autologous stem cells was administered by IV.<br /><br />6. A quick Google search shows plenty of proof that adult stem cells are safe and <a href=http://www.cogforlife.org/adultStemCellSuccess.htm>work</a> while <a href=http://www.lifenews.com/bio2845.html>embryonic</a> stem cells do nothing but cause tumors/cancer. <a href=http://www.donmargolis.com/>Don Margolis</a> has a great blog on stem cells with dozens of testimonials and facts. He even explains that many Americans are anti stem cells and believe the politician's and media's lies. They don't want to do their own research and learn the facts and truth.<br /><br />7. A Google search using keywords such as "peer reviewed study stem cells" reveals hundreds of articles. Study demonstrates safety of <a href=http://www.news-medical.net/news/20100903/Study-demonstrates-safety-of-cord-blood-stem-cell-transplantation-protocol-to-treat-neurological-conditions.aspx>cord blood stem cell</a> transplantation protocol to treat neurological conditions. Another study in University of Pennsylvania School of Medicine proves that stem cells works for <a href=http://www.medpagetoday.com/Endocrinology/Diabetes/13714>type 1 diabetes.</a> This study conducted by Dr. Richard Burt <a href=http://www.findingdulcinea.com/news/health/2009/feb/Stem-Cells-Could-Be-Used-to-Treat-MS--Study-Says.html>shows</a> adult stem cells could be used to treat MS.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com133tag:blogger.com,1999:blog-7613875314868339925.post-54261441143391548152010-03-05T23:26:00.017-05:002010-03-06T02:53:21.937-05:00I visited hearing dispenser for new earmolds. Got new audiogram. Discussion on stem cells, connexin26.<p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDhumLHxA89T1CBsb7c64iEJEIN8ZCevdvYBOwm1BmAr2XT9H1Ok7d9PkAtqijrFE6bBYSO2l2enS0Q-wKk62sKgtYoE0jJ3AC_oOEXKMLduFlqUfqxAzvFQuTMwbXmBZXKFSh1OzwXlk/s1600-h/Gil_Audiogram80a.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDhumLHxA89T1CBsb7c64iEJEIN8ZCevdvYBOwm1BmAr2XT9H1Ok7d9PkAtqijrFE6bBYSO2l2enS0Q-wKk62sKgtYoE0jJ3AC_oOEXKMLduFlqUfqxAzvFQuTMwbXmBZXKFSh1OzwXlk/s400/Gil_Audiogram80a.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5445374484432196178" /></a></p><p>This is my most recent audiogram(March 5, 2010) using Madsen conera audiometer. I was shocked to see how bad my lows were, but was told the Eartone A3 insert phone results in worse lows because it eliminates vibrotactile responses. She said the inserts are the way to go over headphones as they are more accurate, especially in the lows. She didn't test 1500Hz(probably 120db HL) nor 8000Hz(ha, won't hear 95db) She did give me a SRT(at 105db HL) with spondee words and out of 20 words, I got 2 right. Anyone know what this would translate for sentences? She also said she only sees 2 people a year with a loss as bad or worse than mine. This got me thinking about stem cells and how ill be happy with 20db improvement, but more is better. I read a study on the internet confirming this was the case. I wonder if my 60db HL at 125Hz with headphones was partially vibrotactile? I doubt the 75db HL at 250Hz is enough to feel any vibrations though. As for the mids and highs, they are exactly as I expected. This audiometer can actually go to 125db HL for some frequencies and I actually didn't hear/respond to 4000Hz at 125db HL! I don't recall hearing any whistles or high pitches but felt pressure in my eardrums. I responded anyway and this must explain my "hearing" at 2000Hz and 3000Hz. This may also explain why many people's audiograms flattens/levels at or around 120db HL, they are actually responding from "feeling" the sound as pressure in their ears(not to be confused with feeling vibrations at 125Hz and 250Hz)<br /></p><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_hnS_6oOjywT1234_Q3GjmbPhyphenhyphenzRLztVyhNGZJYm6xrTTGasQFfkbn0Mt-zOIzlMTEiY7lIl0SOaq2eacU8BnWFHyeKaceXJ0Nz2NB3kzHu1QrvHzfWPmBTsStwbNWVPRyZD9faMru4I/s1600-h/Gil_Audiogram80b.JPG"><img style="cursor:pointer; cursor:hand;width: 384px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_hnS_6oOjywT1234_Q3GjmbPhyphenhyphenzRLztVyhNGZJYm6xrTTGasQFfkbn0Mt-zOIzlMTEiY7lIl0SOaq2eacU8BnWFHyeKaceXJ0Nz2NB3kzHu1QrvHzfWPmBTsStwbNWVPRyZD9faMru4I/s400/Gil_Audiogram80b.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5445379180031468690" /></a><br />I have recreated my audiogram using audiogram maker to make it easier to read. The "S" is the attenuator limit for the Madsen conera audiometer. I was shocked to find out it can go so high in most frequencies, especially 1000Hz! I have an old audiometer at home that maxes out at 110db HL(for 500-6000Hz) The 6000Hz(105db HL) and 8000Hz(95db HL) are only 5db less than what most other audiometers max out at which is 110 and 100db HL. But if you can't hear, it doesn't matter anyway as no HA will help you at 6000Hz and 8000Hz. No HA will be of much use above 500Hz for me, that is, till I get stem cells and if it works.<br /><br /><br /><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTH2PIGuiNdOj7neEem_gCMrU8UzFLTJuZAhRdh_gf-vXR6y7bFhZZ4QkXgi-lKXVrM0-A_Dr5dXT5JtGQY24BLTSCwsgvx4q6whn0GIBPiYs7zFQ9dppjZM2uBaA9aA7_kbgo6iSUfv4/s1600-h/mysimulatedmixedloss2.JPG"><img style="cursor:pointer; cursor:hand;width: 365px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTH2PIGuiNdOj7neEem_gCMrU8UzFLTJuZAhRdh_gf-vXR6y7bFhZZ4QkXgi-lKXVrM0-A_Dr5dXT5JtGQY24BLTSCwsgvx4q6whn0GIBPiYs7zFQ9dppjZM2uBaA9aA7_kbgo6iSUfv4/s400/mysimulatedmixedloss2.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5445374657805599234" /></a></p><p>This audiogram was on my old audiometer. This time, I had proper earplugs to simulate a mixed loss. The purpose was to see where I can feel vibrotactile stimulus. No wonder some audiometers only go to 70db HL at 125Hz and 90db at 250Hz. That's because some people will start to feel vibrations from their headphones around those levels. Some people may even feel vibrations at 500Hz at very high intensities of 115 or 120db.<br /></p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiEinpGtjxoUBfQdztxqXNuejbiIo3RIF-fDr_D6-H_uNLKHfxJL32EXqdEyXi2YkgpqvOz5Z4joi5VLYqQPPynxRn7ob2Eh3CrshDwKZg-yXJpMdLYRbeJ7LIxRkPvZKP96fCAKSOzXA/s1600-h/connexin26.JPG"><img style="cursor:pointer; cursor:hand;width: 306px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiEinpGtjxoUBfQdztxqXNuejbiIo3RIF-fDr_D6-H_uNLKHfxJL32EXqdEyXi2YkgpqvOz5Z4joi5VLYqQPPynxRn7ob2Eh3CrshDwKZg-yXJpMdLYRbeJ7LIxRkPvZKP96fCAKSOzXA/s400/connexin26.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5445374574659918130" /></a></p><p>Let me show you some links to connexin26. Read those articles for yourself, understand the facts and compare audiograms. The audiogram I provided above explains the range of hearing loss one usually has due to connexin26. One can see that stem cells should still give me significent benefit even if I had a genetic hearing loss. The phenotype can be altered by environment. Stem cells won't change my genes, but it can change the phenotype and thus improve hearing. I read that people with the exact same genes can have varying audiograms, typically in the severe-profound range.<br /></p><p><a href="http://journals.tums.ac.ir/upload_files/html/208.JPG">Audiogram image.</a> <a href="http://journals.tums.ac.ir/upload_files/html/209.JPG">Another audiogram image.</a> <a href="http://www.deafgeneticsproject.org/connexin%2026.html">Good article on connexin26, 30</a> <a href="http://www.nature.com/ejhg/journal/v14/n10/fig_tab/5201670f1.html#figure-title">missense mutation audiogram.</a> <a href="http://www.soreeclinic.com/ear_center/hearing/GJB2.pdf">GJB2 mutations with audiograms.</a> <a href="http://www.egms.de/static/en/meetings/dgpp2005/05dgpp105.shtml">Different genes/mutations and HL.</a> <a href="http://www.biologia.ucr.ac.cr/profesores/AlejandroLeal/Epidemiologia%20genética/Octubre%202009/DFNM1_DFNB26-ligam-modificador.pdf"> Another article with audiograms.</a> <a href="http://www.wellsphere.com/hearing-loss-deafness-article/hot-off-the-lab-bench-research-news-on-hearing-loss-usher-syndrome/729185">Research on HL.</a> <a href="http://publishing.eur.nl/ir/repub/asset/7977/060914_Santor,+Regie+Lyn+Pastor.pdf">Long article on gene HL.</a> </p><br /><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOILtONQ0rrknNo9tu069MmNEvbNhrTTWr282QJxObspWOxf5PbJj_3bqCShxRBI3NN8y6fYxl2c-ctFLRuDfUKy2vvL9vBjLFZv1A-30zfH69ZqaSUoguDk9vTPzXEKt9R7p980BDOCc/s1600-h/even100dbisgood.JPG"><img style="cursor:pointer; cursor:hand;width: 370px; height: 360px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOILtONQ0rrknNo9tu069MmNEvbNhrTTWr282QJxObspWOxf5PbJj_3bqCShxRBI3NN8y6fYxl2c-ctFLRuDfUKy2vvL9vBjLFZv1A-30zfH69ZqaSUoguDk9vTPzXEKt9R7p980BDOCc/s400/even100dbisgood.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5445374857428085570" /></a><br /></p><p>My dad mentioned earlier today that even with a 100db HL(if stem cells gives me the above audiogram), this would be a decent improvement over what I currently have. You can see that I would outperform a CI by a mile in the low frequencies. I would match or come very close to CI in the mids and even in the highs, be only 5-10db behind, but with transposition(S symbol) I would outperform CI. 92db PTA would be about 12db worse than the average CI, but because the lows are so good and because the HAs are optimally programmed for maximum gains, youd hear more like only 5db worse than CI or so. Thus, youd score 70% on HINT-Q with hearing this "good". But id much rather have this audiogram than CI because the stem cells required to hopefully give me this hearing(or possibly better) would cost far less and be far safer with no surgery required and id preserve my residual hearing and can always get additional treatments. Id also benefit by being able to hear the lows unaided. I have discussed this in depth in previous posts. Thanks for reading! Ill keep you up to date, it may be another month before Nepsis has results of those 2 pioneers who probably already got stem cells. If their results and others are favorable, I will consider going ahead in a year or two.</p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com77tag:blogger.com,1999:blog-7613875314868339925.post-74525827953663673342010-02-15T21:39:00.004-05:002010-03-05T21:42:06.440-05:00Simulating a mixed hearing loss. Met an ASL interpreter. A little more stem cell news.It's been a while since I updated this blog. On the stem cell side, there's nothing new since Chloe, but this will soon change in the next few months. I met an ASL interpreter while shopping for food. We had an interesting discussion and she was amazed at how well I read lips and speak. Several days ago, I simulated a mixed hearing loss by wearing a homemade earplug in left ear. I made an audiogram of this vs. my control right ear.<br /><br />First, let me discuss my meeting with the sign language interpreter while I was in the store. She noticed I was wearing hearing aids and started signing to me. I spoke to her and she replied back. I think she at first thought I was HOH, not deaf. I removed my HAs and she spoke 6 inches from my ears but I heard nothing but silence. My dad says "of course you knew you wouldn't hear anything" I thought id hear a faint noise, but nope. Her voice was higher pitch and my loss is profound in that frequency range. <br /><br />She says I should learn sign language and that it's fun. I told her I wasn't interested in being an interpreter. She says I can join Deaf culture and make Deaf friends. Im not a social person and besides, I won't fit well with Deaf culture. She also said that only 2% of the deaf can speak well and read lips. Once a deaf child is taught sign language, they stop speaking and become mute. I was surprised to learn this and why couldn't they be both oral and manual? She said it was easier to sign than learn to speak and read lips when you are deaf. But she did agree that learning to speak and read lips was important. <br /><br />I thanked her and left. In the car, my dad told me he and mom spent over $5000 for me to attend speech classes to learn how to speak clearly. I learned how to read lips and talk at like 2 years old and dad said if I had learned sign language, I would have stopped speaking and reading lips and then I never would be able to speak nor read lips. My parents decided to choose the oral approach because the vast majority of people communicate this way. Hearing people don't use sign language unless they become interpreters and work with the Deaf. It's much easier to talk than bring a pen and pad and write everything down and have that person write too.<br /><br />They also spent thousands on the best HAs. This is very important that you get as much access to sounds as possible! Too many people have the wrong HAs or HAs with insufficient volume/gain and they aren't hearing as loud/well as they should. There are people with better hearing than me who did worse than me because of this. In the last 5 years with the CI hype, doctors/audiologists are keen to push CI on deaf people, especially children. Many of those deaf people could have done just fine with HAs as I did. The original purpose of CI was to give access to sounds when you were 100% deaf. CI technology of course has improved, but so has HA technology! I have discussed CIs in detail in my previous posts.<br /><br />I now understand why surgeons are reluctant to implant those who aren't taking an oral only approach. They do much better with CI if they learn how to speak and read lips. You don't need sounds to learn sign language. It's possible to be both oral and manual with HAs/CI, but you won't be as good with lipreading, speaking and understanding speech. My parents put their effort in an oral only approach and I wasn't interested in sign language as a kid, I certainly am not interested now. Many who start learning sign language then get CI simply drop the sign language and become oral only as they can hear some speech and find the oral route easier. Those who aren't given enough effort to learn the oral route with CIs then find their CIs useless as they grow and simply stop wearing their CI(s).<br /><br />On the stem cell side, I learned that 6 people(excluding 20+ anecdotes) for the year 2009 pioneered in stem cells and 2 got a huge improvement(one of them is Chloe, 70db improvement) two got a moderate improvement(25db?) and two got little(10db?) or no improvement. Ill have to find out why not everyone gets an improvement, but then not everyone improves with CI and not every reason is known! Sometimes, it's just "bad luck" that CI or stem cells fails to help. There will be several other options(CI isn't one of them) should stem cells fail for me.<br /><br />I also learned that the stem cell clinics have begun directly injecting stem cells thru the eardrum and into the middle ear. They viewed this as too risky last year. I guess technology advanced to the point where the risks are less and the benefits greater. Ive been in contact with stem cell centers and learned that the IV route gives you 20 million stem cells each treatment for ~5db improvement per treatment. The direct injection route gives you less than 1cc, less than a million stem cells, yet may give you ten times the improvement! Far, far more stem cells end up in your cochlea because they were injected directly into your ear and don't have to migrate great distances. The IV route does allow a tiny amount of stem cells to migrate to your cochlea. The stem cell labs in China give 4-6 treatments by IV and you get an average of 20db improvement. When they start doing direct injection, we could be seeing ~50db improvement with 1 treatment and a restoration with 2 or 3 treatments! To my knowlege, the best stem cells can get your hearing is to 20-25db HL and this was shown in animals, including birds who can naturally restore their hearing. But we will see in due time if any humans are getting to 15db, 10db, even 0db HL with stem cells. This would be amazing!<br /><br />I probably won't get stem cells this year but there's a chance I will in 2011 depending on results of the pioneers. I am particularly interested in results done by direct injection and learning about the "unknown" risks. Im worried about losing some or all my residual hearing(which is why I won't touch CI, among other reasons) id have to see if direct injection of stem cells can cause any damage to residual hearing should it not work, would you end up worse off or the same? I might decide to only risk one ear with direct injection(plus get the IV) if any of the pioneers are experiencing complications going this riskier route. My parents and friends do say it's a good idea to wait out 2010 and learn from their results and I can decide what to do. Id have to weigh the risks vs. rewards of IV vs. direct injection. I should be finding out results from those 2 pioneers in a Mexican stem cell clinic in about 2 months. Ill try to get as much information as possible, including before/after audiograms.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6FBF17CSwoV-Jd3DvPSqsO2eplJpVz8l6HeoWqApjN7wL958eSzipt4tG7xDZ6MvbfDfAidrem3X9Me1l7Iu-l_IlqCJ38Ch6ple2BVnYFQoMPob6z-3_-NW6h5oXizNP4DGF2O6Hqe0/s1600-h/mysimulatedmixedloss.JPG"><img style="cursor:pointer; cursor:hand;width: 340px; height: 360px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6FBF17CSwoV-Jd3DvPSqsO2eplJpVz8l6HeoWqApjN7wL958eSzipt4tG7xDZ6MvbfDfAidrem3X9Me1l7Iu-l_IlqCJ38Ch6ple2BVnYFQoMPob6z-3_-NW6h5oXizNP4DGF2O6Hqe0/s400/mysimulatedmixedloss.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5438702956152619794" /></a><br /><br />This is my simulated mixed hearing loss. Ill try again with proper earplugs and reconfirm when it becomes vibrotactile. When I hold the earphones, I can feel vibrations at 55db, 75db, 100db, at 125, 250, 500Hz. Can't feel any vibrations at 110db at 750Hz and up. Wearing the earphones, I need 15db more to feel the vibrations around my ears. I read a website that says vibrotactile responses can be felt up to 500Hz. <br /><br />Thanks for your comment guys! Someone mentioned connexin 26, I will discuss this in a new post with tons of facts! Nepsis is the stem cell center in Mexico, they may be treating at least 2 people and several more have signed up at that center. Should Nepsis be successful in treating several people, I am getting it done there, possibly next year. Chloe was deaf for 3 years and was recommended a CI, but stem cells restored most of her hearing. I am getting tired of the anti stem cell guys downplaying or dismissing her amazing success. Yes, stem cells isn't cheap but compared to CI, stem cells is a bargain plus stem cells is better across the board.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com84tag:blogger.com,1999:blog-7613875314868339925.post-81398387803912009552009-12-10T23:47:00.005-05:002009-12-21T12:51:58.312-05:00Some people are so pro-CI they are biased! I see both sides!I posted on a <a href="http://www.alldeaf.com/hearing-aids-cochlear-implants/73025-another-ci-failure-story-no-improvement-speech.html">deaf forum(link)</a> of someone who experienced a negative CI result.<br />(Note: if you are very pro-CI and refuse to hear both sides to CI, including any bad results, don't read this blog.) Update: Some of you went ahead and read this blog anyway and decided to insult me. I did warn you that this post would anger those who are biased towards CI.<br /><br />She got CI several years ago. It helped somewhat for environmental sounds but no improvement in speech. Her CI started to malfunction after 5 years with the electrodes going bad. This caused headaches and electric shocks inside her head. She doesn't want another CI and realizes she can be a vet without being able to hear. She stands correct that people should look at both sides of CI. I always saw both sides and decided CI isn't for me because I don't want to give up my residual hearing like she did. For those who have gotten or plan to get CI, good luck with your choice.<br /><br />-------------------her story below---------------------<br /><br />Actually, no. I became profoundly deaf at 4, hearing aides worked for me for a while, I could, like you, hear airplanes and cars, and even tell when someone was talking, and sometimes I could pick up a little bit of what they were saying. I spoke fairly well, and then I got a CI. at first, it worked, not perfectly, but i could hear more things, cats meowing, birds tweeting, and that was wonderful, then i started to realize... my speech hadn't gotten better (and yes, i went to speech therapy and CI therapy) my hearing hadnt improved past that point, i still struggled to understand what people were saying, i couldn't tell the difference between a male's voice or a female's voice, i could only understand simple words like my name, no, mom, dad, hello, things like that without looking at the person's lips, and etc. about 5 years after i got the CI, i stopped wearing it, and I'm glad I did. I had started to get frequent headaches while wearing it, and I would get electrical charges more frequently than normal. People have so many positive things to say about CI's, but you should look @ both sides. I, also, want to be a vet, and it's possible even without a CI.<br /><br />-----------------The responses I got?-------------------<br />Note that the responses are copyright by the respective authors which were posted on a <a href="http://www.alldeaf.com/hearing-aids-cochlear-implants/73025-another-ci-failure-story-no-improvement-speech.html">deaf forum(link)</a> I had kept their biased pro-CI responses anonymous so others won't insult them. But if they insist on making their responses known, fine then. Freedom of speech gives me the right to disagree with what other people say. If you can't handle anyone disagreeing with you, then don't read/respond anything you don't want to hear about.<br /><br />1. Please just quit it. I can't get one, so it does not affect me, but it makes a lot of people here sad and angry.(sorry, but in the real world, no surgery has a 100% chance of success)<br /><br />2. it's just getting really old at your negativity towards cochlear implants(you only see one side to CI: the positives)<br /><br />3. To me it just another Hearsay post.(says the biased pro-CI guy)<br /><br />4. The only thing your ill-informed assessment of "CI failure" -- based on some uncited, out-of-context paragraph about someone's experience (either real or imagined) -- exposes is your own motivation to tear down options other than that which you (or your parents) have chosen for your situation.(it's real and the only motivation is to eliminate one sided bias.)<br /><br />5. Oh you have all the right in the world...but you rarely post ANYTHING good about CI...and we get that YOU do not like CI but for others who are maybe looking into it and are new users you paint a very bad picture for them, and that's not very fair is it.(I have posted alot of good about CI in my blog)<br /><br />6. I am sorry to hear she have a bad experience with CI, but I don't see it as a reason to post it as a case why one should go against CIs. It's completely one=sided burdened on the user since it was malfunctioning.(I never said anything about going against CI)<br /><br />7. Then her CI malfunctioned and she chose not to fix it. Totally her right, and decison.(she did not gain speech benefit anyway from the start)<br /><br />8. Exactly. I don't know that I would consider that a failure story. To me a failure story is when there is zero benefit.(for her, it's a failure. For others it's a success)<br /><br />9. hum bug. deafdude, seriously, get a life and quit bringing in non-sourced garbage to these boards. geez!(I have the right to eliminate one sided CI bias)<br /><br />10. He need to stop being negative toward CI and bring up the threads. He couldn't stop it.(ironic since you used to be negative to CI. Now you are biased to the extreme in the opposite direction. I am unbiased)<br /><br />11. But I'll tell you this. A person who is putting all their hope into a device to solve their problems are setting themselves up for failure.(exactly!)<br /><br />12. My coworker has a wife whose CI doesnt work at all for her. She got implanted 3 years ago and she hears absulotely nothing with it. He says that she hates it so much and regrets getting it.(if she wasn't informed of the risks, she can sue. If she was informed, she made her own choice and accepted the risks.)<br /><br />-----------------------------------------------<br /><br />[QUOTE]If my husband had thought for one moment that he would be living the rest of his life with vertigo and that several times a day his whole world would spin, I highly doubt he would have gone through with implantation. Yes, he is in the minority of those who have had difficulties with implantation. Yes, he is now able to hear. Is it worth it to him? NO He was able to function quite well in life prior to implantation, and now his entire personality has changed and it has taken its toll on the entire family.<br /><br />I wish someone had said, "hey, there is a possibility that such and such could happen if you get implanted". Maybe he would have made a different decision, one that he won't regret for the rest of his life.[/QUOTE]<br /><br />This is why posts like his should be taken seriously and factored into the CI risk. All im trying to say is that CI is not 100% risk free like some people here think. I respect those who make the difficult choice, but they must be informed first.<br /><br />[QUOTE]But, how can a parent make an informed decision regarding any aspect of their child's future without having the information necessary to weigh pros and cons? Not having complete information is having negative affects onthe language development and educational acheivement of numerous deaf children. To simply ignore the negative rather than investigate it and weigh it against the postive is nothing more than the avoidance of reality.[/QUOTE]<br /><br />This is what I feel is going on. You guys are getting mad and ignoring the negative im posting about.<br /><br />[QUOTE]I am so sorry about your husband's complications, but it is a perfect example of candidates not being suppplied with all of the information they need to make an informed choice.[/QUOTE]<br /><br />This is why I am supplying the necessary information.<br /><br />[QUOTE]OMG I cant believe ANY parent would choose to ignore the negative aspect of implanting a child. To ME right there would be considered child abuse. IMHO you cannot implant without making an informed decision. Informed means not just the positive but the negatives as well.<br /><br />For example, if I had a child that needed a artificial leg, I would not just say oh go ahead and do it as the positives will outweigh the negatives so I dont need to hear them! My goodness, that right there would be saying I dont wanna know how to take care of it if something goes wrong. <br /><br />I know for a fact artificial legs cause soreness,chafing and many other things. I would wanna know that before getting one for my child. <br /><br />A CI is a much bigger issue than an artificial leg! I for one would consider myself negligent if I didnt find out any negative effects![/QUOTE]<br /><br />couldn't agree more.<br /><br />[QUOTE]I believe in cochlear implants. I have them. I only post on the part of alldeaf about hearing aids and cochlear implants. Lately all the postings have been negative. My cochlear implant is not negative. I knew all the negative before I set foot in the hostipal. I made my choice. I have discussed this with others and guess what - they also researched and made clear choices. Yes, I believe in a families right to implant a child. <br /><br />Research and statments can be twisted and turned to fit our purpose.[/QUOTE]<br /><br />On the flip side, today, all posts have been positive about CI. This is also bias. I am happy that her CI worked out for her.<br /><br />[QUOTE]All aspects - positive and negative - must be taken into account in order for anybody to make an educated decision.[/QUOTE]<br /><br />Bingo. This is all im saying and stating my point in this thread.<br /><br />[QUOTE]Those parents who DO look at the positives and negatives of getting a CI still have to make the decision. Since I believe most decisions have turned out good and what can you say about the ones that "failed"? Sad, isn't it?[/QUOTE]<br /><br />Id let the child decide himself when he's older. Adults can decide for themselves once they put their bias aside and read both good and bad CI experiences and make an informed choice. I will respect whatever choice they make.<br /><br />[QUOTE]I agree with you, Bear. It would be tantamount to child abuse if one ignores all the negative aspects of implanting a child.[/QUOTE]<br /><br />Without getting into a lengthy debate, ill just say this is a difficult choice. I would never force CI on my child, but I won't tell other parents what to do except not to ignore the positive aspects to CI [B]as well as[/B] the negative aspects.<br /><br />[QUOTE]I am total speechless when anyone choose to ignore any negative/disadvantages issues to consider positive only. *goose bumps* I MUST know about positive and negative before I make a decision. I also MUSt know how many % chance to positive and negative as well...[/QUOTE]<br /><br />Everyone has the right to know this. No one should be getting mad when the negatives are being discussed or you won't be able to make an informed decision if you think CI is 100% positive success.<br /><br />[QUOTE]jag, the vertigo is similar to that of being drunk. In fact, it is basically the same thing. When you are intoxicated from alcohol, you become dizzy due to the change in fluid level within the inner ear. When you sober up, your fluid level returns to normal. With the cochlear implant surgery, the doctor cuts into the inner ear, thus changing the liquid level PERMANENTLY. So it is like you are constantly drunk. My husband says it "takes the fun out of drinking" lol<br /><br />I understand that life is full of risks, but the doctor really downplayed the risks. When those risks were presented to my husband, it was like "these things happen so seldom, you really don't have to worry about it". I feel that was rather deceptive now that he has to "worry about it" for the rest of his life.[/QUOTE]<br /><br />It is unfair to anyone to be fed only the positive aspects and not be properly informed of the risks. I am seeing this happen for many other elective surgeries, including lasik. They are surprised and upset to experience a complication. If they were properly informed, they would expect a % chance of complication and accept this.<br /><br />[QUOTE]yea,I'm aware of that ,however, I will take the risk[/QUOTE]<br /><br />Since you are aware of the risks and you choose CI, you are making an informed choice and accepting both pros and cons to CI. Good luck, hope all goes well.<br /><br />[QUOTE]Yes I believe in people being notified of all the risks with the surgery, particularly if they are at higher risk for something than other candidates. <br /><br />I think it can still be hard though if you are one of the small minority of people whose risks eventuate into reality. Even when people are notified of risks they are obviously hoping that it won't happen to them and don't focus too much on it. Every day when we hop into a car, we don't often reflect on the risk because we stop thinking that a serious accident might one day happen and so there is shock when it does occur, even though technically we always knew there was a risk. So perhaps counselling for clients when things don't work out as expected would be a good idea as well?[/QUOTE]<br /><br />I believe everyone needs to be notified of all the risks. It's their [B]right[/B] to be informed! I understand it's not fair a minority end up with a bad CI(or any surgery) outcome. I wish everyone would be a CI(or any surgery) success, but the [B]reality[/B] unfortunately does not reflect this.<br /><br />[QUOTE]I'm sorry to hear about your husband. I think that having vertigo as bad as this is probably worse then being deaf. There are lots of things that are worse then deafness which people don't seem to take into account when they recomend CI's. To me it's rather like playing Russian Roulette and I'd rather not gamble with my health in this way.[/QUOTE]<br /><br />This is why I have learned to accept my deafness and make do with what I can still hear with HAs. Yes I know im getting stem cells and yes I know there's no guarantee my hearing will improve. I will accept this and keep enjoying what sounds I can hear with HAs. There's more to life than understanding a high % of speech without lipreading. There's nothing wrong with being deaf and CI isn't mandatory to a happy, successful life. If you feel the need for CI, go ahead, I wish you luck in a good outcome.<br /><br />[QUOTE]No one knows how hard of decision it was for me to make for my children to get implanted. Even to last minute, I wanted to pull my son away from the surgeons hands. <br />Having my children implanted was the best decision I have made. I know it is not the best decision for all parents but for us it was.[/QUOTE]<br /><br />Deciding on CI for yourself is a difficult decision. Deciding for your child is 10x more difficult. I am deciding on HAs if any of my future children are deaf. I strongly feel that HAs can do the job very well as it has for me. For those who would rather choose CI over HA, it's a very hard decision.<br /><br />[QUOTE]It is literally impossible to undergo CI surgery or consent to CI surgery for someone else without being informed of the risks involved. No surgeon would proceed without informed consent and no hosptial would allow it. If any of you serioiusly contend that you suffered a known CI complication of which you were not informed prior to surgery, you should contact an attorney right now and sue the hospital for performing the procedure without informed consent.<br /><br />I don't know how it is possible to undergo CI surgery without being aware that vertigo is a possible complication. I was informed of this at least five times, along with statistics on the frequency of the complication. Temporary vertigo is common. I experienced it. Permanent vertigo is rare. I decided to take the risk. I daresay that, if I were to claim my surgeon lacked informed consent to perform my CI surgery, I would quickly be provided with a copy of the written document I signed listing in excruciating detail every negative CI consequence anyone had ever heard of or imagined and acknowledging that I'd been so informed.[/QUOTE]<br /><br />We will be seeing a class action lawsuit where all those who weren't informed will be joining the lawsuit. This includes those who get good benefit from HAs and weren't informed that their speech score is way above FDA requirements. I see about 25% of people who would be scoring well on speech with properly fitted and programmed HAs still get CI. Some of them end up hearing worse with CI.<br /><br />On another note, any surgery or procedure I get, I will definately ask for consent forms and a copy for me to keep. I will [B]inform[/B] myself of all risks and blame no one for any complications because I know im [B]rolling the dice [/B] and sometimes it ends up "snake eyes" bad luck happens in the real world and it can happen to anyone, including me.<br /><br />[QUOTE]How important is it to you to be able to hear and to communicate orally with those people, the vast majority of people, who don't sign, don't understand deafness and have little or no experience with deafness? If it is not important to you, then there is no reason at all for you to run the risks of CI surgery. You will always have a place in the deaf community. Personally, as a late-deafened adult deep into a career that absolutely requires me to communicate orally, with a family depending on me to earn a living and support them, for me the CI decision was a no-brainer. I would, without hesitation, make the same decision for a child in my care who is too young to make the decision. If I were the deaf parent of a deaf child, I might very well make a different decision.[/QUOTE]<br /><br />There are many people who get CI out of being pressured or buying into the hype but realise they don't actually need CI. I am able to communicate orally with others, with or without HAs. I would still like to hear better, but if this doesn't work out, ill accept this. I can't speak for you except to say that you should write a list of pros, cons and reasons why you want/need CI and decide carefully. Good luck!<br /><br />[QUOTE]As I remember recalling someone created a thread about a child who had a cochlear implant and was paralysis from the cause of repeating surgeries, some cochlear implanter's on this board of alldeaf and some hearing parents did not believe her story. I'm disappointing because it seems like some does not want to hear the negatives this is exactly one reason why I created this thread. There is no ONE side positive outcome for all those who received or planning on getting a cochlear implant. It's very important to look at both sides of the pro and cons of cochlear implants the positives and negatives aspects.[/QUOTE]<br /><br />Im in agreement and am seeing people on my own thread not believe anything negetive I post about CI. This just shows their extreme bias and them being unable to make an informed decision.<br /><br />[QUOTE]because some negatives aspects are not being reported or share, it's more like they just want to show the good in cochlear implants not the bad.[/QUOTE]<br /><br />This is exactly the feeling I am getting. Some of you used to be against CI and saw only the negatives, now you are very pro CI and see only the positives. I see both sides of the fence!<br /><br />-------------------------------------------------<br /><br />Feel free to discuss/comment them here and ask questions. Keep an open mind and see both sides to CI like I do. Note: If you want to discuss stem cells, please post your comments <a href="http://deafdude1.blogspot.com/2009/11/deafdudes-q-and-post-also-funny-false.html">here</a>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com26tag:blogger.com,1999:blog-7613875314868339925.post-26909178871527957562009-11-11T09:23:00.015-05:002009-11-27T01:26:58.806-05:00Deafdude's Q and A post. Also funny, false, negetive stem cell quotes!<span style="font-weight:bold;">Here's a bunch of funny, false, negetive stem cell quotes! My comments appear in bold as a correction to those quotes!</span><br /><br />Thank you for finally posting valid and reliable information. As your article points out, while promising results are being seen, much of the process in still in theory only, and there are many, many questions to be answered and problems to be solved before stem cell therapy will be available as a routine medical procedure. We are talking years. The easiest questions are the ones that have been answered. The ones that remain are the ones that are difficult, and will require much more research, including that of a longitudinal nature. <span style="font-weight:bold;">Stem cells works today!</span><br /><br />I am also a Type one diabetic saw this article onnline today about this stem cell discover so I e-mailed my doctor(this was his responce).<br />Nothing yet. This is at least 10-15 years from practical use. <span style="font-weight:bold;">stem cells can treat diabetes today!</span><br /><br />At least 15-20 years, folks. <span style="font-weight:bold;">Stem cells are being done today!</span><br /><br />Experts talk about the possibility to develop tumors if they won't find the right way to instruct the stem cells to stop their grow once the tissue has been repaired. <span style="font-weight:bold;">using your own adult stem cells is risk free!</span><br /><br />One factor keeps getting missed. What caused the hearing loss in the first place. Certain forms of SNHL like autoimmune & genetic may be a bit of a problem. Also most of us adults do not have cord blood stored anywhere. <span style="font-weight:bold;">Chloe's SNHL is autoimmune and she was treated!</span><br /><br />Provided it becomes available during your lifetime. Quite possible to die waiting. <span style="font-weight:bold;">I can get stem cells for my deafness today!</span><br /><br />Sorry, I can't agree to that position just yet. If you had said "may" instead of "will", then I'd be more inclined to agree with that position. It would be great if it does, but until we understand more and have more clinical trial results and write ups on stem cell restoring hearing, we can't say that with absolute certainty. Until then, it's hype since it's counting the eggs before they hatch. However, I do understand your viewpoints on how stem cells may be better. I would like to wish success to the stem cell research. <span style="font-weight:bold;">Chloe's results are proof stem cells are way better than CI!(CI=still deaf) Chloe can hear without HAs!</span><br /><br />As for costs and risk, this is pure speculation. You do not have any idea of the costs, no standard therapy does exist, nothing to base this on. The risks are not evaluated yet. In principle they are VERY RELEVANT. Scioentific papers talk about tumors. TUMORS vs facial paralysis/device malfunction. What's worse?<br />Remember we are still discussing in theory. Stem cells are not here yet, besides the claims of somebody. <span style="font-weight:bold;">Stem cells cost about $30k vs. $100k for bilateral CI. The risks are nearly zero for your own adult stem cells.</span><br /><br />Will, will, will, will, will.....<br />You HOPE. You have ZERO proof, and really high expectations. Why would you jump into something that is in no way proven safe or effective? And that is assuming that it ever does actually happen! <span style="font-weight:bold;">2 months later, Chloe's results are proof!</span><br /><br />I will say one thing about high expectations. Regardless of whether stem cells or other forms of technology become available (and I really hope they do), some of us are really wishing for this, and high expectations come as a result. I may not be sure that any of this is realistic, but I have said how much I would love to be hearing, so I can understand other's high hopes as well. <span style="font-weight:bold;">Stem cells are available and work today!</span><br /><br />Hopes and expectation are quite understandable. All of us hope stem cells or any other thing could come right now and finally give a cure without risks and side-effects.<br />Unfortunately life is much much more complicated than dreams. Stem cells will come, they will be a step forward, but they will carry their own limitations, associated risks, failure rate, etc. They will follow some progress in the years and hopefully they will be the promised land of hearing restoring. Hopefully.<br />The question still remain unanswered is "when?". <span style="font-weight:bold;">Stem cells are a reality today! Chloe hears without HAs!</span><br /><br />Really?!?!?<br />Are you sure of that?!? <span style="font-weight:bold;">Yes and I am correct.</span><br /><br />You know....... you're saying that "stem cells" are the result of the improvement.......but for all you know the improvement may have been due to things like a well cleaned out ear canal, or whatever. <span style="font-weight:bold;"> You honestly think removing ear wax can help a SNHL? That's only for conductive losses.</span><br /><br />As far as we know, all these news could be absolutely and simply false.<br />No peer reviewed publication, no proof of result. <span style="font-weight:bold;">There has been proof in animal (pre)clinical trials for years and proof in human clinical trials overseas for months!</span><br /><br />"One guy", "probably", "possible"...<br />Do you have ANY, any, any facts at all? <span style="font-weight:bold;">Stem cells has been a reality for a while!</span><br /><br />The results real or made up do not prove stem cells are ready for prime time. There needs to be data for speech discrimination and also other research centers would have to show they can get similar results and the results would have to be peer reviewed and published in journals. <span style="font-weight:bold;">Chloe can hear sounds, music and understand speech unaided!</span><br /><br />Stem Cells are not yet proven to be better than an implant. Yes, the results show an improvement but there will need to be much more data to prove stem cells are better than a CI. The upshot of the debate is that if someone with a severe to profound hearing loss desires to hear better now, and they qualify, an implant is a viable choice right NOW. If someone is in the prime of their working years and hearing loss is making it hard for them to function at work, getting a CI makes more sense than waiting years for stem cells. This would allow the person to stay with a job rather than having to quit because of hearing loss. Will children benifit from stem cells if they don't get the stem cells when they are young? Waiting might deprive children of speech and sounds. An implant can help them NOW! Stem Cells are an exciting possibility but it is important to be realistic. If someone wants to wait for stem cells that is their business. <span style="font-weight:bold;">Chloe was a CI candidate but got stem cells and hears at 90% of normal(50% of normal in her bad ear) and doesn't need HAs!</span><br /><br />She said that the young implanted CI kids are now doing BETTER than kids with moderate losses and hearing aids. She says that they never have to do catch up, because they don't fall behind. <span style="font-weight:bold;">Although not about stem cells, this quote is false. <a href="http://deafdude1.blogspot.com/2009/10/cochlear-implants-give-performance.html">CI=HAs with 80db HL</a></span><br /><br />Exactly!!!! I gotta say.....I think that hair cell regeneneration is going to be benificial for people who fit a specific canidacy profile.....meaning late deafened people....It may benifit some people who were dhh as kids (eg postlingal or kids who lost their hearing around one or two) <span style="font-weight:bold;">Funny because CI works great for most prelingual people! I expect much better with stem cells!</span><br /><br />Key words: "have the potential." You seem to consistently read this as "can right now." <span style="font-weight:bold;">I can get stem cells right now to treat my deafness.</span><br /><br />Au revoir! Have fun with rehabs and therapies! (And quite possibly trips to the mental ward if you can't handle the sensory inputs from the new stereocilia.) <span style="font-weight:bold;">Being able to hear with HAs, CI or stem cells does not cause insanity!</span><br /><br />I don't believe the stem cell would cure for deafness. It will not work for profound deaf. <span style="font-weight:bold;">You are wrong!</span><br /><br />Don't get too excited, or you'll end up in that big black abyss called depression because you've finally realized that stem cells for hearing is just not going to happen for a long time, and you don't want CIs ever. <span style="font-weight:bold;">Ironically, this culturally Deaf person is very pro CI and has a CI herself, yet she's against stem cells for deafness. Stem cells is "happening" now!</span><br /><br />Yep, there's stem cell hype as The Next Best Thing Since Sliced Bread(TM). Realistically, it's a ways off. It'll get here when it gets here. And when it gets here, then we'll really understand where it'll be of value. Til then, enjoy life. <span style="font-weight:bold;">Stem cells is the end all and it's here!</span><br /><br />No offense to those of you who are all about the stem cell idea and even hopeful of being a candidate for this.... but seriously, why get your hopes up NOW when it may not even happen for who knows how long? <span style="font-weight:bold;">So many stem cell naysayers! I knew it would happen soon!</span><br /><br /><br /><span style="font-weight:bold;">Questions that I am answering:</span><br /><br />1. Q: Ok. Why is it ok for a cure for blindness but not for deafness? Sounds very elitist and selfish to me.<br />A: Agreed! Everyone has the right to choose to see and hear. Why would I want a more difficult life if technology is there to correct our disabilities?<br /><br />2. Q: So what's the difference between the CI company hype and the stem cell company hype? What makes stem cell hype more "legit" then CI hype?<br />A: Because stem cells will give the best hearing, way better than CI for less cost and risk.<br /><br />3. Q: Sure after that, HAs and CIs will soon become a niche. the quastion is "when?".<br />A: This is why I am going to wait 3-5 years more. Stem cells is based on science, not magic! CIs will be old news almost overnight. HAs will continue to be widely used because those with mild losses won't be candidates for stem cells and most with moderate losses already hear great with HAs and aren't going to spend the money for 10db improvement. It's those with severe-profound losses like me who could improve down to a moderate loss.(note that this answer to him is already outdated!)<br /><br />4. Q: Why is 20 db with 10% comprhension better than 30 db with greater than 80%???<br />A: Something would be very wrong if you heard at 20db and understood almost no speech. I heard way more than 10% speech and I never had 20db hearing in the speech frequencies. If I had enough residual hearing to get to 20db with HAs, id be looking at around 80% speech and being able to hear more sounds. This is why im getting stem cells!<br /><br />5. Q: Anyway, anyone who want to have stem cells to cure deafness can dream on and will not happen for a very long time or will never have stem cells. Just get use to being deaf for the rest of your life. There is nothing wrong with being deaf. Okay?<br />A: That is your choice to stay deaf and I respect this. Please respect our choice to be hearing. There is nothing wrong with being hearing!<br /><br />6. Q: It might be okay for late deafend but not for the deaf who was born that way. Why can we just have our body the way we have always been natural as we are born this way? If the late deafend want to hear again and take the risk to have stem cells, then that is their decision. <br />A: Please let every deaf/Deaf person decide for themselves if they want stem cells to improve their hearing. I am using my own adult stem cells to improve my hearing 100% naturally because they are from my own body and will be a part of me!<br /><br />7. Q: Nobody is saying that anything is wrong with being deaf. However, some of us have a desire to change things for ourselves. Each of us are entitled to feel the way we do. Same as for all the people who get CI's - they wanted to improve things for themselves and I'm glad for them. Why should we have to "just get used to being deaf for the rest of your life" if we choose not to?<br />A: Exactly!<br /><br />8. Q: when you get stem cells, there is no way to reverse it right? There is no way to turn them off at will. With new implantees, if things get overwhelming, they can turn them off then try again-- or ask to have them removed. They take them off at night as well. With stem cells, you can't do that. It's on 24/7, and no chance to escape from overwhelming new environmental sounds; at least with CIs, you can escape from them.<br />A: Stem cells can be reversable with ototoxins that destroy your hearing, but why anyone would want to do that is beyond me. If you are happy being deaf, don't get stem cells in the first place! On another note, you can choose how much improvement you want with stem cells as dosage can be adjusted to correspond with 10, 20, 30, db improvements. You can always get additional stem cell treatments for additional improvement in hearing. Someone with 100db HL could ask to be improved to 70db HL(which is better than CI already) and will be able to remove HAs for silence. <br /><br />9. Q: Why are so many people against stem cells for deafness?<br />A: This is a question I sometimes ask myself. I have noticed that almost everyone who is against this are involved in Deaf culture. Those culturally Deaf would get stem cells for blindness, however!<br /><br />10. Q: Will stem cells become accepted in due time like CI is today?<br />A: Quite likley. We have seen how CI slowly gained acceptance.<br /><br />11. Q: How do you know that these new hair cells will function as "normal" hearing cells do? What if they are as damaged or broken as the ones you were born with? What if they work for awhile and then die off? We don`t know what will happen, because there has been no testing and no follow up.<br />A: The new hair cells actually aren't as good as "normal" but they are certainly better than no hair cells. I am missing all my OHC and some of my IHC in the lows and nearly all my IHC in the mids and highs. The pioneers are going ahead today with stem cells. We will have plenty of follow up news on their progress of stem cells. Update: Chloe's stem cell results proves this. She hears at 90% of normal and doesn't need HAs. Stem cells might not stop a progressive hearing loss if it's based on defective genes, for that youll need a genetic cure. Stem cells however does improve your hearing and can be a great stopgap while waiting for a genetic cure. I am still getting stem cells even if my deafness is linked to defective genes. I will still hear better and my hearing loss is stable.<br /><br />12. Q: Plus, Deafdude, why do you think your brain will be able to handle this, new, sudden hearing? You have been profoundly deaf since birth, your brain has never heard these things. I think that would make you a very bad candidate!<br />A: I find it ironic you think ill do better with CI, yet you think stem cells won't work for me. CI has worked for many who were born deaf, stem cells won't be any different as far as the brain getting used to the new sounds. Besides I heard most sounds and some speech as I was fitted at 4 months old with the best analog HAs with the gains maxed out. I still had some high frequency hearing as well. I have prior auditory memory of most sounds and some speech. I give it a few months before I adjust to the new sounds.<br /><br />13. Q: Then why he always obsessed with Stem Cell???? Nobody are interest to get stem cell to cure for deafness.<br />A: There is nothing wrong with wanting to hear better! You got a CI yourself(you also used to be against CI!) so I find it ironic you can't accept other's choices to hear better! You weren't happy with your own deafness and looked to a fix with CI! I am not happy with my deafness so I am getting a stem cell fix!<br /><br />14. Q: The same question can be asked...why are some people obessed with CIs? Some people are just interested in Stem Cells, some are interested in CIs and some arent interested in hearing at all.<br />A: Agreed! Life is all about choices!<br /><br />15. Q: What do your family and friends think of your stem cell choice?<br />A: My family and friends(all hearing) fully support stem cells for me and if they lost their hearing, they would get stem cells themselves asap to give at least some of the hearing back that they lost. Right now, most culturally Deaf are against stem cells. Itll take time for them to accept stem cells just like it did for CI. Many of the Deaf who were against CI are no longer against CI or they are even pro CI. Some of them have gotten CI themselves.<br /><br />16. Q: How about stem cell to cure for deafness to make against deaf culture?? That is same as deaf culture's against CI. I rather be deaf with CI period!<br />A: Funny, because you were against CI but now you have CI! Once stem cells becomes accepted, some culturally Deaf will be getting stem cells just as they were getting CI after CI started becomming accepted.<br /><br />17. Q: DD, Why is it better to have a 100db loss in the highs (which you claim is possible) than to be able to hear at 30db across all frequencies? I don't see how that is an improvement...<br />A: I used to have 100db loss on my 1998 audiogram and was hearing at 35db with HAs! Todays HAs with 70db gain can aid a 100db HL down to 30db! I also have the option of transposition.<br /><br />18. Q: If having heard and then lost hearing and not hearing for 40 years before trying stem cell, will the brain be able to pick up where it left off?<br />A: Powerful HAs can keep the brain stimulated to sounds. It’s not the same as someone stone deaf who can’t hear a single sound with HAs. I hear plenty with HAs so I am not too worried about how ill do with stem cells. Most prelingually deaf who got *some* benefit with HAs do well with CI. Itll be even better with stem cells!<br /><br />19. Q: Will I have to trade my Deaf friends for a new set of hearing friends?<br />A: The Deaf friends who accept your choice for stem cells(or CI) will continue to be your friends. Those who can't accept the fact you hear better will move on, it's their loss not yours!<br /><br />20. Q: Some here seem to think, normal hearing could come as a mishmash of unintelligible noises just as with hearing aids cranked up to full volume. It sounds that way to Deaf people with a limited range of frequencies available to them. Will it still sound that way without amplification and with a full range of frequencies?<br />A: If you never heard a sound in your life, not even with HAs then this is possible that you won't do well. If you got some benefit from HAs at one point in your life, you will do quite well. I was severe-profound deaf and had HAs cranked to the max. I did not get normal hearing thru HAs but I heard lots of environmental sounds and a limited amount of speech. When I got new HAs, my brain was able to adjust and I heard all kinds of new sounds and my speech understanding improved. It's the same for those getting new HAs, CI or stem cells.<br /><br />21. Q: I am deaf and would like improved hearing but not 24/7 hearing. I need my sleep! What are my options?<br />A: You can opt for a partial correction by getting a lower dose of stem cells. The other option is earplugs. Your brain will soon get used to hearing 24/7 and you won't be so bothered by every little sound.<br /><br />22. Q: Why wait for stem cells to hear when you can hear quicker with CI? <br />A: Because stem cells is available today. By the time you wait to be approved for CI, several months will have passed. I am getting stem cells in several months!<br /><br />23. Q: How can you possibly know what the cost is going to be for something that is still in development?<br />A: Because ive seen price quotes and also asked around. The estimate is $30,000.<br /><br />24. Q: I can understand that you would rather hear without having a device on your head. Good luck with the stem cells, what other reasons do you have?<br />A: Ive mentioned my reasons for choosing stem cells over CI numerous times in my blog. Thanks for respecting my choice!<br /><br />25. Q: What about those who might have ossification with their inner ears? how would stem cells help?<br />A: Might have to wait till technology can regrow a healthy cochlea from stem cells. I did read they are working on auditory nerve implants as a stop-gap measure.<br /><br />26. Q: How would adjusting to stem cells differ from CI?<br />A: Stem cells very likley will give better quality of hearing so there's less interpretation/filling-in-blanks for the brain to do. The signal will be new indeed but better with stem cells. The sound would also be more natural. Adjustment may be rapid, especially for late deafened.<br /><br />27. Q: Why would you NOT want a CI? If you want to hear and understand spoken language, why would you wait and hope when clearly there is a tool that works RIGHT NOW!<br />A: I get asked this alot. It should be clear by now that stem cells are better, cheaper, safer and available now! I even have a thread of the advantages of stem cells over CI. I see no reason to get a CI at this point. I didn't know much about CI till 2008 and by then, there was news about hair cell regeneration. The articles and "experts" said it would take 30+ years for "deaf cure" to be available, but I knew this was wrong! Those who weren't against stem cells were saying the wait would be only 5 years, those who were against stem cells said the wait would be 50 years! I knew who to believe at this point!<br /><br />28. Q: How long are you going to wait for stem cells or some other method to treat/cure your deafness?<br />A: I discussed this with my dad and agreed I need to wait several more months for more pioneers to get stem cells and for us to learn about their results. <br /><br />29. Q: How much can stem cells improve my hearing?<br />A: This is something even I don't know in full yet. I only have one audiogram of anyone who got stem cells. From emails to stem cell labs, some said the improvement was quite small/insignificent, others said it was in the 20-30db range and still other labs said the improvement was huge and some of the patients were able to hear a good deal without HAs! Chloe is one such example! Animal studies showed similar results. So the conclusion is to have realistic expectations of a 20 or 30db improvement if you have a severe-profound HL and a smaller improvement if your HL is only moderate.<br /><br />30. Q: Can I get stem cells again for additional improvements?<br />A: Of course. Very little is known about how much additional improvements you could achieve. It might make sense to wait a couple years for technology to advance before getting stem cells a second time for a better chance of a bigger improvement.<br /><br />31. Q: I already have a CI, what are my options?<br />A: You could benefit from stem cells in your virgin ear. The CI ear may have to wait decades and may require growing a new, healthy cochlea using your own adult stem cells. The damaged cochlea will be removed and the healthy cochlea transplanted and stem cells used to connect the nerves to the cochlea and to grow hair cells. I know many people who lost interest in CI and are saving both of their ears for stem cells.<br /><br />32. Q: I can't afford stem cells, but insurance will pay for my CI, what should I do?<br />A: The first CI may be "free" but insurance rarely pays for a 2nd CI so itll cost you $50,000+ if you want to hear with two ears. Stem cells can treat both ears for half the cost of one CI. I have been saving my cash for stem cells. There's many ways to save money and stay out of debt.<br /><br />33. Q: Why are you so against CI?<br />A: I get that question alot. I am not against CI, but know at this point CI does not make sense. Those who are against stem cells will choose CI and don't care about ever getting stem cells. CI has been great for most people, now it's stem cell's turn to be great for the rest of us. Hearing parents will be choosing stem cells for their deaf babies, late deafened adults will choose stem cells. Most people will be choosing stem cells in fact for all it's advantages over CI. The CI debate will end.<br /><br />34. Q: Hypothetically, if someone like me with a fluctuating and progressive hearing loss got stem cells (and they work optimally) would their hearing not just continue to get worse after receiving stem cells?<br />A: If your HL is genetic, stem cells won't change anything except improve your hearing. If you get a 30db improvement with stem cells and you lose 10db per year, after 3 years youll be back to baseline. Stem cells would be a stop-gap measure till you get a genetic cure in the next several years. I would still get stem cells for myself if my loss was progressive. Id be able to get stem cells many times then get a genetic cure for the same cost of bilateral CI.<br /><br />35. Q: Would these not also die off as you get older? Are the stem cell treatment continuous, or a one-time deal?<br />A: Stem cells can be repeated as many times as you want as long as you can afford the cost each time.<br /><br />36. Q: Has Chloe's hearing still remained the same since she had stem cells? Do you think she'd need some more?<br />A: If her hearing loss was stable before stem cells, it will be stable after stem cells. My HL is stable so I expect it to be stable and last a long time.<br /><br />37. Q: Do you think Deaf people and children will be forced to have stem cells or do you also think CI's and HA's will still be available for those who are not interested in stem cells?<br />A: CIs will be history or a tiny niche market. Insurance will stop paying for CI once stem cells becomes widespread. HAs will still be around for those with mild to severe hearing losses who can't afford stem cells. Those who are profoundly deaf have the choice of a partial or full correction with stem cells or simply live without sounds.<br /><br />38. Q: Regarding mild HL and stem cells, do you mean for insurance purposes, or in general?<br />A: Insurance probably won't pay for stem cells except those with severe-profound losses and not till 10-15 years from now when FDA approves stem cells. I am not waiting this long and no guarantee insurance will even pay at all. No reputable stem cell center will attempt to treat a mild hearing loss or someone who can still hear well without HAs. Stem cells aren't likley to give more than a few db, if any of improvement.<br /><br />39. Q: If some legends of music with mild to moderate loss (Phil Collins, Sting, Pete Townshend, etc.) began to benefit from stem cell treatments, it could help advance public interest and thus generate more research and investment in the refinement of them. What do you think?<br />A: Stem cells should benefit a moderate loss(40-70db) and take that loss down to 30db, 25db, maybe even 20db after several rounds of treatment. This won't be cheap! Far, far, far cheaper to buy HAs online and get down to way better than 20db aided. This is why I don't see HAs going away for 30-50 years till stem cells or some other technology becomes so refined and cheap.<br /><br />40. Q: Why are there no reports of human clinical trials in any major University or research lab? <br />A: Because stem cells aren't allowed/available for several years in America.<br /><br />41. Q: If stem cells really restored hearing in someone like Chloe, wouldn't this be front page news in a major paper?<br />A: It is front page news on the internet which reaches a much larger audience and saves on paper.<br /><br />42. Q: Will they cause other things to "reset" as well? For example, I have had my wisdom teeth removed. Will I start growing new wisdom teeth to replace the "lost" ones when I'm treated with my own stem cells.<br />A: Stem cells currently can't regrow anything, just repair existing damaged cells. For this reason, you need a healthy cochlea(sorry CI wearers) and auditory nerve and no inner ear infections to benefit from stem cells.<br /><br />43. Q: But everyone keeps saying that a practical stem cell cure has not be proven, and isn't just around the corner. Are they just covering their rear ends?<br />A: If they are against stem cells, you have your answer right there.<br /><br />44. Q: How do I know which companies involved are fraudulent?<br />A: Do your research, read other blogs of people getting stem cells, ask around.<br /><br />45. Q: Thirty to seventy grand is a lot of dough, DeafDude. How can people afford it?<br />A: I can tell you now that $70,000 for hearing loss is a ripoff. Chloe got treated for $30,000 plus travel costs.<br /><br />46. Q: What will you do if stem cells doesn't work for you?<br />A: Unlike CI, I only lose the money but retain my residual hearing. Ill be able to keep wearing HAs. Itll be a bummer if I don't get an improvement but oh well, there's no guarantees in life.<br /><br />47. Q: What is the fate of CI and the companies that make them now that stem cells are available?<br />A: CI will fade into obsolence(it already has begun) and won't be around once America FDA approves stem cells. Today, many people are deciding(saving their ears) not to get CI after all(CI=can't get stem cells for 20+ years) and are waiting for the stem cell pioneers to go then they are going ahead next. There will be a class action lawsuit for those with bad CI results and those who were getting benefit from HAs but were forced/tricked into CI. The insurance companies are going to want their money back, they will sue as well! The CI companies will go bust within a decade. CI has served it's purpose in the past but time moves on.<br /><br />48. Q: I heard about the totally implantable CI, isn't that like a cure?<br />A: CI is never a cure, just a tool to give you access to sounds similar to a HA. Besides the totally implantable CI gives poor speech comphrension and faint, muffled sounds because the speech processor is blocked by layers of tissue. Itll be at least 5 years, if ever before the totally implantable CI becomes available and only a tiny fraction will be interested and that's only those who are against stem cells and can find insurance still willing to pay for CI at this point in time.<br /><br />49. Q: I got a CI a couple years ago, are you saying there won't be any more support?<br />A: There will be support for mapping and repairs of the external speech processor for at least another decade because so many have CI right now. If your internal CI stops working years from now, you are gonna have to wait till technology is capable of regrowing you a new cochlea. If you have saved your other ear, youll be able to benefit from stem cells in the virgin ear.<br /><br />50. Q: How come you didn't take opportunity to learn ASL to be fluent in it?<br />A: I was given that choice(but was never forced) to learn ASL. I chose to read lips and practice speaking clearly and be 100% oral. None of my hearing friends/family signs and I have never been involved in Deaf culture. I am getting stem cells to better fit in the hearing world.<br /><br />update(Nov 22) <a href="http://www.hearingloss.org/Community/docs/11-19-09_Doug_Cotanche.pdf">HLAA stem cells with Dr. Cotanche</a><br /><br />I can tell you right now that stem cells is available today in many countries. He is predicting a 20+ year timeframe, I doubt even America will fall this far behind because there's billions to be made. I give it 3 years before we see human clinical trials in America and 7 years before stem cell clinics in America start treating hearing loss/deafness. There will have been many thousands(including me and my friends) who will travel to other countries to get stem cells by then. Technology is so much more advanced elsewhere and costs are much lower as well.<br /><br />If you ask the doctors in America about stem cells, they will either deny it or give a 20+ year timeframe. This goes for blindness, cancer, diabetes, MS, injuries, etc besides deafness. They and their western medicine can't help you. Thousands have already traveled to treat their conditions other than deafness. There's numerous blogs and testimonals to the success of stem cells for their conditions. I can tell you right now that if anyone in my family developed a condition or illness, we will travel and get treated with stem cells. Itll be several more years before stem cells becomes available in America to treat people.<br /><br />Furthermore, I have been in contact with stem cell labs, including the one that treated Chloe. She got 600 million stem cells at a cost of $30k plus $7500 to remove her fat cells from abdomen plus travel costs to get the stem cells. However this is less than half the cost of bilateral CIs so stem cells for this reason, among many other reasons are a great deal! I also learned from that stem cell lab that autononomus(using your own adult SC) in a large dose is what produces real results for deafness and all other conditions. The smaller improvements attained from umbilical cord blood stem cells was due to different type of stem cells as well as lower dosages. I also learned that stem cells are 100% successful, just that the amount of improvement is different for each person. You can always return for repeat stem cell treatments!<br /><br />As long as you have a healthy cochlea and auditory nerve, stem cells will replace the missing hair cells and auditory neurons and improve your hearing. If stem cells won't work for you, a CI won't work for you either, anyway. Stem cells will eventually(20+ years) be able to regrow a badly damaged cochlea(for those who have CI, ossification or disease) as well as regrow a badly damaged or missing auditory nerve. There is no reason stem cells won't work for me, however I have realistic expectations and don't expect to be fully hearing after stem cells.<br /><br />Thanks for reading. Feel free to leave a comment or ask a question and ill put it up with an answer. You may also agree or disagree with any of my above answers and quotes.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com67tag:blogger.com,1999:blog-7613875314868339925.post-77756358962469863822009-11-07T16:15:00.005-05:002009-11-07T17:25:35.335-05:00Chloe gets stem cells and doesn't need HAs anymore!<a href=http://www.earthtimes.org/articles/show/rnl-bio-rescues-a-college-student-from-autoimmune-hearing-loss,1027683.shtml>Origional source</a><br /><br />Read her stem cell story here! This is concentrate proof! That news has been posted on many other blogs and forums! Stem cells to improve hearing is a reality now! The anecedotes I posted before were true after all! I am so happy for her that she got such a wonderful result!<br /><br />The price quoted is $5000 minimum which isn't bad at all. Me and my parents are betting the total will be anywhere from $15,000 to $30,000 when all is said and done. This is still way cheaper than CI! Even if insurance pays for CI, I can't afford $50,000 for a 2nd CI. Im not interested in CI anyway as im getting stem cells. I posted about the advantages of stem cells vs. CI earlier. One of my unilateral(one ear) late deafened friend says we could get our chance to fly overseas as soon as summer of 2010 to get stem cells! It's likley enough pioneers(50-100) will have gone ahead by then and we can see their results and know what to expect. I will post more with any further news I get.<br /><br /><a href="http://kokonutpundits.blogspot.com/2009/11/video-interview-caption-with-first.html">link to my friend's blog with youtube video</a><br /><br />I showed the youtube video to my dad(the video above now has CC)<br />My dad after reading this blog and the news says if my hearing improves to what I showed in the audiogram below, that would be "beautiful" to hear at 0db! He saw the CI at 30db across and is excited for me to get stem cells. We discussed if stem cells don't work, I keep my residual hearing but if CI doesn't work(or even if it does), pfffffff your residual hearing is gone! You won't be able to go back to HAs nor get stem cells. Dad agrees that CI is truly a last resort. CI does not interest me, if it interests you that's your choice.<br /><br />If stem cells didn't work for me, ill keep wearing HAs while awaiting a gene cure or some other procedure that is likley to improve or even restore my hearing. Good chance stem cells will work, the question is how much improvement I can hope to achieve. I think a 20db improvement is realistic at minimum but I may achieve 30, 40 or even more! I have realistic expectations in how much I can hope to improve.<br /><br />Chloe, a student in California lost her hearing 3 years ago due to a cold. She got another cold and lost more hearing in the other ear. Her hearing loss became progressive. Her parents are doctors. They both work in a hospital and none of the doctors could restore her hearing initally. They believed the hearing loss is autoimmune related. She was fitted with the best HAs bilaterally(both ears) to amplify her residual hearing. Later on(3 years after she lost her hearing), the doctors discussed stem cells with Chloe's parents. It was assured that using her own stem cells was 100% safe even though it was experimental. She was a success case and no longer wears HAs. One ear is at 50% of normal and the other ear is at 90% of normal. Music sounds great, especially in her better ear. She is so happy to be able to hear again!<br /><br />My comments: I can't find anything about converting % HL to db HL. I did find that the cutoff for normal hearing is 25db HL. So it's likley her good ear is hearing at 25-35db PTA and her bad ear is probably at 50-60db HL or a moderate HL. She could benefit from a HA in the bad ear, but chooses not to wear HAs. Her good ear is good enough that she hears plenty without needing HA. Someone will need to email that clinic or her parents and find out her before and after audiogram or at least what db was her loss before and after? Regardless, such a drastic improvement that hearing is functional without HAs gets me and my dad very excited! I look forward to the day of hearing better. I have realistic expectations as ive mentioned many times.<br /><br />Her case serves as evidence that stem cells has the ability to regenerate hair cells NOW and give near normal unaided hearing! Not everyone will achieve an improvement as drastic as she and improvement may not be the same for both ears. It's possible if she got a 2nd round of stem cells, she could achieve additional improvements in her worse ear. Ive been reading stem cell studies on animals and while none get down to 0db perfect hearing, the improvements are huge and on the order of 30, 40, 50db! The animal studies show that the more residual hearing that is saved, the better your hearing will be. Those with plenty of residual hearing are getting down to near normal hearing which is on the order of 20-35db loss compared to their hearing before it was destroyed with sounds or ototoxins. I could get down to near normal hearing at 250Hz and below and in the mid and high frequencies, my hearing could be anywhere from 50db HL to 100db HL because I have virtually no residual hearing at 1000Hz and above. I plan to use transposition if I don't have enough high frequency hearing.<br /><br />My chances of being able to get stem cells in the very near future are high. I am just waiting for more pioneers to have gone ahead and report their results. I want an idea of how much improvement to expect and also stem cell technology is moving fast, it surely will be better tomorrow than it's today. The evidence of stem cell's success is rapidly growing and I look forward to seeing more results by the other pioneers who are going ahead. I may decide to go ahead sometime in 2012, but could be much sooner depending how many pioneers are going to be getting stem cells in 2010(next year) and how great their results are.<br /><br />My family and friends(all hearing) fully support stem cells for me and if they lost their hearing, they would get stem cells themselves asap to give at least some of the hearing back that they lost. Right now, most culturally Deaf are against stem cells. Itll take time for them to accept stem cells just like it did for CI. Many of the Deaf who were against CI are no longer against CI or they are even pro CI. Some of them have gotten CI themselves.<br /><br />It's true that it's unusual for a prelingually deaf to be interested in stem cells. But then, most prelingually deaf are involved in deaf culture, relay on sign language, don't consider sound/speech to be important and are proud to be Deaf. They don't need/want a fix, not even CI. I respect their choice and they should respect our choice.<br /><br />Stem cells will be very popular for deaf babies born to hearing parents, late deafened postlinguals and prelingual deaf who have never been involved in deaf culture, don't know any ASL and are 100% oral. We live in the hearing world and improving our hearing would make it easier for us to interact in the hearing world. Cochlear implants have been very popular for those group of people and I expect stem cells to follow.<br /><br />The next step is for me to research the extent of how much stem cells can improve hearing. At this point, it's known that stem cells works on humans, is available now and the regenerated hair cells function great! I also have realistic expectations and will be happy with as little as 20db improvement.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbrSUH_F4v4pDJdfyIog4lsH-GDo3y6fUfXXRqS4dg6SLU3vp_cGyPPer554xF8D4KP0C2ZHdmwqGvkCCjChAgm_a6zUBnJ8eVLS7isyV5pZbiLmduLXugM3KapXbMpBwCXrhaXgir-aQ/s1600-h/afterstemcells.JPG"><img style="cursor:pointer; cursor:hand;width: 365px; height: 383px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbrSUH_F4v4pDJdfyIog4lsH-GDo3y6fUfXXRqS4dg6SLU3vp_cGyPPer554xF8D4KP0C2ZHdmwqGvkCCjChAgm_a6zUBnJ8eVLS7isyV5pZbiLmduLXugM3KapXbMpBwCXrhaXgir-aQ/s400/afterstemcells.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5401477423663394178" /></a><br /><br />30-40db improvement would get me to 0db in the lows and normal hearing in most frequencies. Ill hear environmental sounds similar to a hearing person and hear speech much better than CI, but still a little below that of a hearing person. My aided audiogram after stem cells could be better than what my dad hears unaided. If stem cells gets me to only 100db in the highs, ill just enable transposition to get me to better than 30db across.<br /><br />I would be very surprised if stem cells gives me or most people enough hearing to not need HAs. Her results could be exceptional for all we know. We would need to see results from at least a dozen others to further determine the extent of the improvement. Ive researched the improvement in animal models and have come to the conclusion that the audiogram above reflects average improvement after stem cells. I would have a moderate to severe HL and be aided to normal dipping down to mild in the highest frequencies. This is a limitation of HA's gain.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com28tag:blogger.com,1999:blog-7613875314868339925.post-35544847174618186102009-10-21T02:00:00.008-04:002009-11-04T09:36:14.722-05:00Cochlear implants give performance similar to HAs with 80db HL<a href="http://archotol.ama-assn.org/cgi/content/full/130/5/563">This study shows CI matches HA with 80db HL</a></p><p>Comprehensive study that demonstrates medium-gain HAs with only 40db gain was able to match the average CI result except in HINT+5 where HAs were significantly ahead!<br />The average HA was 78db PTA unaided, 38db aided. For CI it was 110db HL aided down to 36db.<br /><br /><strong>My comments: </strong>With a 110db HL, even high-gain HAs with 70db gain would aid you down to only 40db. Speech scores with such a profound loss would be far below the scores of CI and those with severe losses because there's extensive cochlear dead regions associated with a 110db loss. Also the surviving hair cells would be of very low quality and contribute little to acoustic information.<br /><br /></p><p><a href="http://www.journals.elsevierhealth.com/periodicals/pedot/article/PIIS0165587603001873/abstract">CI matches HA with 90db HL</a></p><p>Ive been doing my research on comparing CI vs. HA and I found this! I will keep looking for more articles that compare the two. But from what ive researched, CI today usually gives better hearing than what HAs can give for a profound loss. But CI appears to match the performance of HAs for a severe loss.<br /><br />I also learned that those with severe losses generally score at least 70% speech on a difficult monosyllable test. I will do more research on speech scores for different degrees of hearing loss. But that article does show that those with profound losses generally scored below 50%. It's that group who with CI could hear comparable to those with severe losses and HAs. Speech would improve from perhaps 40% to perhaps 80% which is significent.<br /><br /></p><p><a href="http://www.mediotol.org/MJO4/Yucel.htm">HAs come out way ahead of CIs in most tests</a></p>Results: The aided pure-tone hearing thresholds of the hearing aid users were better at low frequencies. In contrast, the cochlear implant group’s thresholds were better at high frequencies. with a statistically significant difference at 250 and 6000 Hz.. The hearing aid users had similar scores to the normal hearing group in vowel identification and pattern perception. In addition, the hearing aid group performed better than did the cochlear implant group in vowel identification, pattern perception, and daily sentences tasks (P = .001, P = .02, P = .0001, respectively). No significant differences were found between the hearing aid and cochlear implant groups in multi-syllabic, phonetically balanced words, and consonant identification tasks. Although similar performances were obtained for three groups in music perception tasks, there was a positive and significant correlation was found between pattern perception and rhythmic perception ability of the cochlear implant group, whereas the hearing aid group, who had better performance in multisyllabic word discrimination, also performed better in tonal and rhythmic tasks.<br /><strong>My comments: </strong>Hearing aids are great, no need to say any more!<br /><br /><br /><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-XztxvsowAOUnZRK7JMO3JdPEENlAp94kWgPes0WsSePh0b7eANRQVJrjKCZnLpxb29xKpRV3BgFRYWA9tCHaNMhtYaAcz8VrwVn37BblPC20JMNWEKbqtiLP8pCdzocGp8UxzHAb6ZQ/s1600-h/CIperform2009-05_02-07.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 245px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-XztxvsowAOUnZRK7JMO3JdPEENlAp94kWgPes0WsSePh0b7eANRQVJrjKCZnLpxb29xKpRV3BgFRYWA9tCHaNMhtYaAcz8VrwVn37BblPC20JMNWEKbqtiLP8pCdzocGp8UxzHAb6ZQ/s400/CIperform2009-05_02-07.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5395011632856759282" /></a></p><p>FIGURE 3. Advances in technology and signal processing in cochlear implants have resulted in improved performance outcomes over time. Shown are group mean percent correct scores for CUNY and HINT sentences in quiet, and for CNC monosyllabic words. Source: Internal data from Cochlear Americas clinical trials.<br /><strong>My comments:</strong> CI performance improvement has peaked and leveled off since the early 2000s. Future technologies won't even be CI based as CI has physical limitations due to physics and principle.</p><p><a href="http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ProduktNr=224147&Ausgabe=226380&ArtikelNr=27893">Results of Pediatric Cochlear Implantation Compared with Results Obtained with Hearing Aids</a></p><p>Profoundly deaf children with 110db HL and 22% speech improved to 72% speech after CI and they hear with CI comparable to those with a severe hearing loss(70-85db) younger children did better with CI, the performance of children implanted between age 2 and 4 was equivalent to the mean performance of children with hearing loss of 70-85 dB wearing hearing aids.</p><p><br /><img src="http://www.imagechicken.com/uploads/1256018431065533300.jpg" /><br /></p><p>Image got cut off, to view in full, click <a href="http://www.imagechicken.com/uploads/1256018431065533300.jpg">here</a></p><p><strong>My comments:</strong> The HI group had only 55db PTA HL while the NH group had 5db PTA HL. Properly amplified, a moderate HL(60db max) which involves only the OHC and not IHC can give you near normal hearing except in the most challenging situations. Even with a channel simulator, the NH and HI did far better than CI. CIs do a great job in quiet but not so well in noise. It should be known that CIs aren't a cure and they won't give you anywhere near normal hearing, but they can be great for the profoundly deaf.</p><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioGo-_InDmcPrKsefbrrjGzv20CsoWkprjzvOygyPUbgcT_eCyApA_KO6fk7_S2d3JKZV5e25uZSQEjO4XqcUYOTopIYzJ1nBcwcQ_6EYj0TlZPVb3Y7B3keqj__RXedXhJdMI2iMiIhk/s1600-h/CIperformance2009.JPG"><img style="cursor:pointer; cursor:hand;width: 276px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioGo-_InDmcPrKsefbrrjGzv20CsoWkprjzvOygyPUbgcT_eCyApA_KO6fk7_S2d3JKZV5e25uZSQEjO4XqcUYOTopIYzJ1nBcwcQ_6EYj0TlZPVb3Y7B3keqj__RXedXhJdMI2iMiIhk/s400/CIperformance2009.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5400256692639591234" /></a><br /><p><br /><br />I found a recent CI study that shows the average performance for CI speech scores. Different studies show slightly different scores. The concensus is that CI can match HAs for someone with a severe hearing loss. CI is usually better than HAs for those who are profoundly deaf so it's no surprise many become CI candidates.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com21tag:blogger.com,1999:blog-7613875314868339925.post-65308742751119573342009-09-11T16:07:00.009-04:002009-09-11T18:36:37.739-04:00Four year old gets stem cells, improves 30db! Before, after audiograms provided!<p><span style="font-size:180%;">Four year old successfully treated with stem cells for deafness!</span></p><p><span style="font-size:100%;">This breaking news came from </span><span style="font-size:100%;">Phi4sius. He got the information directly from them.</span></p><p><span style="font-size:100%;">From Beike Biotech. I have been in touch with them since earlier this year. They responded earlier that they hadn't yet treated Sensorineural Hearing Loss. Obviously, things have changed on that front:<br /></span><br />We are also happy to tell you that we have successfully treated two patients with severe sensorineural hearing loss with stem cell. The last patient was discharged last week from our [name removed to protect privacy] treatment center. We arranged some hearing tests for this 4 years old patient before and after stem cell treatment. Also we carried out a treatment satisfaction survey with the parents after treatment. Patient witnessed great improvement after stem cell treatment and was satisfied with this treatment. <br /><br />Below we will give you a comparsion about the change of related hearing tests before and after stem cell treatment of this patient.<br /><br />ASSR<br /><br />Before<br /><br />Freq. - Right (dB) / Left (dB) <br />250 - 70 / 70<br />500 - 91 / na<br />1000 - 106 / na<br />2000 - na / na<br />4000 - na / 98<br /><br />After<br /><br />Freq. - Right (dB) / Left (dB)<br />250 - 60 / 40<br />500 - 84 / 84<br />1000 - 74 / 109<br />2000 - 92 / 107<br />4000 - 101 / 96<br /><br />ABR - No significant changes after treatment. <br /><br />The results can't get anymore scientific than that other than long term studies. More treatments will probably yield more results after what I've seen online. <br /></p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTrp83jk3zemsOYqXLlVrjdFsJMtHjIYQGCu6lGZW279DxuUbP28XxCVdf1NwjfQTrEfoTAeRbJybUqf2_ML1oNAAgNGbzhTVbqLm0PE9mswRKETRe_5wwvwsTU0TwdYLGe07POzRRFXQ/s1600-h/officialbeforeafterstemcells.JPG"><img style="cursor:pointer; cursor:hand;width: 370px; height: 373px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTrp83jk3zemsOYqXLlVrjdFsJMtHjIYQGCu6lGZW279DxuUbP28XxCVdf1NwjfQTrEfoTAeRbJybUqf2_ML1oNAAgNGbzhTVbqLm0PE9mswRKETRe_5wwvwsTU0TwdYLGe07POzRRFXQ/s400/officialbeforeafterstemcells.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5380304768360015458" /></a></p><p>I have compiled the audiograms from the above information to make it easier to read! This audiogram shows both before and after on the same audiogram. It's crowded and I think I made a couple minor mistakes when compiling that audiogram. But the general idea is you can see that he improved in every frequency! Look how far up he hears at 250Hz! Wow!</p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpTST81YzPvcfdW6aKyjUz1EnkgKra809t0EZuDA9eOiLkJv3N8Efg5ysqmQD2diNPnJj6X5mQW6J8bwHS9W0ZZuSb9-XoefN0FliDOeg4prn0VO95PxulygrOncDBMOMpcrSjXM43H4s/s1600-h/officialbeforestemcells.JPG"><img style="cursor:pointer; cursor:hand;width: 370px; height: 373px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpTST81YzPvcfdW6aKyjUz1EnkgKra809t0EZuDA9eOiLkJv3N8Efg5ysqmQD2diNPnJj6X5mQW6J8bwHS9W0ZZuSb9-XoefN0FliDOeg4prn0VO95PxulygrOncDBMOMpcrSjXM43H4s/s400/officialbeforestemcells.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5380304838096901090" /></a><br /></p>This is his "before" audiogram. It's considered a left corner audiogram and his <strong>good</strong> ear is as bad as both of my ears! His bad ear is dead in all frequencies from 500Hz and above, notice the arrows pointing downwards at the audiometer's limit of 110db HL? Even his good ear is dead above 1000Hz. I know what this is like as this is what my current level of hearing is.<br /><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXo3vo25sX92aAkRNcaFW2g1V5vjrSX22buRsYgVcadNmmtb6g948pEO8da64Rc9lYS_57nOI2nMatQmF6Xd6agNRsnjM4kytXpOfCgFHhT9MdV4WriRAiIaUjVIVpnYTvgLo5_xlQ9B4/s1600-h/officialafterstemcells.JPG"><img style="cursor:pointer; cursor:hand;width: 370px; height: 373px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXo3vo25sX92aAkRNcaFW2g1V5vjrSX22buRsYgVcadNmmtb6g948pEO8da64Rc9lYS_57nOI2nMatQmF6Xd6agNRsnjM4kytXpOfCgFHhT9MdV4WriRAiIaUjVIVpnYTvgLo5_xlQ9B4/s400/officialafterstemcells.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5380304900837578018" /></a></p><p>This is his after audiogram! He achieved as much as 30db improvement in some frequencies! I was shocked and amazed at his excellent result at 250Hz in the left ear. Hearing unaided at 40db is just amazing! I was hearing at 35db at 250Hz sloping downwards to nothing in the higher frequencies with my old Widex Senso hearing aids! I am so excited to soon get the chance to be hearing unaided better than what many profoundly deaf hear aided! I showed this to my dad and he's all excited for me too! He said that is amazing hearing and I would hear some sounds/speech unaided and with HAs, I would hear alot more speech than I currently do!</p><p>Although he responded to every frequency after stem cells, his left ear may still be dead at 1000Hz and above. If they tested 750Hz, he may still have some usable hearing there. Before that, he probably had no usable hearing above 375Hz. So gaining a full octive of hearing is impressive! His right ear improved so much at 1000Hz, it's actually better than at 500Hz(and possibly at 750Hz too!) He has good, usable hearing to at least 2000Hz, possibly even 3000Hz to 4000Hz! We don't know what he's scoring on speech, but we know that stem cells has drastically improved his ability to understand speech, hear sounds, appreciate music and has given him higher frequency hearing which he lacked before!</p><p>Let's go over the facts and myths of stem cells!</p><p>1. Myth: Big deal, so youll get a 5db or 10db improvement.</p><p>Fact: Uh, no. You can get a 30db improvement with today's stem cells and in 3-5 years from now, many deaf people will be seeing more than 40db improvements!</p><p>2. Myth: Stem cells is risky.</p><p>Fact: Mesenchymal stem cell(MSC) unlike hematopoietic stem cell(HSC) does not produce immune response. Therefore does not require match. No one has ever died or became very ill due to stem cell complications out of over 5000 patients who have gotten stem cells for all kinds of diseases. Stem cells is far safer than any drug or surgery and is rapidly becomming the top choice to treat diseases.</p><p>3. Myth: Stem cells for deafness won't occur for at least 30 years.</p><p>Fact: Oh really? It's here now! Some labs have been using stem cells to improve hearing as early as 2006. This four year old was treated in 2009 and it's expected that we will see dozens, if not hundreds of people treated and have their hearing improved with stem cells in 2010 and beyond.</p><p>4. Myth: Big deal, cochlear implants are better.</p><p>Fact: Today, as of 2009, only in some cases but not for much longer. Stem cell technology is only a few years old. Cochlear implant technology is a few decades old. It wasn't till 2005 that cochlear implants became good enough that those who actually still had a little residual hearing were finally candidates. Before that, only those with no residual hearing or so little residual hearing that you scored 0% on speech were CI candidates. I suggest you view the <a href="http://deafdude1.blogspot.com/2009/08/stem-cells-is-superior-to-cochlear.html">advantages of stem cells</a> over cochlear implants.</p><p>5. Myth: Stem cells is unaffordable.</p><p>Fact: The price is estimated at $30,000 for stem cells and that already includes travel and other costs. A cochlear implant costs twice that per ear and even if insurance covers that, youd still need to spend a fortune to get a 2nd CI. We all pay with higher insurance rates for something that's borderline elective anyway. I hope insurance doesn't pay for stem cells other than for diseases that could be fatal. No one has ever died from being deaf. Go and save the money yourself or take out a medical loan. Let us afford insurance to treat life saving diseases!</p><p>6. Myth: Stem cells won't cure your deafness.</p><p>Fact: Not yet, but as stem cell technology matures, it becomes a question of when, not if. The timeframe could be 5 years, 15 years or even 50 years before enough hearing is restored to make you hearing. This is defined as 25db(average) across the audiogram and 85% speech accuracy. It's been observed that even in birds who have a wonderful, natural ability to restore hearing, a 23db HL was the best possibly achieved. Many birds were mildly to moderately hard of hearing, although still not considered deaf.</p><p>7. Myth: I have no residual hearing so stem cells is hopeless!</p><p>Fact: Today's stem cell technology can restore a total hearing loss(125db HL arbitrary value) down to the 90-100db range. Severe degrees of hearing loss may be improved to as good as 40-60db. You would hear with HAs far better than CI with this much hearing. Remember that a normal hearing person has 15,000+ high quality hair cells per ear and can hear 0-10db HL to 16-20KHz for children and 10-20db HL to 12KHz for adults. Stem cells currently can regrow several hundred medium quality hair cells which work alongside your existing low and medium quality hair cells. Too many hair cells would only cause you to hear worse! Bird's regenerated hair cells were of medium quality unlike the originals which are high quality.<br /></p><p>Further comments from me: I plan to travel and get stem cells to improve my unaided and aided hearing. The estimated timeframe will be 3-5 years as I am going to wait till hundreds of others get stem cells before me. I want to see results, audiograms, facts, blogs, etc from the pioneers who go before me. My friend Phi4sius says I may see enough results in less than 2 years for me to go ahead. He's going ahead soon. I look forward to his result and hope he improves alot in his dead ear!</p><p>For those of you who say I could get cochlear implant(s) now, I would rather have stem cells even today than a cochlear implant and for good reasons. If some stem cell lab was willing to take me on as a case study at no cost, I would seriously consider! Otherwise I am not in a hurry unlike the parents of that 4 year old. I don't know why the parents couldn't wait a few more years, maybe they were afraid he was falling too far behind on speech development? He might not have had enough residual hearing like I did back then to develop speech and speak clearly. Well stem cells addressed this and his hearing is much better than mine ever was! His parents didn't want to put him thru surgery for a CI. My dad commented that stem cells even today is the better(and arguably safer) choice since you avoid scary surgery! Stem cells can be administered by an injection or IV. </p><p>I am waiting a short while because results(and safety) will only improve. I can't afford to spend $30,000 to get it every year. The first time I get stem cells will be for around 40db improvement and the next time I get it will be for enough improvement to let me hear without HAs. I will post more as I get more news and audiograms of others who are pioneers in stem cells. This will give us a better idea of how much improvement to expect among other fators. Thanks for reading. I am so excited for those who improve their hearing and for my day to come!</p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com107tag:blogger.com,1999:blog-7613875314868339925.post-10805371400432928862009-08-23T03:11:00.006-04:002009-08-30T11:45:19.750-04:00Stem cells is superior to cochlear implants. Well worth the wait!<p>I was discussing with my friend about stem cells vs. cochlear implants and how stem cells will be so much better. After all, stem cells can improve hearing and eventually make you hearing! Cochlear implants are just an aid to give a profoundly deaf person access to sounds but don't come close to natural hearing. I did talk about the fact I might get CI in 3-5 years but seeing that stem cell technology is advancing much faster, ill probably get the chance to get stem cells by then, that's my choice. I have made many valid points for my choice. Below are the advantages and disadvantages for your reference.</p><p><span style="font-size:130%;">Advantages of stem cells:</span></p><p><span style="font-size:130%;">1. Hear unaided</span></p><p>Perhaps the biggest advantage of them all and something I desire the most! Even a partial improvement of as little as 20db(although ive been told 40db is likley) will give me some ability to hear instead of the silent world I now experience. I get excited just thinking about this! It's going to be so surreal to hear something, reach for my HAs and find they aren't there! This is something cochlear implants can never, ever achieve. In fact, most people actually lose their residual hearing and thus their ability to hear even the loudest sounds. They can never go back to HA if CI doesn't work for any reason as CI usually wipes out your residual hearing. Even those who keep some residual hearing usually end up losing it within a year. Hybrid CIs are a failure for the same reason. Save your residual hearing for stem cells to improve upon that! CI never made sense for anyone with residual hearing but I, my audiologist, parents and friends admit it's great for those with no(or very, very little) residual hearing. No HA would help since you need residual hearing(110db max HL) to amplify.</p><p><span style="font-size:130%;">2. Lower cost</span></p><p>Cochlear implants cost $50,000 per ear of which $35,000 is due to the surgery to implant. Insurance may sometimes subsidsize the cost for one implant. Many feel "one sided" with only one CI but can't afford the out of pocket cost for a 2nd CI which insurance rarely covers. No one knows what role insurance will have in covering stem cells, im guessing they will cover deaf babies and young children. They are very unlikley to cover HOH people since they are very functional with any decent HA and they can still hear some sounds/speech unaided. Also there's way more HOH people than deaf people and insurance can't afford this.</p><p>Older children and adults can take out a low(or even no) interest medical loan for the $20,000-$30,000 cost of getting both ears done with stem cells and pay off the loan over a decade. Many others may be able to get some financial support from (hearing) family and friends in the form of gifts and interest free loans. My parents will help me afford stem cells as they know how great it's to be hearing.</p><p><span style="font-size:130%;">3. Lower risk</span></p><p>There's many associated risks of cochlear implants, surgery being the biggest risk. This is one reason I am not keen on getting CI. Neither my parents nor audiologist recommend CI for me either. Ive seen people develop all kinds of complications and infections including meningitis(vaccines reduce that one risk) damage to nerves and allergic reactions. Nerve damage may cause permanent numbness to the face, twitching of the eye, loss of the sense of taste and constant pain. The materials, including silicone in the internal CI can cause adverse affects. Silicone is toxic to everyone and should never be in the body! I read a blog of a lady who was allergic to the external speech processor and no one could remedy this so she was forced to stop wearing her CI. You also take the risk of being unable to get a MRI or other medical procedures that may ruin your internal CI. </p><p>Stem cells that are derived from your own skin/blood are risk free, your body will never reject your own stem cells! The process may be as simple as having a small vial of blood removed or a piece of skin scraped from your inside cheek or arm. Your cells are then processed into adult stem cells and injected(or inserted by IV) back in your arm. About the only risk is failing to improve your hearing. No residual hearing should be destroyed so you can go back to HAs and hear the same as before.</p><p><span style="font-size:130%;">4. Wide acceptance</span></p><p> Once stem cells become mainstream and FDA approved, they will be accepted by 99.9% of hearing people and by 90% of deaf people. The deaf has learned to accept HAs and more recently CIs. They too will learn to accept stem cells for it's wonderful ability to let you hear sounds and speech. </p><p><span style="font-size:130%;">5. Reduce tinnitus</span></p><p>Since tinnitus is very often associated with hearing loss, restoring your hearing even in part will also reduce your tinnitus. Ive read of people that find their tinnitus more annoying than their hearing loss and would trade away the rest of their hearing if they could live in peace without any tinnitus. With stem cells, they get to restore their hearing and reduce tinnitus! Cochlear implants have been known to make tinnitus worse!</p><p><span style="font-size:130%;">6. Reduce recruitment</span></p><p> All deaf/HOH people experience recruitment where amplified sounds can quickly become too loud. Hearing people don't have this problem. Cochlear implants can also get around recruitment but not as well as actually restoring your natural hearing. I know people who still experience discomfort with loud sounds and are forced to turn their maps down. Their ability to hear decreases as well. </p><p><span style="font-size:130%;">7. Best hearing</span></p><p>There is no argument that stem cells gives the best possible hearing. For those unhappy with how poorly they hear with powerful HAs and are considering a CI, they know that stem cells can do way better. After all, CI is just a tool like HAs but only stem cells is a cure. Even those who don't want to be cured of their deafness and become hearing, they can get a lower dose of stem cells and become less deaf. They will then hear better than CI with the right HAs programmed correctly and even if not, they can always get more stem cells! Cochlear implants gives aided hearing comparable to what a severely deaf person gets with HAs. I hear worse(not in the lows though) than what most hear with CI since im profoundly deaf(at 500Hz and above) but this will change when I get stem cells and ill hear better than almost all CI users. When I get stem cells a 2nd time, no CI in the world will even come close.</p><p><span style="font-size:130%;">8. Waterproof</span></p><p>This is another huge advantage for stem cells that no CI(except for the rare totally internal CI) or even HA(I did read of a waterproof CIC HA, but won't help the deaf) can achieve. When I shower, my hair needs 2 hours to dry so I can't wear HAs during that time. When I prespire, I must remove HAs or risk ruining them. I have to stay out of the rain and other wet situations unless I remove my HAs then of course I hear nothing. I would love to experience swimming(pool, lake, ocean, waterpark) and showering with sounds! It would be so surreal! </p><p><span style="font-size:130%;">9. Convenience </span></p><p>I won't have to deal with any of the hassles of HAs, you won't have to deal with CIs. People get lasik, prk, intacs, iols so they can reduce or even eliminate their dependency on glasses. The same will be said for stem cells to reduce or even eliminate dependency on hearing aids! I like HAs because they give me access to sounds but I won't miss them when I am hearing. No worries about feedback, molds, discomfort, changing batteries, repair, avoiding water, etc. Just pure, natural unaided hearing! CIs are just as inconvenient as HAs if not more so. The batteries only last a day or two, the processor is larger, heavier, more fragile. There's a cord and magnet to deal with as well. I often go without HAs when im alone because it's so much more convenient. I only wish I could hear some sounds without HAs! Those of you with more residual hearing than me are so lucky! </p><p><span style="font-size:130%;">10. Reliablity</span></p><p>Face it, HAs and CIs are subject to failure or glitches. Of course stem cells won't prevent hearing loss but as long as you avoid loud noises and stay healthy, your hearing will remain and last way longer than your HAs or CI. I have had to get my HAs repaired about once every 3 years on average. For most people, their hearing lasts a lifetime with only the usual high frequency loss due to presbycusis. They can get stem cells for that when stem cell technology is mature.</p><p><span style="font-size:130%;">Disadvantages of stem cells:</span></p><p><span style="font-size:130%;">1. Blissful silence</span></p><p>That's about the only real disadvantage. You will be hearing 24/7 if you choose a full restoration of your hearing(25db or better) I was just thinking that alot of deaf people would go for a partial restoration and become less deaf. They would hear with powerful HAs better than CI for cheaper and less risk, yet still enjoy silence without HAs! Initially, stem cells won't be able to restore hearing in full but will be able to several years later. CI will be phased out so for the deaf who were looking to CI to hear more, they can go ahead and get stem cells or just live with what little residual hearing they have. That's your choice and I respect this, just respect my choice to improve my hearing as much as possible and I choose stem cells because it's so much better than CI.</p><p>I may get stem cells 2 or 3 times depending on the cost and extent of improvement. The first time, I expect at least 20db improvement but may achieve 40db. The second time, I would prefer to get down to normal or near normal hearing. If I end up with near normal hearing, say 35db loss I may decide not to get stem cells a 3rd time since any further improvement would be small and not worth the $20,000+ cost when for $2000 I can get mini open fit HAs that will aid me to 0-10db HL. I won't need HAs but wear them whenever I feel like and I can turn the HAs off to make very loud sounds much softer. I will decide when that time comes. For now, I have decided that ill get stem cells and can decide later if I want a repeat when stem cell technology matures.</p><p><span style="font-size:130%;">2. Deaf culture</span></p><p>The Deaf fear the loss of their culture. They could get stem cells to be less deaf and not have to experience any of the disadvantages they can come up with. Cochlear implants didn't destroy their culture, stem cells might not either. There may be less deaf people since stem cells will be very popular for deaf babies born to hearing parents. Itll also be popular for late deafened adults and for the "oral only" deaf like me.</p><p><span style="font-size:130%;">3. Few year wait</span></p><p>Stem cells is highly experimental today with only a few anecdotal reports. This "disadvantage" will go away after a few years. Those who are against hearing restoration which includes most Deaf people today say the wait is 20, 30, 40+ years or even that we might never live long enough to experience any restoration of our hearing. Guess what? It's already happening! My friend knows someone who got a 25db improvement in his hearing at a clinic in Costa Rica. Human clinical trials on children/babies under 18 months has begun! My friend says give it 6 months before we see human adult clinical trials and he will be a pioneer, getting stem cells first chance he gets. I will get stem cells after I see it on the news and read testimonals from the pioneers who are among the first, ill be right after those guys.</p><p>The saying goes "the time to hear is now" but keep in mind that those with CI may have to wait a decade longer before stem cells becomes advanced enough to repair the damage that CI causes. For one, you kiss your residual hearing bye. A 40db improvement for someone with an infinite loss might get you to 90db loss. But if you kept your 90db loss, you could be enjoying a 50db loss! The electricity CI uses can cause cochlea scarring gradually. Some fluid is removed from the cochlea to make room for the electrodes. Id rather just skip CI and wait 5 years for stem cells than get CI and have to wait 15 years for stem cells, but the choice is yours. Thanks for reading and feel free to ask questions or comment.</p><p><span style="font-size:180%;">Update! </span></p><p><span style="font-size:100%;"><a href="http://www.soundpharma.com/index.html">Hearing regeneration with pills?</a></span> They project 2010 as the year for human clinical trials! This could present another option besides stem cells!</p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com79tag:blogger.com,1999:blog-7613875314868339925.post-84773282865544446782009-08-16T00:31:00.009-04:002009-08-16T06:58:15.632-04:00Stem cells for deafness begins human trials? Great news!Check this <a href="http://www.cordblood.com/regenerative-medicine/hearingloss.asp">website!</a><br /><br />Center Announces Hearing Loss Study<br /><br />CBR is collaborating with three leading medical institutions to initiate a clinical study within the next few months that will evaluate the use of a child's own newborn stem cells to treat hearing loss caused by an accident or severe illness.<br /><br />---------------------------------------------------<br /><br />My friend says clinical trials are being planned or may already be underway to treat hearing loss and other conditions in children using their own cord blood. Adult trials could occur next year, according to him. He already applied to be on the list and wants to be a pioneer for the first adult human deaf clinical trials. I give it 3-5 years. The wait is not so long, certainly not "decades" like some experts say to appease the Deaf who would oppose everything that treats hearing loss.<br /><br />Stem cells is already being used for dozens of different diseases/conditions of which hearing loss is one of them. He wanted a cochlear implant but after learning that a hearing loss treatment is around the corner, he canceled the CI appointment and is going to wait for the real thing. He says if he isn't accepted to a clinical trial, he will just travel and get it done in another country. He's sick and tired of being deaf and not hearing good enough with HAs.<br /><br />Hes currently emailing doctors and scientists for additional information and when they will perform their own trials. Adult trials will either use cord blood stem cells(making sure it's a good match) or your own adult stem cells which can be harvested from your skin/blood. Countries like China have been treating deafness/hearing loss for over a year now. The improvement is supposed to be on the order of 20-30db today but this will increase as stem cell technology matures. Ultimately normal hearing of 25db or better will be attained.<br /><br />He told me that cochlear implants will be obsolete shortly after we hear news all over of success with hearing loss stem cells. He says those who got CI recently will be furious/irate that they didn't wait just a little longer. He also says that a CI damages/destroys all your residual hearing and other parts of the cochlea making your chances of ever being able to benefit from stem cells in the implanted ear poor. He's recommending anyone with residual hearing to save their ears and have a little patience for stem cells.<br /><br />We also talked about it becomming mandatory for all deaf/hoh babies to get their hearing loss treated once stem cell technology is mature, could be 20 years from now. Just about all hearing parents will be more than happy to have their baby be hearing. Some deaf parents may oppose this which is selfish and unfair when such a safe, easy treatment is available.<br /><br /><p>There are so many advantages to stem cells over cochlear implants that it's worth the 3-5 year wait. He says itll be just a year. The cost will be perhaps $15,000 for both ears, the risks will be much less and the rewards much greater. He also believes that while todays stem cell technology can partially restore your hearing, in the near future youll be able to fully restore your hearing. I say this remains to be seen, it's a question of when, not if. But he knows about realistic expectations and we would be very happy to achieve a 20db improvement initally and later on achieve further improvements as stem cell technology matures.</p><p>Imagine that today is the year 2012 and that stem cells is being done on humans with great results. A such example would be something as shown below(see audiograms) from what we know so far. We know very little and still don't have a real answer on the date and such but im hearing from a growing number of people and the number of anecdotes is rapidly increasing. At this point, it is almost certain that before 2020 we will see large numbers of people getting stem cells. The wait is on the order of a few years, not decades! My parents are very excited for me and my dad will help me afford stem cells, including making the trip to another country if I can't get into a clinical trial in America.<br /></p><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwjQEsnffGgzFGVw11p8sE3T0Cpkj63-gmCgb1Vv6LubUvG19YgkD-rq-gzgSX2Fd0lXUf81LV7lp1NLorDY_vyRKq_RXCJBHjFpXhoII8T16S21mj-9x8m33iUiI6bLKfY4Orie13a5I/s1600-h/beforestemcells.JPG"><img style="cursor:pointer; cursor:hand;width: 370px; height: 390px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwjQEsnffGgzFGVw11p8sE3T0Cpkj63-gmCgb1Vv6LubUvG19YgkD-rq-gzgSX2Fd0lXUf81LV7lp1NLorDY_vyRKq_RXCJBHjFpXhoII8T16S21mj-9x8m33iUiI6bLKfY4Orie13a5I/s400/beforestemcells.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5370467492999628482" /></a><br /><br /><p>This person wishes to hear better. Even with max gains(Deafdude: Max gains improved my speech by 20%!) on his HAs, his hearing still isn't that great. His unaided audiogram is very similar to mine and is typical for profound losses. Aided he hears great in the lows(Deafdude: That's one reason I skipped CI) but it takes a nosedive above 500Hz in both quantity and quality. His mid frequency hearing, like mine is very poor and his highs are nonexistant. He is glad he saved both ears for stem cells instead of destroying/wasting it with CI.(Deafdude: I am not against CI if you already have no residual hearing to risk) His old audiologist had recommended he wait a few years for stem cells and that a CI would probably disqualify you from being able to get stem cells for many reasons. The audiologist also pointed out that CI will soon be obsolete and no longer manufactored nor supported. </p><p></p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiudU2l-EGzWh0GkklNDc6QiCYCGwQizw1DAEa9Nfto6gICNQC24JgawC911eQk6-WRCFJ0-VI2e75eya-dqWmPHbl7kHAEbyIk-HCM8UF2XR8vwbW1tnaBlHZHGP62A_Mm6uriUBG5xfI/s1600-h/afterstemcells2012.JPG"><img style="cursor:pointer; cursor:hand;width: 370px; height: 390px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiudU2l-EGzWh0GkklNDc6QiCYCGwQizw1DAEa9Nfto6gICNQC24JgawC911eQk6-WRCFJ0-VI2e75eya-dqWmPHbl7kHAEbyIk-HCM8UF2XR8vwbW1tnaBlHZHGP62A_Mm6uriUBG5xfI/s400/afterstemcells2012.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5370467667246160226" /></a><br /><br />He got the stem cell treatment and begin to improve. He is so glad he resisted the temptation for CI and saved his residual hearing in both ears. Some of his friends got CI and are happy with CI(Deafdude: I give CI the credit it deserves for those with no residual hearing) but won't be able to benefit from stem cells in the implanted ear.(Deafdude: More and more of my friends are skipping CI for stem cells) When all the hair cells have settled down in their new home in his cochlea, he noticed a very drastic improvement(Deafdude: A realistic improvement is 20db) in both unaided and aided hearing with the same HAs he had prior to the treatment. His HAs were reprogrammed with less than max gains in the lows as not to overamplify.(Deafdude: HAs can't give better than baseline of 0db HL) He hears better than CI at 1000Hz and below. His speech score is almost as good as those with CI! He can still attain further improvement so he will return when stem cell technology matures.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4gOOpHPUkwLXcuMFLOBlDegKq4xt_DvYvTIA-waGAYm_LVwwFtBX27TVt7DmNCpRYjwEQran2XMwdDXJ_QQB8WylgM3LWvT1TB4_W-j0rhBFVLRtEDybpIAc8j8AmJA6PcPoN0iOR3os/s1600-h/afterstemcells2015.JPG"><img style="cursor:pointer; cursor:hand;width: 370px; height: 380px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4gOOpHPUkwLXcuMFLOBlDegKq4xt_DvYvTIA-waGAYm_LVwwFtBX27TVt7DmNCpRYjwEQran2XMwdDXJ_QQB8WylgM3LWvT1TB4_W-j0rhBFVLRtEDybpIAc8j8AmJA6PcPoN0iOR3os/s400/afterstemcells2015.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5370467778534257282" /></a><br /><br />True to his word, he returned about three years later and achieved another huge improvement even though there's diminishing returns in the lows. He knows that stem cells can't give him normal unaided hearing. Even <a href="http://hearinglosshelp.com/articles/haircellhype.htm">chickens/birds</a> with their amazing natural ability to regrow hair cells still end up with a mild hearing loss! Given the fact he finds high frequencies annoying(Deafdude: My hearing friends and family cover their ears) and that very little sounds/speech takes place above 2000Hz(Deafdude: As I learned from my dad and others) and also the fact he hears way better than the now obsolete cochlear implant technology, he is leaving well enough alone on his doctor's advice. Getting more hair cells would not achieve much, if anything and risk hearing worse in the lows due to overcrowding. Too many hair cells living in your cochlea is as bad as too few!deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com38tag:blogger.com,1999:blog-7613875314868339925.post-64694434793629832982009-08-09T19:19:00.012-04:002009-08-11T01:55:35.058-04:00All my audiograms thus far with my comments on them!My audiograms are shown below. Click on each to enlarge.<br /><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ-xA3t-RNqUEdBS9lVWK1hagqfO8UIzxGzafNbSKhw_5WIcESz1cQ5sT7CgKfq_feFPkNsyAedOcHYoNeWgtUGlRdHtDkvewazdsf6qzU58VCxSAQlenvmue_cT2z2bWXg92SktWpEfU/s1600-h/scan5.JPG"><img style="cursor:pointer; cursor:hand;width: 281px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ-xA3t-RNqUEdBS9lVWK1hagqfO8UIzxGzafNbSKhw_5WIcESz1cQ5sT7CgKfq_feFPkNsyAedOcHYoNeWgtUGlRdHtDkvewazdsf6qzU58VCxSAQlenvmue_cT2z2bWXg92SktWpEfU/s400/scan5.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5368110332467123474" /></a></p><p>This is the oldest audiogram I can find, its from 1998. That audiogram did say I have a stable profound hearing loss so I assume it was the same on previous audiograms. Maybe the audiologist somehow kept a copy before 1998, we will have to call around and find out. I can tell you that I didn't hear unaided even when I was little so I certainly wasn't HOH but deaf since birth.<br /></p><p>I do wonder if I had cochlear dead zones in the high frequencies. I do remember being able to hear birds and whistles so I probably was still able to hear 3000Hz. My aided hearing took a big dip past 1500Hz despite my unaided hearing being flat. My dad says the audiologist programmed maximum gains in the mid and high frequencies but did turn the gains down a bit at 250Hz, that's why im missing out in that frequency :(</p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV7e1yMIcQ9jsuQfqgRBDvBMz26NAMvcbf-kTjGNHeMO7DwE2MQxofBwWvuEI8mZLrMftps9DITi2s5lrZ-HVV6poac6efemcnJWPSGRFcj56KU7LHCam3mhJ2zCqqrBYcUpiaQJxxt-A/s1600-h/scan1.JPG"><img style="cursor:pointer; cursor:hand;width: 398px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV7e1yMIcQ9jsuQfqgRBDvBMz26NAMvcbf-kTjGNHeMO7DwE2MQxofBwWvuEI8mZLrMftps9DITi2s5lrZ-HVV6poac6efemcnJWPSGRFcj56KU7LHCam3mhJ2zCqqrBYcUpiaQJxxt-A/s400/scan1.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5368110078427651746" /></a></p><p>My mom found this audiogram in July 2009. I was shocked and surprised to see that I had no residual hearing above 500Hz! The arrows point downwards at 750Hz and up at the 110db max(90db max at 8000Hz) that this audiometer was capable of outputting. I was also shocked how much worse my hearing got! I never noticed that I lost what little high(er) frequencies I had! This means there's so few sounds that are high frequencies I never noticed I lost them!<br /></p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRBXgkgjuohRn6y3zvSOUGnDRXRqoMQPGBd9Ezm-RwihOtiEk1IGM_2eauPnS9ZmJOD6xw7llDGZpBoTHa6LuWtafyJKR0RggpDTvU1ewO8knEHhXZvvK9EEV9vxEep8ksJfOMBGlE8xM/s1600-h/scan2.JPG"><img style="cursor:pointer; cursor:hand;width: 356px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRBXgkgjuohRn6y3zvSOUGnDRXRqoMQPGBd9Ezm-RwihOtiEk1IGM_2eauPnS9ZmJOD6xw7llDGZpBoTHa6LuWtafyJKR0RggpDTvU1ewO8knEHhXZvvK9EEV9vxEep8ksJfOMBGlE8xM/s400/scan2.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5368110178095408386" /></a></p><p>My aided audiogram taken 20 days later. My unaided audiogram was input from 20 days ago, I don't think they retested my unaided hearing. My aided hearing at 250Hz remained the same 35db as it was in 1998 but it took a huge dive in the other frequencies. I am surprised at only hearing 50db aided with 95db unaided when I heard 30db aided with 90db unaided in 1998!<br /></p><p>I am also surprised I heard aided to 3000Hz when I had no unaided hearing past 500Hz! Perhaps this was a false response due to cochlear dead regions? I am impressed I could understand some words on a speech test with such poor aided hearing! It goes to show how important the low frequencies are!</p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbBdhdYTZW_I6xHqR5MqTMSqk0iYj-vGvLzxTXVy1xG7CYt2oA3kvgrHLduY0s-PtHkPGphLxhmue0M_sb5XrQlACOPJQDOOjVCwqrxeM0rvfSe6N-_BtLHQbteDzENUTs0h8DkoHXZkM/s1600-h/scan3.JPG"><img style="cursor:pointer; cursor:hand;width: 368px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbBdhdYTZW_I6xHqR5MqTMSqk0iYj-vGvLzxTXVy1xG7CYt2oA3kvgrHLduY0s-PtHkPGphLxhmue0M_sb5XrQlACOPJQDOOjVCwqrxeM0rvfSe6N-_BtLHQbteDzENUTs0h8DkoHXZkM/s400/scan3.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5368110229916104946" /></a></p><p>I was surprised at that 65db threshold at 250Hz! I also recorded better thresholds across the audiogram compared to 2002! Surely my hearing didn't improve? Maybe those are just false positive responses due to cochlear dead zones above 750Hz.<br /></p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis6AF4hV5phPJHG1TSQJmONHurp30LHS8qNCiu6zSOcigyeobJA7eBW8irE0OL7BPMMsfBHTAT8vMSjOFYIVCe_CjzvHKMPdHJuZRH9BoSslCYFsPWO-Q7X60Yf9q9M3NuHuL9xw5Xq3M/s1600-h/deafdude1_audiogram.JPG"><img style="cursor:pointer; cursor:hand;width: 400px; height: 399px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis6AF4hV5phPJHG1TSQJmONHurp30LHS8qNCiu6zSOcigyeobJA7eBW8irE0OL7BPMMsfBHTAT8vMSjOFYIVCe_CjzvHKMPdHJuZRH9BoSslCYFsPWO-Q7X60Yf9q9M3NuHuL9xw5Xq3M/s400/deafdude1_audiogram.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5368111545021540674" /></a></p><p>This left corner audiogram is from September 2008. My hearing falls off the bottom in the higher frequencies. Pretty much identical to my 2002 audiogram. The audiologist then said that no HA would touch a 120db loss and that he recommends CI. The next day he retracted his recommendation after seeing that I got some benefit from the new Phonak Naida HAs. I still hear pretty good in the lows.<br /></p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIV-7OvrAI6Pc8CeSWA03LR6MIWO6V5seoDGR6SqqS4llJcKGKhR5FzDrkppPTabUqdTSGp4ADwHnH6UDjpQgbZ3fzlbG7IdVFADbW8P-3cI-JYqiGd5QJQcO2ZxCeUAQZ2p02lIvqxm0/s1600-h/scan4.JPG"><img style="cursor:pointer; cursor:hand;width: 353px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIV-7OvrAI6Pc8CeSWA03LR6MIWO6V5seoDGR6SqqS4llJcKGKhR5FzDrkppPTabUqdTSGp4ADwHnH6UDjpQgbZ3fzlbG7IdVFADbW8P-3cI-JYqiGd5QJQcO2ZxCeUAQZ2p02lIvqxm0/s400/scan4.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5368110279558114434" /></a></p><p>I was surprised at the poor scores at 250Hz. Ive tested my hearing on several occasions after this audiogram and I can hear 70db at 250Hz. My aided 250Hz hearing is way better than 35db, I know because I hear 250Hz louder and further than 500Hz at home on my speakers. That audiometer needs to be recalibrated at 250Hz. However my other scores are accurate.<br /></p><p><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqYarb-AYwTzF3uhqUG7eHmSTSfD1xBek_or371-rla31FEp7N27qMkKyicFf5SbnXzP2RwwQJGLoAQmtM00HDWnCbM2YGEMjgTguyZd29esQ2m0JuU3Q3-MBZoctvtrEEeDz0UqI-2PE/s1600-h/audiogramdirect1.bmp"><img style="cursor:pointer; cursor:hand;width: 364px; height: 364px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqYarb-AYwTzF3uhqUG7eHmSTSfD1xBek_or371-rla31FEp7N27qMkKyicFf5SbnXzP2RwwQJGLoAQmtM00HDWnCbM2YGEMjgTguyZd29esQ2m0JuU3Q3-MBZoctvtrEEeDz0UqI-2PE/s400/audiogramdirect1.bmp" border="0" alt="" id="BLOGGER_PHOTO_ID_5368112159194613954" /></a><br />This audiogram from July 2009 was taken in-situ with audiogram direct, a feature my HAs support. My unaided hearing is 120db at 1000Hz and up. The aided scores are a home test with my speaker but they make sense given how much gain my HAs were programmed for. I plan to have another aided test in a soundfield for official scores now that my HAs have been reprogrammed. Ill edit this post with all future audiograms.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com2tag:blogger.com,1999:blog-7613875314868339925.post-87052136212653040242009-08-08T22:32:00.009-04:002009-11-22T15:54:58.438-05:00I might get CI in 3-5 years, need to learn more! My thoughts posted here.<p><p>Ive been thinking to myself about my future plans. There's still so much I need to learn about CI and so much more I need to research. Ive read many CI blogs and most with CI have a positive experience. But I just got done reading her <a href="http://bionically.wordpress.com/">negetive</a> experience. Although she did hear better with CI, she experienced complications with her CI and has stopped wearing her CI. She started wearing it again but is still experiencing problems and has stopped again. She also is sad to <strong>lose</strong> her residual hearing. I hope she can have her problems addressed and be happy with CI again. I do wish her well.</p><p>You may ask what happened to my plans for stem cells? The plan is still in action but no one yet knows when human clinical trials will begin. I plan to get a CI consultation in 2 years or so and if CI technology in 3-5 years can meet all my requirements <strong>and </strong>stem cells isn't around the corner by then, ill get one ear implanted and save the other one unless I lose all hearing in that ear.</p><p>Right now I have a 70-75% chance of improvement with CI over what my HAs can deliver. That comparsion was made with my current HAs programmed for maximum gains. I definately plan to try different HAs before getting CI. It makes me <strong>sad</strong> to see some people skip this important step. What if better HAs improve your speech from 20% to 70% or lets you hear 0db at several frequencies? Some of you do have enough <strong>residual</strong> hearing to accomplish just that.</p><p>Ive checked previous audiograms and my hearing has gotten worse. Ill post all my audiograms in another thread very soon. This is very<strong> important</strong> information for myself and for everyone reading to learn. I expect my hearing to slowly get worse and I might not hear above 500Hz a few years from now. In fact my 2002 audiogram shows no residual hearing above 500Hz but more recent audiograms place my loss in the 110-120db range above 500Hz. I will need a <strong>TEN </strong>test for cochlear dead regions.</p><p>Cochlear dead regions deserves it's own thread. But from what ive read, it's very interesting. A dead region is where you have no hair cells left and no residual hearing. You could still respond on the audiogram but the response is<strong> false</strong> and in fact arises from off-frequency stimulation. For example, a 120db stimulus can be heard by me as high as 2000Hz. But am I really hearing 2000Hz or are my hair cells at perhaps 500Hz responding? The piano thud test shows my hearing is "good" to 900Hz and goes downhill fast and ends at 1200Hz. Speech tests show pratically no benefit above 500Hz, any hearing above 500Hz doesn't really improve my speech score for some reason. Ill post about that in detail on another thread.</p><p>Ive been told that a CI should and probably will significantly benefit me today. My math places around a 3 out of 4 chance of hearing better with CI based on how much residual unaided hearing I have on a recent audiogram. You see, the more residual hearing a person has, the more benefit he will get from HAs. If I can hear 50db aided at a certain frequency and someone has 30db more residual hearing(say 90db vs. 120db) that person could be hearing 20db and not only that, the <strong>quality</strong> would improve since there's alot more surviving hair cells! There's some people who got CI who's audiograms I wish I had, id hear great with HAs with that much residual hearing. Ill have to wait for stem cells to improve my hearing to where their hearing currently is.</p>Hopefully CI technology gets to the point in 3-5 years where there's at least 90% chance ill hear better than with HAs. I am not comfortable with today's 70-75% odds. My friend says AB is working on 32 channels. We have seen 22 channel CIs for around 20 years now, about time for more channels! Ill be alot more interested if one of those CI companies can come out with 32 or more channels! This is very important for pitch perception but helps improve quality and even quantity of sounds!<p></p><p>There's alot of conditions that need to be met regarding CI.</p><p>1. I would like to hear better than 30db in the lows(125-500Hz) better than 40db in the mids(500-2000Hz) and better than 50db in the highs(2000-6000Hz+) <strong>and </strong>I would like to hear equal or better than my HAs at <strong>every</strong> frequency, even 125Hz and 250Hz! Today's CI technology stands a good chance of meeting my conditions in the mids and highs but a poor chance of just matching what I can hear with HAs in the lows. Maybe tomorrow's CI technology can at least match what I hear with HAs in the lows?</p><p>2. I would like to hear 100Hz or better all the way up to 6000Hz or better. For this, ill need a long electrode array inserted deep towards the apex of the cochlea. The low frequencies are the most important since most of the sounds and speech comes from the lows. I am simply curious what the highs sound like but regardless, getting to 6000Hz and better than 50db sounds realistic. The highs aren't of much importance from what my hearing friends say.</p><p>3. I want a 40% improvement in speech scores on a HINT-Q test or some other standard test. If I score 30% with my HAs, id like to reach at least 70% with CI. If I can score 40% or better with HAs, I will leave well enough alone even if I am a "borderline" candidate due to very loose CI criteria.</p><p>4. Id like to hear aided with CI comparable to what a severely deaf person hears aided with HAs and comparable to what a mildly HOH person hears unaided. Id of course like to hear better than what I and other profoundly deaf hear with the best HAs set to maximum gains.</p><p>5. I will need to be approved and financed by insurance, I can't afford the $50,000+ cost myself and even if I could, id be saving that for stuff such as a house, life saving surgery, retirement and even stem cells.</p><p>6. Id need to know what kind of risk id be taking by undergoing CI surgery. Id also need to know what complications can occur and the percent odds of them happening to me.</p><p>7. Id need to find an expert CI surgeon, team and audiologist to ensure the best possible CI results and to hopefully hear better than what I hear with HAs. Id want to talk in person to others who got CI and determine objectively how well they hear. Ill tell them to turn around and ill say sentences and see if they hear/understand. Ill also play tones and see if they can hear them further than I can. </p><p>8. Id be interested in the surgeon who has set records with CI, like he did with this lady who hears from -5 to 10db with her CI! He must have done everything right for her to get a record breaking result!</p><p>9. The audiologist will need to know how to correctly program/map my CI. He/she will need to work with me and let me see all the numbers/results entered. I will want to learn much about mapping a CI so I can help the audiologist map my own CI. I want the best possible thresholds and large dynamic ranges. 80% of a CI is the mapping and there's thousands of ways to map a CI, it's way more complicated than HAs.</p><p>10. I will need to learn more about CIs, what factors give good/bad results and see all the <strong>numbers/audiograms </strong>so I can compare and learn what results I can expect for myself. Those of you blogging your CI experience, please include all information/facts. Your subjective experience only tells half the story. How much residual hearing did you have before CI? Why were you not getting enough benefit from HAs? Did you try the best HAs with maximum gains? How well were you aided in the soundfield and what was your speech scores? How well do you hear with CI and how much, if any residual hearing did you keep per your new audiogram?</p><p>11. Stem cells is the wildcard. A CI will damage my hearing and cochlea and make it harder to get good results with stem cells in the far future. It would suck to be left out of stem cells for a long time in the implanted ear. I know the saying "the time is to hear now" but what if it means you end up not hearing in the future? I expect CI to be obsolete and no longer made/supported once stem cells takes off.</p><p>12. I will be paying close attention to the progress of stem cells all along the way. Ive seen a website in China that claims they can treat a variety of conditions including deafness today! What if in 3-5 years thousands of people travel overseas to become less deaf or HOH with stem cells and hear way better than CI with their HAs using their much improved residual hearing? Ive been thinking I could risk one ear with stem cells and if this doesn't work out then ill get a CI in that ear and wait for stem cell technology to mature. Then ill get stem cells in my non implanted ear while waiting for stem cells to make it possible to repair the damage CI does and improve my hearing enough in the CI ear too.</p><p>13. I am particularly curious why CI candidacy criteria is so loose and why they are/have implanted those with only a moderate hearing loss(such as 50db at 250Hz) a such person would still hear some sounds <strong>unaided</strong> that would be destroyed with a CI. I have a 70db loss at 250Hz and even I am worried about losing this residual hearing and hearing worse in the low frequencies. Why would someone who with the right HAs can hear 0-10db aided in several frequencies want to hear only 25-40db with CI? If they are that interested in hearing the highs, surely transposition would work?</p><p>14. I will try every powerful HA out there, especially the ones with transposition. I will do my best to make HAs work since CI is a last resort. My audiologist agrees that too many people buy into the CI hype and are too quick to give up on HAs that could be benefitting them! I know someone who scored 20% speech which improved to 70% when he tried different HAs! The longer you stick to HAs, the better CI technology will be when you finally get CI and if you can wait long enough, you can get stem cells!</p><p>That's all for now. I will keep blogging as I learn more. Feel free to comment and ill respond.</p><br /><br />update(Nov 22) I spoke too soon about thinking about CI in 3-5 years. Stem cell technology has advanced faster than I previously thought and ill be getting my chance to get stem cells in less than 3-5 years. The experts predicting a 20+ timeframe for stem cells were wrong. I now see that stem cells for deafness has recently become available, making CI a moot point now and especially in 3-5 years. Hypothetically, if stem cell technology never existed then yea id get CI when CI technology improved some more. But now CI is old news and will quickly fade away.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com5tag:blogger.com,1999:blog-7613875314868339925.post-85067247800391036892009-07-24T21:37:00.006-04:002009-07-25T01:39:00.862-04:00Getting some facts straight regarding audiograms, hearing loss, HAs and CI.Someone said to me: I learned something at JTC I thought I would share with you.<br /><br />(you showed me the image)<br /><br />Do you see that triangle at the top of the audiogram? You hearing aids should be programmed inside that triangle for speech perception. If they aren't able to reach that high, they need to be, at least, shaped like the triangle. Low frequency sounds like "ahh" and "b" are much louder when produced than sounds like "th" and "f", so they need to be amplifed LESS than the high frequency sounds. If they are louder, they will overpower even more. Your audiogram should ALWAYS slope UP, even if that means that you need to amplify the lows less.<br /><br />Also, the line at the bottom represents the WORST your hearing can be and still be aided into the speech banana.<br /><br />Caution: This is only true if you are seeking the ability to understand speech through audition.<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT45HG37ZuXdioj7c5dRa3OZVHdToK32oGAyvUQbdNo7NNbGAJ35DjOdhUsv6qLxMov2XhGizQKd0EE77CCtvSl4kR1gEA10tbp0D4plmwA7dyrvOsEDeU3k5OW0iCZLUlY8ChieUt_eI/s1600-h/audiogrammaxhl.jpg"><img style="cursor:pointer; cursor:hand;width: 324px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT45HG37ZuXdioj7c5dRa3OZVHdToK32oGAyvUQbdNo7NNbGAJ35DjOdhUsv6qLxMov2XhGizQKd0EE77CCtvSl4kR1gEA10tbp0D4plmwA7dyrvOsEDeU3k5OW0iCZLUlY8ChieUt_eI/s400/audiogrammaxhl.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5362208476270858546" /></a><br /><br />It's impossible to get to the triangle(25db HL) in the high frequencies. For that ill need the transposition cutoff to be closer to 500Hz than 1500Hz. Maybe Phonak will design a new HA where the transposition has more programmable options. With a 1500Hz cutoff, I pretty much don't benefit from transposition since I have 120db loss at that frequency.<br /><br />When my HAs were reprogrammed, different aided results were tried and with the gain on the lows reduced, I heard less. My parents said I begin to talk too loud and they had to shout at me so I could hear them. My ability to understand speech dropped as well. I also was missing out on some environmental sounds with less gains. So yea it's always good to give as much gain as possible, why hear less?<br /><br />As for the bottom line(black dots) that's not true! Look at the 750Hz, 1000Hz and 1500Hz results. It's a matter of getting the most powerful HA and correctly programming it for the best possible aided hearing. I am sad when I see people with better unaided hearing than me hear worse than me aided. They need better HAs and more amplification!<br /><br />------------------------------------------------------<br /><br /><p>Levels of Hearing Loss. What's the difference?</p><p>(note: I had to correct some of the grammar. Whoever wrote the guide below needs to go back to school)<br /></p><br /><br />Mild Hearing Loss(25-40db unaided, 0-10db aided)- a child with mild hearing loss usually has normal speech, but will have trouble in the school setting because it will be difficult to hear speech from more than 12ft away or when there is background noise. This is because much of the meaning in English is contained in the voiceless consonants which are high-pitched and soft. They are s, sh, t, p, k ,f, ch, and th.<br />A child with a mild loss in both ears will need some amplification in each ear to hear clearly at school , in groups, or at a distance.<br /><br /><strong>My comments: </strong>Makes sense. People who get a CI on average end up hearing 25-40db aided. So I want to make it clear that a CI does not cure your deafness nor does it give you normal hearing in the large majority of cases. You will hear equal in quantity to someone with a mild hearing loss after CI. Someone with a mild unaided loss should be aided to 0-10db with HAs. Low power, open fit HAs can do the job in this case and will give you normal aided hearing.<br /><br /><p>Moderate Hearing Loss(40-70db unaided, 0-10db aided)- a child with a moderate hearing loss can clearly hear speech only when the speaker is very close-less than two feet away. They need hearing aids to hear the softest sounds and to acquire understandable speech. If they receive hearing aids before four years of age, they usually progress rapidly in learning to talk.</p><p><strong>My comments: </strong>Powerful HAs can aid a moderate hearing loss to 0db and no worse than 10db. I have a 55db loss at 125Hz and am aided to 0db. At 250Hz, my loss is 70db and im aided to 5db. There's still enough residual hearing to hear normally and even get to 0db.<br /></p><br /><p>Severe Hearing Loss(70-90db unaided, 10-30db aided)- Children with a severe hearing loss do not perceive speech no matter how close they are to the speaker. They will not learn to talk clearly and be understood without hearing aids or cochlear implants (70db or worse across the audiogram should consider a cochlear implant). All children with a severe hearing losses require special help because they receive only a portion of the clues usually available in speech sounds. With hearing aids they can detect vowel sounds,pitch,some consonants, and stress clues from speech. With their eyes they can learn to detect about 25 consonants sounds. With lipreading and listening together, they may receive about half of the clues that normal hearing people use to understand speech.</p><p><strong>My comments: </strong>While severely deaf people experience a silent world unaided, they can be aided to normal or near normal with powerful HAs. A CI is not a wise option when powerful HAs can aid a severe loss similar to what a CI can aid. I have friends with a severe hearing loss and with the right HAs, they hear/understand speech(including S and F) as good as a CI. <br /></p><br />Profound Hearing Loss(90db+ unaided, 30db+ aided)-<br /><p>Children with a profound hearing loss receive even less auditory information. If the child is under one year of age, they are too young to get a cochlear implant. In most states, the child needs to be at 9-12 months old. Hearing aids are not going to give much to a child with a profound hearing loss. Example: A child wearing hearing aids with a profound hearing loss will hear the sentence "Go get your shoes" as "oh eh yoo ooh" If you have dreams of your child talking and speech sounding very clear, then hearing aids are not an option for a child with a profound hearing loss. Remember 70 db or worse across the audiogram. Match the technology with the hearing loss. No Hearing aid in the world will help a profound individual like a Cochlear Implant will. </p><p><strong>My comments: </strong>This is only half true. I was born profoundly deaf for the most part and my old audiograms show a 100db HL at 1000Hz and higher frequencies. I was still severely deaf in the low frequencies with a 70db HL at 250Hz. I had to make do with analog HAs as well. Someone today would hear much better with powerful digital HAs. </p><p>They can still get decent benefit depending how profound their loss is. I was able to talk/speak clearly and hear/understand some speech as a child. I had much worse than 70db in the mid/high frequencies, try 100db! Not only that, I did great with old analog HA technology. Today's HAs can give good aided results for hearing loss as profound as 110db and have fitting ranges as high as 120db HL!</p><p>There's no guarantee if you have residual hearing that youll hear better with a CI, especially if you have plenty of residual hearing. CIs are great technology but should be considered a last resort after you have tried all the best HAs programmed with maximum gains. As for understanding speech, most deaf people are great lip readers and combined with sound awareness, they can score around 90%. Many of them also use sign language as a means of communication. There is a $50,000 cost(sometimes paid for by insurance) for CI as well as many risks including surgery itself.</p><p>I am not against CI but realise there is way too much hype surrounding this technology. Ive read many CI blogs and alot of people have unrealistic expectations. They claim that they will(as in 100% chance) that they will hear perfect or at least much better than with HAs. I hate to say this but there are no guarantees with CI or any other technology. The more residual hearing you have, the more you will benefit from HAs. I get great benefits from HAs(at least in the low frequencies) and if you have equal or greater residual hearing than me, you will hear more/better/louder with the right HAs than I can. Go visit your audiologist and get your HAs reprogrammed like I did, you will thank him and hear much better.</p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com5tag:blogger.com,1999:blog-7613875314868339925.post-42841492009409748392009-07-24T02:33:00.006-04:002009-07-24T07:53:51.002-04:00Move over cyborg queen! The Ambling Rambler sets new CI record at -5db!<p>Move over Deanna Bono the Cyborg Queen with her record 10db! Robyn Carter, the Ambling Rambler sets new CI record at -5db! I nearly fell out of my chair when I saw her audiogram! Thanks DeafLissa90 for the link to her audiogram and blog!<br /><br />Check with <a href="http://www.guinnessworldrecords.com/register/login.aspx">Guinness world records</a>, you could be famous! <br /><br /><a href="http://robyncarter.blogspot.com/">Her amazing CI score!</a> Great blog, thanks for sharing your story! She lost all her hearing years ago so no residual hearing was sacrified.<br /><br />She included her audiogram. I extrapolated/estimated additional frequencies to show the full range of 11 audiometric frequencies.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0STVuiAfvERaq9Q98hjlLa_guhL9LNFhato5CP2pB1uX1z-_kUXzt-GiPo4CgMA9IfUGyJgMm66FGdJnP5zc2-dm8sMTWOhjgqKhH4evtNZzfEjmRa4ly_m163BbWZ59ns09KPv9IRYU/s1600-h/recordminus5dbCI.bmp"><img style="cursor:pointer; cursor:hand;width: 300px; height: 232px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0STVuiAfvERaq9Q98hjlLa_guhL9LNFhato5CP2pB1uX1z-_kUXzt-GiPo4CgMA9IfUGyJgMm66FGdJnP5zc2-dm8sMTWOhjgqKhH4evtNZzfEjmRa4ly_m163BbWZ59ns09KPv9IRYU/s400/recordminus5dbCI.bmp" border="0" alt="" id="BLOGGER_PHOTO_ID_5361974466962775330" /></a><br /><br />I have devised a foruma to calculate hearing. Ill explain it fully in another post. <br /><br />125Hz=0db HL<br />250Hz=5db HL<br />500Hz=0db HL<br />750Hz=5db HL<br />1000Hz=10db HL<br />1500Hz=0db HL<br />2000Hz=-5db HL<br />3000Hz=5db HL<br />4000Hz=10db HL<br />6000Hz=10db HL<br />8000Hz=0db HL<br /><br />LFA=5/3=2(2x0.6=1) *normal*<br />MFA=10/5=2(2x0.3=1) *normal*<br />HFA=20/5=4(4x0.1=0) *normal*<br />OFA=40/11=4 *normal*<br />WFA=1+1+0=2 *normal*<br /><br />Her current aided audiogram with CI. I rounded the db numbers to the nearest whole number. According to my math, she hears normally across the board! In fact she hears better than most hearing people, at least as far as quantity and thresholds goes! That is one amazing CI result you got there. Nothing worse than 10db and several with scores of at least 0db! Your record will probably last a very, very long time!<br /><p>Furthermore, I was told that 10db was the best possible CI score and that 0db was impossible with CI and for the matter, with HA. I will need an official HA test to confirm the 0db aided score at 125Hz. However at that frequency, I hear better than hearing people. I don't have enough residual hearing to achieve 0db at above 250Hz. However I am interested in those with only a mild/moderate HL getting their HAs programmed for gains equal to their HL and ending up with 0db aided. Don't you want to hear great at 0db?</p><p>I would be very interested to see how it was possible for her to achieve this record breaking CI results. Her audiologists and surgeon(s) should investigate and discover the factors contributing to such a steller result. They then can learn and share the knowlege with others and help improve CI technology. This will allow more people to end up hearing better with CI over what the best HAs with maximum gains could offer. It would also decrease the number of people who hear worse after CI, especially the borderline candidates with plenty of residual hearing and who should benefit great from HAs.</p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com0tag:blogger.com,1999:blog-7613875314868339925.post-65723972791817329882009-07-07T14:18:00.008-04:002009-08-07T11:55:35.772-04:00More information on stem cells to treat/cure deafness and diseases.<a href="http://wwwmsviewsandrelatednews.blogspot.com/2009/06/ms-patients-diary-of-his-stem-cell.html">source1</a><br /><br />The difference between he and I is that a symptom of his MS involved the loss of hearing. His hearing improved dramatically after the first treatment. Richard returned because scientists there believed they discovered the stem cell responsible for inner ear hair growth. His return involved the hope that his hearing would be improved even more.<br /><br /><a href="http://startelegram.typepad.com/my_fight_with_ms/2009/02/index.html">source2</a><br /><br />This was repeated again intrathecally and then an extra 3 million CD 34+ & CD133+ concentrate for inner ear nerve hair growth.<br /><br />7. Risks are very minimal. The very small percentage of patients that have issues are nerve bruising at the spinal cord site but goes away in about 24 hours. Preston had this but I did not that. There are no side effects, how can there be? We as humans are composed of stem cells and if they body rejects it, it is simply eliminated out of the body. PERIOD! It is not a drug. Some have side effects from every single medicine but not with stem cells.<br /><br />On Feb. 15-28th I return to Costa Rica for another treatment. ICM will be trying two new experimental treatments. One includes using the stem cell CD 133+ that was proven in Israel last Dec. to improve inner ear nerve hair growth. Since MS robbed my hearing we will now try a concentration of this stem cell to see what it can do. It was included in our original stem cell treatment and I have had to have my hearing aids turned down 4x.<br /><br /><a href="http://www.rnid.org.uk/community/forums/tinnitus/cure_is_on_the_horizon_/?pn=1">source3</a><br /><br />recently ive been reading so much about the future and the future of technology.....man, as someone once said before on this board, there really hasnt ever been such a good time to have tinnitus! all the research and funding going into tinnitus and deafness is higher than ever before, and we're constantly getting news of stem cell/gene therapy research into these areas - the scientists are ON it!!<br /><br />I know how awful tinnitus etc is, but guys, we're making so much progress at such an increasing rate...there WILL be a cure for all these aural conditions soon enough! im no futurologist or anything but from what ive read about the exponential progress of technology in the futur...man, its SURELY relasitically just a matter of years away!!<br /><br />I mentioned stem cells/gene therapy as personally i'm concerned mostly by hearing loss, which either stem cells or gene therapy will cure, within a decade (i base this on the research i've done thus far). i agree that the cure for tinnitus may not be based in one of these approaches, but that doesn't mean it won't be cured very soon. Diseases are most definitely on their way out...<br /><br /><a href="http://positiveterminal.blogspot.com/2009/07/cochlea-hair-cell-regeneration.html">source4</a><br /><br />Dennis finally got time to post the answers regarding treatment for the deaf. Id be interested in seeing what the doctors and experts say about anecdotal reports of people who are having their deafness(sometimes in conjuction with other conditions/diseases) treated/cured now!<br /><br />Ive seen anecdotal reports of deafness being treated/cured several times since 2007. If this is really true then we can expect human clinical trials by 2015-2020. Perhaps it's too risky and expermental to be done on healthy humans today but it may still be done on humans that have serious diseases such as MS. They can treat both the MS and deafness together with taking the risk only once. When they establish more safety, that's when we will see deaf clinical trials.<br /><br />We will probably see such clinical trials in other countries first then later on in America. I will keep searching the net and get more news. Some experts are now forecasting 2015-2020 for human clinical trials to restore some hearing loss. If the anecdotes are any indication, we won't have to wait as long as feared. There still is no date yet on when human clinical trials will begin but once we have a date, itll be around the corner.<br /><br />I applaud the brave souls who will risk their hearing, health and even lives being the first clinical trial subjects. Ive read that demand will be fierce with thousands applying to get into the first trials. I am not a risk taker so ill bow out and eagerly await the results of pioneers. When a high degree of safety is proven, ill try to join the later trials(phase II or III)<br /><br />Update: I read more and found out that having *too* many hair cells actually results in a hearing loss as bad as having too few! Too many also increases the risk that some hair cells could become cancer! So yes just like CI, those with too much residual hearing may in fact hear worse after stem cell treatments!<br /><br />However I also read that methods for halting the growth of hair cells is being developed to minimize this problem of ending up with excess hair cells. Even if you do end up with a few too many, it should be possible to kill off the extras with loud noise. It remains to be seen how much of a hearing loss is required to be a candidate, however I see no reason the severely and profoundly deaf won't make good candidates.<br /><br />Good Wikipedia on <a href="http://en.wikipedia.org/wiki/Cochlear_implant">Cochlear implants</a><br /><br /><p>People were getting CI before FDA approval and even before clinical trials. Even if it takes around 30 years to see clinical trials for stem cells to treat/improve deafness, there will be thousands of people who seek that treatment well before the first clinical trials. We are already seeing a few dozen people getting stem cells for their deafness, expect that number to rocket in the next few years. I will be following closely to evaluate results and safety.</p><p></p><p>Update! Another anecdote!</p><p><a href="http://groups.yahoo.com/group/PACT/message/19563">Stem cells!</a></p><p>My son has CP and severe to profound hearing loss. We went in 2007 and 2008 in<br />China for umbilical stem cells treatment. One of teh outcomes and they have been<br />many was the improvement in hearing loss. Each time I decreased teh power of teh<br />hearing aids. From their case studies they say in 6-7 treatments you recover<br />your hearing loss.<br /> <br />I also know they had several patients with no vision that after one treatment (<br />6 injections) started to see with glases. This is something you may want to look<br />into. There is a group BIA4kids on which lots of parents went to China for<br />treatment of neurological and degenerative diseases including hearing loss and<br />lack of vision.<br /><br /></p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com14tag:blogger.com,1999:blog-7613875314868339925.post-17774630046214708832009-07-01T17:55:00.004-04:002009-07-01T20:01:24.829-04:00My HAs have been reprogrammed. 5db aided at 125Hz, 98% speech score!I have talked for a few months about getting my HAs reprogrammed and finally I got them reprogrammed! One of my HAs suddenly died, but the other is going strong. The dead one will be sent in for repair/replacement. Many others have experienced this bug with their Naidias dying on them. I learned alot more about hearing loss and hearing aids when I can see all the reprogramming going on.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-d7nf5_Td-H8R5PHO8KXwO-Wqi24uqc_d9M8GtKzbKP4CSU8ZtYuJltusDmlR0fw1a4qF8Np-hyDIc0uK0qURGu1F6mwoML12zgNBIeQmwYv85oS1d496FILW-2pmqsvl1rLa1_EavbA/s1600-h/98%25speech.bmp"><img style="cursor:pointer; cursor:hand;width: 400px; height: 222px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-d7nf5_Td-H8R5PHO8KXwO-Wqi24uqc_d9M8GtKzbKP4CSU8ZtYuJltusDmlR0fw1a4qF8Np-hyDIc0uK0qURGu1F6mwoML12zgNBIeQmwYv85oS1d496FILW-2pmqsvl1rLa1_EavbA/s400/98%25speech.bmp" border="0" alt="" id="BLOGGER_PHOTO_ID_5353614800904574850" /></a><br /><br />I posted about this in a previous post. My speech comphrension has increased and my best score is a whopping 98%, higher than many with CI who took this test. I constantly score around 85% which is a 15% improvement just from boosting the lows! More gains has brought out extra loudness and makes it easier to hear!<br /><br />The funny thing is "John" and "Joan" both sounded identical before my HA was reprogrammed for more gain and before I kept training my brain. Now I can differnate the two most of the time.<br /><br />Im still stuck unable to distinguish between "has" and "had" although I hear both words. My dad says I need to listen closely for the hissing "s" sound. Can you hear that sound with either HA or CI? How do you score on the above speech test, see my earlier post for a link.<br /><br />My dad said a bunch of numbers such as "four hundred sixty six" or "six hundred fifty two" and I got it right most of the time. Fifty and sixty still give me trouble for now, gotta keep training my brain to tell the subtle differences!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdWBU4TA0kgfvI8WE96-XEvGBV85pDWVMCUUkl_VIFGS48qr_oXp4NDGBAY3TD7hUcVUMzXUgUcouqn9_ZFF6expFGooo1bS8KTHi0uUIkZ1E9JyLuwde09KuyVxdEomOvs7_rFY7xB_4/s1600-h/deafdudeaudiogram1.bmp"><img style="cursor:pointer; cursor:hand;width: 300px; height: 232px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdWBU4TA0kgfvI8WE96-XEvGBV85pDWVMCUUkl_VIFGS48qr_oXp4NDGBAY3TD7hUcVUMzXUgUcouqn9_ZFF6expFGooo1bS8KTHi0uUIkZ1E9JyLuwde09KuyVxdEomOvs7_rFY7xB_4/s400/deafdudeaudiogram1.bmp" border="0" alt="" id="BLOGGER_PHOTO_ID_5353614476575053426" /></a><br /><br />Red dots: My unaided hearing for both ears.<br />Blue dots: My aided hearing for both ears.<br /><br />The difference is amazing! Reprogramming my HAs for more gains has gotten my low frequency aided thresholds down to normal hearing, quantity(but not quality) wise. I hear (low frequency) sounds that my mom, dad and brother don't hear! When there was a thunderstorm, I could hear the pattering of every drop of rain on the roof! I heard thunder before my mom and dad did! It was a loud, rumbling sound!<br /><br />I am still learning what makes some people with similar audiograms get more benefit from HAs than others. My audiologist says it has to do with training your brain and he says I need to keep training my brain or I won't properly understand speech.<br /><br />If everyone is different, why can't others train their brain to understand speech(provided they still have a measurable amount of residual hearing, such as similar to mine) I do know you still need to train the brain with CI to improve speech. Hopefully you can train your brain in your HA ear to hear lots of environmental sounds and a good deal of speech. Can your HA be reprogrammed for more gains? It's made a big difference for me in my experience. Ill be sharing it in my blog.<br /><br />Right now, it's mostly the S and F that I can't differnate although I hear both of them, they sound the same! However if someone says "snake" and "snakes" I can tell there's an extra S. But between "fun" and "sun" they are so similar. So yea even with me hearing mostly low frequencies(nothing much above 1000Hz) I still am able to convey a high percentage of speech information. I read that frequencies of 2000Hz and up only account for 10% of speech.<br /><br />I will post more as I learn and get fine tuned programming on my HAsdeafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com12tag:blogger.com,1999:blog-7613875314868339925.post-42670132202898127352009-06-20T03:32:00.004-04:002009-06-30T07:46:42.419-04:00Some answers thus far about stem cells for the deaf!<p>My friend <a href="http://positiveterminal.blogspot.com/2009/06/hlaa-day-1.html">Dennis</a> went to the HLAA and he was kind enough to provide some answers while chatting with me. He was too tired and busy to post the answers right now but will do so in the next few days. I am posting what answers he gave me so far.</p><p>He says the 3 doctors don't know for sure on the timeframe but they say 25-50 years just to shut people up who keep nagging the docs and to please those people who secretly hope that stem cells for the deaf does not happen "soon" or even in their lives. I talked to another friend who agrees with me that culturally Deaf people fear that any treatment/cure would destroy their culture so they are hoping everyone stays deaf as long as they live.</p><p>The docs did say that testing is currently done on mice and chickens and will move on to monkeys. They said: monkeys are next within the next 5-10 years<br />human trials take a minimum of 7-15 years. So yea most of us will be alive when the time comes. We will learn alot more before 2020 when trials begin on monkeys. Right now enough is known that deafness can be treated someday.</p><p>It's too early to know how many DB improvement, the doctors couldn't even answer that one. However it's known that chickens which can regenerate their own hair cells still end up mildly HOH(25-40db HL) after they are deafened with ototoxic drugs. The new hair cells which were regenerated by chickens are of lesser quality and fewer in quantity than original hair cells. I personally am going to realistically expect a 20db improvement. It will take a very long time before technology can restore profoundly deaf people to normal hearing(maximum 25db HL) but a partial restoration alone is great, youll be able to benefit from HAs again or benefit much more.</p><p>There's actually 3 different methods currently being researched. One is "implantation" of stem cells, two is "turn off the stop growing triggers" the third is to try to get support cells to turn into hair cells when hair cells die off. Ill find out more on the other methods soon. It's possible one or more of those methods could be used in humans before stem cells.<br /></p><p>I would give it at least 10 years before one or more methods to restore some hearing to the deaf is ready for human clinical trials. In the meantime, there's powerful HAs out there and for those with no residual hearing, there's CI. You can read my previous posts to learn more about HAs and CI.</p><p></p><p>*update!* HLAA links with PDF<a href="http://hlaa.omnibooksonline.com/"> answers! </a></p><p>Friday, June 19, 2009<br />9 a.m. - Noon: Research Symposium, An Update On the Latest Hair Cell Regeneration Research<br /><br />Cochlear Regeneration: A treatment for severe hearing loss in our lifetime?<br /><br />George Gates, M.D.<br /><br />Hair Cell Regeneration-Where Are We & How Did We Get Here?<br /><br />Douglas Cotanche, Ph.D.<br /><br />Can We Regenerate the Mammalian Audtory System?<br /><br />Neil Segil, Ph.D.<br /><br />Vestibular System Reconstruction<br /><br />Hinrich Staecker, M.D., Ph.D.<br /><br /></p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com32tag:blogger.com,1999:blog-7613875314868339925.post-12041362500616595092009-06-16T05:39:00.003-04:002009-06-16T05:52:19.876-04:00I got 75% correct for online sentence matrix hearing test!<a href="http://www.medel.com/US/Rehabilitation/adults.php">Take the online sentence matrix test!</a><br /><br />65db loudness as measured with SPL meter<br />male voice<br />normal speed<br />no noise<br />25 sentences<br /><br />Scored 72%. First time I got a 63% with 10 sentences. Score about 5% less with female voice. Score around 40% with some noise and 25%(chance) with lots of noise. Is this considered a fairly decent score? What did you score and under what settings? Do any of you have a link to other online speech tests?<br /><br />I tried again, same settings but 10 sentences. No repeats and got 73%<p></p><p>***The above results were from March. I took it again in June and scored 75% consistently with male voice, normal speed, 10 sentences, repeats allowed***</p><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3wYbuwRfjSi_g-iREWYjRnyImUs6UJw4Ikf4r2f00GoPSrFyYi4fTna8-fspOIe65ic0jpWobLyDlBhIIeOBudUll8pCGXw8c5ek270tkNbtCyAgTs4iulovynCgREWH8fXjUvDQ-3Vg/s1600-h/75percentspeech.bmp"><img style="cursor:pointer; cursor:hand;width: 400px; height: 224px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3wYbuwRfjSi_g-iREWYjRnyImUs6UJw4Ikf4r2f00GoPSrFyYi4fTna8-fspOIe65ic0jpWobLyDlBhIIeOBudUll8pCGXw8c5ek270tkNbtCyAgTs4iulovynCgREWH8fXjUvDQ-3Vg/s400/75percentspeech.bmp" border="0" alt="" id="BLOGGER_PHOTO_ID_5347860722232993922" /></a><br /><p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com2tag:blogger.com,1999:blog-7613875314868339925.post-60120421141222645912009-06-14T04:05:00.002-04:002009-06-14T05:16:30.859-04:00Good questions one should ask about stem cells for the deaf.<p>Someone and perhaps others are going to the <a href="http://www.drf.org/event+details/2009/06/19?event_id=39">HLAA</a> where the topic is “An Update on the Latest Hair Cell Regeneration Research." </p><p>I have several questions id like to forward to the experts. I live out of state and therefore can't afford the long trip, but those attending could forward my questions as well as come with their own. The questions will of course be about stem cells and any other methods that can treat deafness and restore some unaided hearing.</p><p>1. Alot of us are very curious on any educated estimates on when stem cells will begin human clinical trials. Reading around puts the estimate at around 10 years from now or near 2020. What about trials on larger animals than mice, such as rabbits, cats, dogs, apes, etc? As for human clinical trials, how does one get in and do they pay full costs or get a discount for contributing/participating in valuable research?</p><p>2. Another thing of particular interest is the extent of improvement one can realistically expect. What would be the requirements of candidacy and how will the degree of hearing loss affect the degree of improvement? To what hearing level is realistic, how much of a hearing loss will one have afterwards? How many DB improvement is expected and will the improvement start first in the low frequencies? 90% of audiograms are sloping with the best hearing in the lows. Can the procedure simply be repeated to achieve additional improvement or is it a one chance deal where you are stuck(at least for a while) with whatever you get?</p><p>3. What are the estimated costs, how much cheaper will it be than CI? How will insurance factor in? Will it be affordable for the middle class or just the rich?</p><p>4. What risks are expected? Do the risks extend beyond the ear and hearing? Is it expected to be safer than CI? Is all existing residual hearing preserved with stem cells, meaning there's no "two steps ahead, one step back" problem?</p><p>5. What will happen to those who have a CI(or two) how much will this complicate stem cells and how will it affect the results? I have concerns about this and it's one reason I am saving both ears as I want the best possible results by keeping my ears intact and preserving all residual hearing. Some of us are also concerned that support for CI will rapidly become nonexistant once people start getting stem cells. Will CI become obsolete shortly afterwards?</p><p>If I have more questions, I will ask them here. Id like to know where I can find CC(close captions) videos of this upcomming seminar as well as review previous seminars? </p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com2tag:blogger.com,1999:blog-7613875314868339925.post-53551149152334829822009-06-09T00:33:00.002-04:002009-06-09T02:51:21.267-04:00Deaf treatment by stem cells likley to begin human clinical trials in 2015-2020<p>I talked to someone who has some knowlege on this. He said to expect human clinical trials in 2015-2020 timeframe. Give it another 5 years after that for FDA approval. He says it's a question of when, not if. I read articles that state clinical trials for stem cells to treat some forms of blindness will begin in 2011. So it's logical to believe that we will see such clinical trials for deafness a few years after. Certainly not 50-100 years like some Deaf people would like to believe.</p><p>I also asked him about the fate of CIs and he says CIs will be obsolete when the real thing becomes available. Itll be a third the $50k cost of CI, safer, better, natural and very popular. Most hearing parents of deaf babies will give them stem cells to improve their hearing. The CI companies will either go out of business or start offering stem cell treatments.</p><p>I then asked him what about all those with CIs, he says they will still be able to get stem cells and won't need their CI anymore. I asked him wouldn't results be better on virgin ears that still have residual hearing? He doesn't know that one. However from sources I read, they believe it's better to save your ears for stem cells. Itll be easier to improve hearing when you have existing residual hearing than to start from scratch with none.</p><p>He says it's too early to determine what role insurance will have in this. Im guessing insurance will pay for those who are deaf while those who are HOH will need to save up. If insurance considers stem cells for deafness an elective procedure, I will pay out of pocket and dad will help me afford it. I was raised 100% oral and my parents would love to help me hear better. They have been training my ability to understand sounds and speech since I was a baby.</p><p>We both know that HAs, CI and stem cells are an individual choice. I will respect other's choice in return that they respect my choice to hear better with stem cells. He did tell me and I fully understand that deaf treatment will be controveral just like CIs once were but are almost fully accepted today except when forced on babies. He says culturally Deaf fear that stem cells will eradicate their way of life. Well, they don't have to seek a treatment for their own deafness. Im sure there will be some born deaf or late deafened who choose to be that way and join the <a href="http://en.wikipedia.org/wiki/Deaf_culture">Deaf culture. </a></p><p>For those of us who choose stem cell treatment, I am going to be realistic by asking for a 20db improvement. When that techology starts out, expect a partial improvement. Perhaps in another 10 years the technology will be mature enough to get many people to normal hearing, as defined of 25db or better. No one yet knows the extent of improvement and we may not know till human clinical trials begin. But don't expect normal hearing for a while. Even when it was done on animals, they were still hard of hearing but no longer profoundly deaf.</p><p>Those who were born profoundly deaf and never heard a sound in their lives will definately not be interested. I know a blind person who was born that way and that person does not wish to be cured or to ever see. That person does not miss what was never seen. I never heard much in the way of high frequencies and probably never heard above 3000Hz. What little high frequency hearing I had when I was younger is gone, today I don't hear much above 1000Hz. I have made a post about high frequencies not being very important.</p><p>I talked to another one of my friends and he agrees with me. He says the highs(2000Hz and up) are annoying and sound like a shrill squeaky sound that gets squeakier as the pitch increases. It has an "eeeee" sound quality. My dad says anything above 2000Hz is just useless noise. It makes me wonder why some are so obsessed/desperate to hear the highs. One of my friends with a CI who now hears the highs says I really am not missing out on much.</p><p>With that said, id much rather hear unaided and improve the lows but ill be fine with satisfying my curiousity on what high frequencies *really* sound if I happen to get some ability to hear highs after stem cells. I hear unaided at 65db HL at 250Hz so perhaps ill be down to 45-50db at that frequency. I wonder how much people with this moderate HL hear unaided.</p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com37tag:blogger.com,1999:blog-7613875314868339925.post-55683633641752990792009-05-25T11:41:00.006-04:002009-06-18T00:47:42.822-04:00Take the piano thud test! How high can you hear?<a href="http://www.music.vt.edu/musicdictionary/appendix/pitch/pitch.html">Take the test!</a><br /><br />The above is a great test. Test it with your best HAs(left, right, both) with the volume dial or button turned to the max. It should work for those with CI as well, but you won't get to test for cochlear dead zones as it's a moot point. Your CI just bypasses the dead zones and stimulates the auditory nerve directly with electrical pulses. You can test if you can hear the high frequencies with CI. For those with HA, you need enough surviving hair cells to amplify. For those of you who are hearing or have a mild hearing loss, you can test unaided. For those of us who are deaf, we can't hear enough unaided to get a proper assessment of our cochlear dead regions. <br /><br />Unaided, I can't properly hear anything but the lows. It's not loud enough even with the speaker cranked to the max. You will want to use a desktop speaker and turn it up to the max. If the speaker distorts terribly, turn it down a couple notches, but make sure it's loud enough for your HA to pick up the sound!<br /><br />Try it with the speaker 3 feet away then hold the speaker near your HA. For me, the results were the same since my speaker is loud enough to reach my HA's SPL limit either way. Experment in different ways and obtain your best results. Make sure you properly adjust your speaker and try to test in a quiet room, turn off any other sources of noise.<br /><br />This will both test what your HAs are capable of as well as your ears. It's also great for testing cochlear dead regions. The tone should be loud and clear like a bell and last the full 4 seconds. The pitch should ascend logically with each key(both white and black) sounding different. If you get the following, suspect a cochlear dead region(and possibly a poorly programmed HA)<br /><br />1. The tone does not last the full 4 seconds, it fades away faster.<br />2. The tone is very faint or you just hear a thud or nothing.<br />3. The pitch sounds off or wrong or is the same across keys.<br />4. The tone sounds garbled, distorted or noiselike and not musical.<br /><br />The highest I could hear at all for left ear: 967Hz then I hear just a thud.<br />The highest I could hear at all for right ear: 1046Hz then I hear just a thud.<br /><br />The highest I could hear for both HA: <br />932Hz for the full 4 sec. At 967Hz it was heard for 3 sec. At 1046Hz it was heard for 2 sec. At 1108Hz and 1174Hz I heard it for just a second then silence. Above 1174Hz, I heard just a thud sound. I hear somewhat better with both HAs than with each alone.<br /><p>I find it odd that I hear up to 932Hz loud and clear but it goes downhill fast from there. Below 932Hz sounds just a bit louder with each descending key. The volume drops off rapidly with each ascending key above 932Hz. Perhaps I don't have enough surviving hair cells at around 1000Hz and none a few dozen Hz above that. Ive always wondered how much of a HL before you get to that point. Perhaps no HA is powerful enough above 110-115db HL.</p><p>I will repost my audiogram:<br /><br />125Hz: 60-65db HL<br />250Hz: 70-75db HL<br />375Hz: 80db HL(home test)<br />500Hz: 90db HL<br />625Hz: 100db HL(home test)<br />750Hz: 105-110db HL<br />875Hz: 110db HL(home test)<br />1000Hz: 110-115db HL<br />above 1000Hz: 115db-120db+ HL, possible cochlear dead region.<br /><br />I will learn more about this from reading around and from your results and explanations. Feel free to leave a comment with your own results and ask questions.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com13tag:blogger.com,1999:blog-7613875314868339925.post-13222127359981715602009-05-19T08:31:00.003-04:002009-05-19T09:17:24.896-04:00I had brief tinnitus a moment ago, it sounded like brrrrrr!I don't have a problem with tinnitus but do experience it briefly once in a while. Most of the time, the world is silent without HAs. I wasn't wearing HAs when this tinnitus occured. It lasted for about 10 seconds and was heard louder in my left ear(which is the very slightly worse ear) The sound was like two tones, a 750Hz and a 125Hz tone. Ive read that sudden tinnitus or any changes in tinnitus usually means you have lost more hearing. Ive very gradually been losing my mid frequencies. Ill have to scan all my audiograms and post them but ive posted some of my audiograms so far. When my HAs are reprogrammed hopefully next week, ill find out more.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com3tag:blogger.com,1999:blog-7613875314868339925.post-33756453230097386552009-05-15T07:39:00.009-04:002009-05-15T09:21:09.512-04:00So exactly how good are the best HAs? The facts and my experience.<p>I will find out more in a few days when my HAs are reprogrammed and will share my experience on that and how much better I hear. What I currently hear is shown below:</p><p>250Hz(75db HL) and 500Hz(90db HL): I hear low frequencies up to 500Hz very loud. I can still hear those from the other side of the house!<br /></p>750Hz(105db HL): I still hear this tone very loud but notice it's half as loud as the 500Hz tone. I can hear this tone from the other room!<br /><br />1000Hz(110db HL): Much softer than 750Hz, about half as loud and about a quarter as loud as 500Hz. I can still hear 1000Hz from the other end of my room!<br /><br />1250Hz(115db HL): Less than half as loud as 1000Hz, this tone is quite hard to hear even if I put my ear to the speaker. I can't hear it from more than about 3 feet away.<br /><br />1500Hz and 2000Hz+(115db-120db+ HL): Most of the time, 1500Hz is inaudible. On a good day, I hear it from a few inches away at threshold levels. <br /><br />I am personally surprised by that disparity, once I reach 110db HL, each few db above that quickly fades into nothing. But I hear sounds very loud and well at levels below 110db HL, even the 750Hz tone I can hear very well! I have a piano when when I play it, there is a small difference in loudness between the low(first set) and mid frequency keys(second set). It's when I get to the high frequency keys(third set) that I can tell a noticable volume decrease between each key. My parents do not experience this however for any keys. My dad only experiences this for the last few highest keys since he has a moderate high frequency loss. But for me, the last dozen keys are silent, and the keys before that are very faint.<br /><br />Some possibilities and theories:<br /><br />1. Perhaps the dynamics of the ear changes at 110db and up. Below 110db HL, there still is enough functioning hair cells that can be stimulated/amplified. Once you get to 110db and up, there is so few, if any hair cells. Ive read into cochlear dead regions where a very loud sound actually stimulates adjacant hair cells and this does give the person a perception of hearing. The sound may be noiselike, very distorted, off-frequency, felt as a woosh, or simply very faint.<br /><br />2. I wonder if it's a limitation of HAs but after trying my old HAs from 1998 and comparing my new HAs from 2008 with neither giving me hearing above 1250Hz, but the new HAs making sounds at 1250Hz and below 2-4x louder, yet still not being able to give me anything usable at 1500Hz, I suspect it's my ears.<br /><br />3. I am able to get a response on the audiometer at 1500Hz, 2000Hz and sometimes even 3000Hz in the 115db to 120db range. But I don't recall hearing any shrill tones or whistles. It's likley I heard a low frequency distortion that came from the audiometer and/or due to the cochlear dead region phenomenon. I also hear the same distortion comming from my speakers at 1500Hz, 2000Hz, 3000Hz, 4000Hz, etc. It sounds like "ehhhh" like humming or static.<br /><br />4. I will find out more when I ask my audie about this and when he reprograms my HAs. He did say that at 120db, HAs cease to become useful. I can ask him what about at 110db, 115db and in between 110db and 120db.<br /><br />5. I do know that the pain threshold as well as UCL(uncomfortable level) occurs at or around 120db. Thus even if you could attempt to amplify a 120db loss with an insane amount of gain/SPL, it won't be pratical as there's zero dynamic range, would not be comfortable and might even cause damage to adjacant functioning hair cells.<br /><p>---------------------------------------------------------</p><p>On another note, given the max SPL of my HAs(Phonak Naida V UP) as well as the UCL/pain threshold, the worst unaided audiogram(assuming no cochlear dead regions) someone can have and still hear anything is as follows:<p>frequency/db HL/SPL HL/HA max SPL dbA/dynamic range</p><p>125Hz: 95/120/123/3<br />250Hz: 105/121/126/5<br />500Hz: 115/127/130/3<br />750Hz: 115/125/135*/5<br />1000Hz: 115/124/140*/6<br />1500Hz: 115/125/135*/5<br />2000Hz: 115/127/130/3<br />3000Hz: 110/126/128/2<br />4000Hz: 100/116/119/3<br />6000Hz**: 85/106/110/4<br />8000Hz**: 60/86/90/4<br /><br />Above 4000Hz can't be aided with my HAs, however you can give transposition/soundrecover a try. This shifts the high frequencies down as low as 1500Hz from what I heard.</p><p>* My HA is capable of above 130dbA SPL, however for many good and obvious reasons it's not recommended to exceed 130dbA SPL. I assume all SPL figures to be "A" weighed.</p><p>** A different HA meant for mild-moderate HOH people is capable of going up to 8000Hz. HAs for profound losses don't go much above 4000Hz for many good and obvious reasons.</p><p>I will have to find out what SPL my HAs have been set at. I can tell you right now that I am happy with the SPLs up to 1000Hz. I barely hear anything at 1500Hz and I am going to find out if it's my HA or if my cochlear dead regions start around 1500Hz. Ill also find out what's the min dynamic range required to get usable aided hearing. I do know it's more than 1db, probably at least 5db. If so, subtract about 5db from the worst unaided audiogram.</p><p>There are no 120db HL figures above since my audiologist said a 120db loss can't be touched/aided by any HA. For those with 120db HL, it may in reality be 116 or 117db since you didn't respond to a 115db tone so the next increment was 120db which you responded to. You may also have the SPL set to 132-136 dbA. Some people experience discomfort and risk damaging their residual hearing but they feel they have no choice. I do have a choice for the low frequencies and don't need insane amounts of SPL. I would rather not hear 1500Hz than hear that frequency with the SPL turned up to uncomfortable levels. HAs should never be uncomfortable and right now they aren't for me. My audie is going to try for more gains and even SPL and that will depend on comfort levels. Maybe I can get a couple db more, well see. </p><p>I would get a CI myself if my low frequency hearing got much worse to the point where HAs ceased to be useful. I have no high frequency hearing and little mid frequency hearing but a decent amount of low frequency hearing and that's where most of my benefits come from. 75% of sounds and 60% of speech takes place at 500Hz and below so I don't feel I am missing that much by not hearing any high frequencies. I still have some mid frequency hearing so I can hear more than 75% of sounds and 60% of speech. I have read some good articles on the usefullness of those with left corner audiograms who have mostly or only low frequency residual hearing. Ill post about that some other day and link to the article.</p><p>I am tired now, ill keep you guys updated with any new facts and experiences. Thanks for reading, feel free to comment and I shall respond.</p>deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com1tag:blogger.com,1999:blog-7613875314868339925.post-71961501825678720592009-05-12T04:01:00.000-04:002009-05-12T04:08:04.823-04:00Person with no high frequency hearing can hear phones unaided!<p>I found the below post from a forum. I have bolded the important part. This man hears unaided better than I hear aided! It's likley his cochlear dead zones are around 1500Hz and especially at above 1500Hz. He did reach the pain threshold(120+ db) in the high frequencies. Ive said it before that my audiologist is correct that a 120db HL can't be touched/aided by any HA because you hit the pain threshold among other good reasons. I have learned so much by reading other's experiences with hearing loss and hearing aids.</p><p>------------------------------------------------------</p><p>Subject : HA recommendations for ski slope loss<br /></p>posted by DAW on Thu Apr 5, 2007 3:36 pm<br />Hi,<br />I'm new to this forum, but have lived with hearing loss since birth (now 47 years old). I tried aids in the past (15 years ago), but they did not help. Latest audiogram (4/2/2007) shows 25 to 30 dB bilateral loss from 250 to 750 Hz, 70 dB at 1000 and 100 dB plus at 1500 and beyond. These numbers shows minor degradation from audiograms in 1992 and 2001. <span style="font-weight:bold;">I function fairly well unaided in a business setting and on the phone</span>, but have the typical struggles in noise. Obviously, technology has come a long way in 15 years and I'm ready to give aids another try. I have 2 sisters and a brother with similar loss and we've all made attempts with aids over the years without success, until recently. My oldest sister is participating in the University of Iowa's hybrid cochlear implant trial and is seeing benefit from a Savia 211 BTE in the ear that didn't get the implant. She let me try the Savia (with her mold), but the sound had an obnoxiously loud cheap transistor radio quality. Does anyone have any suggestions for an aid? I have an appointment on 4/12 to select an aid to trial. The audiologist is suggesting GN ReSound Metrix as an alternative to Savia or SaviaArt. I've read in some of the threads here that Phonak MicroPower can be inappropriate if your loss at the low frequencies is not high enough, is this true for other power aids as well. It may not be worth bothering to amplify frequencies above 2000 Hz, since I begin to experience pain with amplification just 5 dB beyond audibility.<br /><br />Thanks in advance for any help.deafdudehttp://www.blogger.com/profile/04653461540973603928noreply@blogger.com1