Saturday, August 28, 2010
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.
Some facts I have learned:
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. Chloe's 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.
2. Those researchers successfully restored 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.
3. I will share all the information I can get. Save both of your ears for stem cells which is superior 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 80db HL. They then will enjoy excellent hearing with a properly fitted and programmed HA in their stem cell ear.
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 genetic solution which ill get the chance to try in 5-10 years.
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.
6. A quick Google search shows plenty of proof that adult stem cells are safe and work while embryonic stem cells do nothing but cause tumors/cancer. Don Margolis 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.
7. A Google search using keywords such as "peer reviewed study stem cells" reveals hundreds of articles. Study demonstrates safety of cord blood stem cell transplantation protocol to treat neurological conditions. Another study in University of Pennsylvania School of Medicine proves that stem cells works for type 1 diabetes. This study conducted by Dr. Richard Burt shows adult stem cells could be used to treat MS.
Friday, March 5, 2010
I visited hearing dispenser for new earmolds. Got new audiogram. Discussion on stem cells, connexin26.
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)
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.
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.
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.
Audiogram image. Another audiogram image. Good article on connexin26, 30 missense mutation audiogram. GJB2 mutations with audiograms. Different genes/mutations and HL. Another article with audiograms. Research on HL. Long article on gene HL.
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.
Monday, February 15, 2010
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.
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.
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.
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.
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).
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.
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!
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.
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.
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.