Monday, February 15, 2010

Simulating 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.

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.

85 comments:

  1. Hey! I've been following your blog for a while. myself I'm profound deaf, went to deaf school, my parents learned to sign etc. So I'm a part of deaf community, but recently I just realized that the deaf community is just a small part of a much bigger community. So I decided to get new hearing aids (phonak naidas), I'm using them every day as well now, I used hearing aids as a kid but on and off all the time. I think I can hear the difference between some letters but I'm not sure if my brain is playing with me and if it's too late to learn to hear. I lipread pretty well and I can speak clear. Just wanted to see if hearing aids could be helpful.
    I'm curicous if you can tell me out from seein the audiogram what I'm supposed to hear with my hearing aids?. 250 - 70 db, 500 - 90 db, 1000 - 110 db, 2000 - 120 db 4000 - 120 db 8000 - 110 db. Thanks:)

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  2. This is an interesting blog post, Just curious why you stimulated mixed hearing loss?

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  3. deafDude -- do you know why you were born deaf? If there is a genetic reason for your deafness, then all of your cells have that the same genetic profile. For example, if you are deaf because of connexin-26 -- a very common cause of deafness in people with hearing parents -- ALL of your cells will have that deafness-causing version of the gene, so even if a lab was able to harvest and inject the stem cells, they might not work. The same thing lacking in your original cochlear cells will be missing from your stem cells too.

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  4. If you speak perfectly and oral is the best way for a child to be educated, then why can't you write English? Why are you still living at home? Why is 50% of your explanation "my dad says.."?

    So being oral got you a dude in his 20's living at home with no friends (certainly no girlfriend), obsessed with a cure for deafness, and who's only expert is Daddy....awesome!

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  5. I sign and I speak and I listen. The interpreter is wrong about deaf becoming mute once they learn to sign. That is very erroneous.

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  6. *Heavy Sigh*

    Again with the 'sign hurts speech' lie! This is not and has never been true. There is *no* evidence to support this hurtful claim. In fact, there is good evidence that the opposite is true - that is, Sign gives babies and children a head start in language development.

    Why else do you think Baby Signs is so popular with the parents of Hearing kids?

    David

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  7. If DeafDude was born deaf due to connexion-26 expression, than stem cells won't help, but gene therapy might--unfortunately, that's a bit futher down the road than stem cell treatments (don't know how far).

    I'm cautiously optimistic about stem cell efficacy. I've read all the reports about Chloe Sohl, but I'm troubled at the lack of real research information on this case.

    I'm HOH (45 db loss) and have tinnitus due to noise trauma (which really sucks). If stem cells were proven to work and are affordable, I would certainly go to China or Mexico to have the treatment done.

    DeafDude, keep up the good work and ignore the haters. You're bringing information on this exciting field of study to those who need it.

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  8. "Otonomy Receives FDA Clearance To Initiate Clinical Trial In Patients With Meniere's Disease"
    source: http://www.medicalnewstoday.com/articles/179502.php

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  9. Deaf Dude. Good to see you posting again. I was begining to worry about you. I know we have opposite views on CIs and stem cells etc but I am always interested to read what you post.

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  10. hi Duke

    I very pleased to read your postings. You have my support

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  11. Hey Deaf Dude,
    Good to hear from you again. Thanks for the update on stem cell treatment. I didn't consider before about how having a genetic cause of deafness could affect stem cell treatment, so I hope you will post a reply to those comments.
    Sarah

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  12. "American Auditory Society
    PROGRAM FOR THE 2010 AAS MEETING
    March 4-6, 2010, Scottsdale, AZ"

    "....
    1:30 pm – 2:30 pm Translational Research IV
    Jay Rubinstein, MD, PhD, Moderator
    Making Hair Cells
    Stefan Heller, PhD
    Stanford University School of Medicine, Stanford, CA
    2:30 pm – 4:45 pm Special Session – Biological Therapies for Hearing Loss
    Jay Rubinstein, MD, PhD, Moderator
    John Brigande, PhD
    Oregon Health & Science University, Portland, OR
    Jennifer Susan Stone, PhD
    University of Washington, Seattle, WA
    Hinrich Staecker, MD, PhD
    University of Kansas Medical Center, Kansas City, KS
    4:45 pm – 5:00 pm Summary & Adjourn
    6:30 pm – 10:30 pm Off-Site Event"
    source: http://www.amauditorysoc.org/annual-meeting/documents/2010_Agenda.pdf

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  13. Your info is always GREAT!! It is very useful for people like me who are a bit too technically challenged and get stuck on how to get better info. I agree with you that CI is only for people who are 100 % deaf and who are oral. Do keep posting infos.

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  14. I have to disagree on the point that sign hurts speech. In my case, I grew up with both methods of communications, and I do quite well with speaking.

    I'm also confused on the stimulated hearing loss experiment. What were the hypothesis(es) that you were attempting to test?

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  15. Thanks for this post. Very, very interesting. I look forward to more of your posts.
    I had a similar run in with an interpreter. She spoke of how sad it was that I did not grow up with ASL. It made me so angry. I wrote about it in my blog. Geez, I do not understand people who try to recruit complete strangers into the signing deaf community.

    (e

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  16. Hi deafdude. I live in Mexico do you know the name of the Stem Cell Clinics in Mexico that are treating patients? Where did you obtain that info?
    Thanks in advance

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  17. hi,have just become a follower of your blog through ruchi;s blog.I enjoyed reading this post.As a hearing impaired adult,i cant agree with the fact that sign impairs speech..i feel it depends a lot on ones beleif in what works best.Both play a role--sign and oral speech in speaking.
    Will be back again to read you,
    and all the best for the stem cell
    :-)

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  18. Hey DeafDude,

    I'm profoundly deaf from Australia. I got one CI (for right ear) and while growing up I was taught to speak and listen. I can speak very well despite many deaf people not be able to do it as well as me. I know a tiny bit about sign language but that's it. I can only use sign language when there's others using it which isn't often so I speak 99% of my time anyway.

    Like you I plan to get stem cell treatment to be able to hear. Of course, I will only do this once everybody including you has done this.

    All the best,
    Marty

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  19. Stem-cell therapy for the inner ear...

    source: http://blog.naver.com/PostList.nhn?blogId=medsem77&categoryNo=31

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  20. Is it the same company RNL Bio, which did Chloe's deaf treatment, that is doing the new stem cell work. My own doctor an ENT specialist said the treatment might be coincidental with the recovery of hearing. He says she was only deaf briefly and that sometimes, rarely, it comes back by itself without explanation. So in other words the stem cell treatment was coincidental with the hearing recovery and did not contribute to it. I'd be interested to know if someone with long term hearing loss, someone who got bad hearing and had several years was helped by this. I contacted RNL Bioscience and I was told it would be a about $30,000. So that's a bit costly, if it doesn't work. If I thought this would work for me, i would definitely do it, and take out a loan to pay for it. But now, I don't know. Do any of the deaf stem cell pioneers have their own blogs to follow? I can't find any, thought there are several with other conditions being treated with stem cells but not deafness.

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  21. Some tinnitus / recruitment (or hyperacusis) sufferers in all those stem cell cases ? (logically, if yes, which results ?) It should be another breaktrought for all these "symptoms"..

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  22. Have there been any other successful cases like that of Chloe since her stem cell treatment, either at RNL Bio or elsewhere? One would think after the news of her successful treatment were made public that the deaf and HOH would be very interested in undergoing the same procedure that she did to recover their hearing. Maybe the cost ($30K) is a bit of a barrier.

    It is a bit discouraging that this event hasn't made the mainstream news and that the medical community seems to disbelieve in the efficacy of the RNL treatment of Chloe.

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  23. What you have to ask yourself is why in the world the procedure costs 30 grand. They take some cells from your body, cultivate them, inject them into your ears, and wait for the magic to work. There is no major surgery involved and no complicated procedures. The whole thing should run you a few thousand dollars, tops. The point is, the pioneers are paying a lot to fund their research efforts, as another post has mentioned.

    Signed,

    The Skeptic

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  24. I'm hoping that here in the united kingdom with our NHS (national health service)the cost will be minimal,as there are alot of services free here eg;hearing aids,operations etc,and the RNID seem to be backing the advancment of scientific breakthroughs such as stemcells etc,rather than the old school HA's and all that,which for me is fantastic having hearingloss and tinnitus,Icant get away with hearing aids Im afraid.

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  25. Be thankful your NHS actually covers HA's at all. Most American insurance plans just don't, plain and simple.

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  26. Westfield donation aids deafness study
    source: http://www.privatehealth.co.uk/news/february-2010/westfield-donation-aids-deafness-study-32765/

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  27. Yes,I guess you're right, we do have alot to be thankful for here in the UK health wise,but I do hope the States is turning towards a more national service,if we've talked about trials being 5 years away in humans,then it seems 10years from now would be a certain target.I count the days at the moment as my hearingloss and tinnitus has cornered me into isolation almost,the way this condition tends to do,so I rejoice at every step forward scientists make,and believe we're on course for that joyous day.

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  28. spanish: BUSQUEDA DE TRATAMIENTO PARA LA SORDERA NEUROSENSORIAL
    http://asoc-fulbright.es/beca-de-la-asociacion/proyecto-a-realizar-por-rodrigo/

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  29. Are there any other "Chloes" out there, I mean, anyone treated using the same procedure that she was successfully treated with? If there are, I'd like to ask where they had their treatment performed at, with whom, and how much did it cost? What were the results?

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  30. "Deal watch: Novartis licenses GenVec’s hearing loss programme"
    source: http://www.stemcellstherapy.tv/deal-watch-novartis-licenses-genvecs-hearing-loss-programme/
    or
    http://messages.finance.yahoo.com/Stocks_%28A_to_Z%29/Stocks_G/threadview?m=tm&bn=7976&tid=97403&mid=97403&tof=6&off=1

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  31. hi Anonymous

    Can you post a English translation to the spanish link ?

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  32. Genvec Inc Presentation Teleconference GNVC US
    2010-02-08 19:06:29.711 GMT
    http://www.investorvillage.com/smbd.asp?mb=1195&mn=6078&pt=msg&mid=8582724

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  33. I just don't know what to think of the stem cell treatment. With your hearing loss it seems you could benefit from the cochlear implant or the hybrid. But if you don't want that and you have your heart set on stem cells in the future, go for it. Or you could implant one side with the non-invasive hybrid and leave the other side. You should be able to get some decent correction with your hearing loss with good aids too. And at your age, there is no reason not to take ASL. You have already learned to speak. Lots of late-deafened HH/deaf people learn ASL to enhance communication. There are many avenues to try. None are right or wrong. What's best for you is what counts. :-)

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  34. Hi Dude,

    Nice Blog. Hope the stem cells treatment will be 100% therapy soon.

    According to this article

    http://gantdaily.com/2010/03/07/psu-probing-question-can-deafness-be-cured/

    regeneration of hair cells may be on the horizon at least within 10 years.

    Hope the 10 years will be reduced to 2-3 years.

    Sebar

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  35. It now seems that cochlear hair cell regeneration is going to happen as sure as day,I speak from a late deafened musician who from day to day monitors my own progressive hearingloss and increasing tinnitus,that with all respect to 'The Deaf Community' TEN YEARS seems long,long and difficult to wait for,I'm 53yrs old now,and trying NOT to wish time and my life away,but my prayer is that this miracle of of stem cell bio/technology will hasten to maybe only a few years,again, i respect the deaf community,for me, and alot of my musician colleagues long to rid ourselves of this daily SRTUGGLE,the same srtuggle Beethovan experienced.

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  36. Kim, my hearing is far too poor for a hybrid CI. The regular CI is risky and will destroy my chances of getting stem cells in the implanted ear. What's the point anyway when stem cell technology is available now outside America? I am saving up for it and waiting for more pioneers to get it and see their results. I discuss CI and stem cells many times thruout my blog.

    I don't believe in hybrid CI(they don't help much, sometimes not at all), if my hearing is good enough for a hybrid CI, I can simply use transposition on my HAs. Even without transposition, I would hear way better than I do now and also be able to hear some sounds unaided. I would be happy if stem cells gave me a such outcome. Ill just save up for a 2nd round of stem cell treatments in the hopes of further improvement, why get CI?

    Stem cells may be around 15 years away in America, but it's here in many other countries. If you want to be a pioneer, email one of the reputable centers and they might accept you and treat you. I am not waiting 15 years, well I would if I could hear well with HAs but I don't. See my audiogram, my hearing is worse than I thought. I may get stem cells in 2011 if all goes well with the pioneers of 2010.

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  37. Unless we develop a technology that the newly
    divided inner ear cells would NOT be eliminated by the ear. The stem cell technology is still a long road. At least 20 years.

    "Hair Cell Research--Some
    Unexpected Results" (December, 2009)
    http://hearinglosshelp.com/weblog/?p=486
    But experimental models have shown that we can induce some levels of regeneration by stimulating genes that cause cells to divide. So we do see an initial burst of hair cell regeneration, but then the ear somehow senses that these new hair cells are not normal—that this should not happen—and eliminates these cells.

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  38. So this is Dr Cotanche speaking on this Hair cell Research article(december,2009),and he's saying they need to find a way of keeping the new regenerated cells from being rejected by the cochlear etc,and mentions it could be 20years down the road.Well reading this article I feel my world has just caved in,my initial thought was dispair,but he added at the end that they were getting there 'Slow but Sure', which i suppose is encouraging,surely though,there'll be many more breakthroughs within 20years,was he playing safe?I think he was.

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  39. Hi

    Don't be despair. I have read they have identify way to kill the culprit and so they have learned they can inject suppressing-turn-off gene (eg retinoblastoma or Rb1) into the cochlear.

    Also good news : another team has invented a device which can deliver stem cell. A first in history thing:

    Please see :

    http://www.eurekalert.org/pub_releases/2010-03/ef-cdt031210.php (external link, opens new browser window)

    video:
    http://www.youtube.com/watch?v=fcTUsgIdlAI&feature=related (external link, opens new browser window)

    Picture of the device:

    http://www.basqueresearch.com/upload/txostenak/2599_MicromanipuladorOidoInterno.pdf (external link, opens new browser window)

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  40. To access the link, copy the link and delete the words "(external link, opens new browser windor)"

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  41. Thank you very much wongtanlim3,I'll look these up.

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  42. Seem blocking Rb1 is 1 way to prolong the survival of new-born hair cells (see para 10 of :

    http://www.nidcd.nih.gov/research/stories/archives/06/04_01_06.asp

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  43. I totally disagree with you ! CI is still way ahead of stem cell technology ! No question about it. Stop playing games with everyone here. This is in fact a propaganda ... Enough is ENOUGH. This is way over-hype comments. It is your audiogram.

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  44. Thanks for the links, wongtanlim3. So what will happen to Chloe and the few others who already got stem cells? Will the improvement last? If not, will they need stem cells again but with Rb1?

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  45. I'm no scientist,but you would think any regenerated cell would have the same life expectancy of an original one,I hope soon we'll get some feed back from these patients.also,i don't think these are 'Over-hype'comments,as an anonymous person suggested,here in the UK,the 'RNID'and 'Deafness UK'are really leaning to a very soon cure using stem cells,ie,research seems to have turned a corner of late,and the cure is in their sights.

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  46. Some very angry anti-Stem Cell people here. Face it, in few years, CI will be obsolete and you will be stuck with failing, obsolete technology buried in your skull.

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  47. hi Duke

    Yes, RB1 is necessary in any treatment to suppress the body own defence mechanism to kill off newly grown cell from stem cell or gene therapy Atoh1

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  48. Yes, they find stem cells a threat. Funny they hype CI as the "latest and greatest" when stem cells is available and being used on people like Chloe with great success. My friend gives it 5 years before CI is obsolete.

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  49. Well done to Stefan Heller,i think he's my hero,him and his team at stanford in this new breakthrough for regenerating cochlear hair cells.CONGRATULATIONS!great,great news,thank you.

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  50. If you're suffering from hearing related problems and are looking for an alternative to expensive hearing aids or surgery you may want to look into natural treatments for hearing loss. Hearing Loss Treatment can help you. New research shows that certain supplements, vitamins, minerals and herbs can be used effectively to improve hearing.

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  51. Does this really work?or at least do you know anybody that has found it successful?thank you for the info anyway,

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  52. Sign language interpreter is very helpful for those people who have hearing loss problem or deaf.
    Thanks to sharing your experience.

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  53. The biggest problems in "stem cell" treatments are 1. if you have genetic deafness, your harvested stem cells will STILL have the mutated gene and 2. Stem cells need signals to differentiate and become specialized cells. The cochlea has more than a dozen completely different types of cels and if any one type is missing hearing will be affected. Stem cell transplants to the inner ear would require infusion and chemical signals being injected into the cochlea.
    The additional immunosuppressive therapy would put you at an increased risk for....hearing loss!
    Stop pretending to be a scientist, stop skewing the facts and please stop misleading people.

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  54. It's silent at the opposite side

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  55. Hair Cell Research—Some Unexpected Results

    by Neil Bauman, Ph.D.

    Hard of hearing people are impatient for hair cell research to bring forth positive results so they can have their hearing restored to normal or near normal. That is their desire, but this reality is still far in the future.

    In spite of all the advances that have been made in recent years, hair cell regeneration in humans is still at least 20 years away according to Dr. Douglas A. Cotanche, an Associate Professor in the Departments of Otolaryngology—Head & Neck Surgery, and Anatomy & Neurobiology, at the Boston University School of Medicine in MA.

    Dr. Cotanche explains, “We are still in the very early stages of developing techniques for inducing hair cell regeneration in damaged mouse and guinea pig ears. To date, we have not yet perfected a technique that leads to full, or even partial functional recovery in a damaged cochlea. We need to accomplish this before we can think of trying therapies in humans. I would project that a potential therapy will not be available for at least 20 years.”

    Before human trials can begin, according to Dr. Cotanche, “We would need to be able to show that the therapy did not somehow cause a reduction in the surviving hair cell population and lead to further hearing loss.”

    You see, some unexpected negative results have shown up in the animal research undertaken so far. As Dr. Cotanche explains, “We know that mammal cochlear hair cells will not regenerate on their own when the native hair cells are lost. But experimental models have shown that we can induce some levels of regeneration by stimulating genes that cause cells to divide. So we do see an initial burst of hair cell regeneration, but then the ear somehow senses that these new hair cells are not normal—that this should not happen—and eliminates these cells.”

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  56. Thanks for sharing this experience of yours. This is going to be very helpful and also can help other people.Sign language interpreter is one thing that you should consider.

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  57. Useful site, where did you come up with the knowledge in this article? I’m happy I found it though, ill be checking back soon to see what other articles you have.
    hearing loss treatment fremont ca

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  58. Was Chloe taking immune supressants after the stem cell theraphy?

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  59. I think that Chloe was taking immunosupressants. If you look up sudden deafness syndrom, there is reference to hair cells being destroyed by a person's immune response. Usually high dosage Prednisone is prescribed for a week and then the dosage is reduced. I think that after I get the 6oo million stem cells, I will put myself on to 5-10mg of Prednisone a day for 2-3 months. If I notice any sudden deterioration in my hearing, I will increase the doseage of Prednisone for 7 days and then reduce it gradually to 5mg a day and then down to zero. Prednisone is qite cheap and easily available. In higher doses, it is quite toxic (one guy I work with is on 25mg a day and he has a moon face). I also think that by injecting the stem cells into the blood, the growth of cochlear hair cells is slower and that you are less likley to get an immunse response that kills off the hair cells.

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  60. You don't need immunosuppressants because the stem cells used are your own!

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  61. The immune response is to the hair cells growing, not the stem cells. In my case I only have high frequency hearing loss and a problem with cochlear microcirculation of blood. I therefore do not think that I will need Prednisone, but will get some anyway. Chloe's father did not email me back when I asked him what immunosupressants Chloe was taking. Chloe's immune system was working overtime however so she needed immunosupressants. Deaf Dude - my advice to you is to get some Prednisone over the internet and then to take 15mg a day for a few months after stem cell treatment. Then reduce the dosage to 5 mg a day for 2 week, then 5 mg every other day for 2 weeks then stop. You have many more cochlear hair cells to grow than me. I am not a Doctor by the way.

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  62. Ill be sure to ask the stem cell experts this, but I highly doubt I need immunosupressants because I don't have any autoimmune diseases, Chloe did.

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  63. I had fat taken by liposuction a couple of weeks ago ready for stem cell theraphy. It was not painfull, but I looked like I had been kicked in the stomach by a horse for a week afterwards! I will be getting the stem cells after Christmas 2010. I am getting 600 million of my own adipose derived stem cells after expansion. I will send you before and after audiograms. I am going to order some Predisone soon. I will not tell you where I am getting the treatment done yet.

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  64. Keep us posted anon from dec 4th...very interested...wishing you luck as well.

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  65. Same here, I wish you luck and hope you get a big improvement! I need the pioneers to be successful before me and my parents can justify me going ahead next.

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  66. Your posts always amaze me. I think this is something that will make someone in the same situation inspired.

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  67. I am going this weekend to get stem cell treatment for my hearing. I am following Chloe's protocol. I will let you know how I go and where I got the treatment in the future. I just hope that it works, as otherwise I have wasted a lot of money. I am actually going to excercies my hearing while getting the treatment and afterwards. By this I mean that I will listen to the TV at very low volume and strain to make the words out. I will also do this excercise with a fan going to simulate a noisy room. In addition I will take Ginkgo Biloba to increase the blood flow to my cochlea and thus get more adipose derrived stem cells into these organs. I might listen to high pitch music at very low volumes as well. I broke my leg several years ago and had I just sat in a chair and not tried to walk and run,it would never have healed. I am thus going to use a similiar philosophy for my hearing.

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  68. I wish you all the luck in the world! Can you share your "before" audiograms? When do you plan to get stem cells?

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  69. L. Francis. I got 600 million adipose derived stem cells from Cryocord in Malaysia for $20,000 US following the same procedure as Chloe, i.e. 200 million cells every 5 days intraveneously. I stayed in a 5 star hotel for $70 a night for two weeks and people from Cryocord picked me up and took me to the Surgeon who administerd the stem cells. The Cryocord people also took me out for lunch. I paid an extra $4000 to get 100 million more stem cells and got both knees and my left ankle injected by an Orthopaedic Surgeon, as I have the start of cartillage problems in each. The whole thing went very well and I do not have any bad side effects. I think that my hearing has already improved a bit, as I now find my hearing aid to be too loud. I got a cold in Malaysia and thus my ears have been a bit stuffed up, but the cold is now going and I am finding that I can listen to the TV at a lower volume even with a loud fan going (I live in Sydney, Australia). From what I have read, my hearing and will continue to improve over the next 12 months as nerves regenerate slowly. I found that I did not need the Prednisone. I took Ginko Biloba one hour after being injected with stem cells and this helped get them into my middle/inner ear. 20 March 2011.

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    1. Hey L Francis,

      It's been two years since your treatment..Has it improved since the last time you had hearing test?

      Delete
  70. Keep us up to date on your progress! How bad was your hearing before? Could you hear at all without HAs? What about now? Got any audiograms?

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  71. L.Francis. I will send you my before and after audiograms in another couple of months or so, when I get the latest one done. I have moderate hearing loss in the high frequencies, sustained as a result of me falling off a cliff and banging my head 14 years ago. My hearing was getting worse as a I got older (I am 48 years old). I also have problems with blood flow to the inner ear and have taken Ginko Biloba for a long time now, which improves my hearing. I wear one hearing aid in my left ear. I also take vitamin pills and go running at least once a week.

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  72. Now it is a month after I had my stem cell treatment following Chloe's protocol. I have had stuffed ears due to a cold and this worried me a bit, i.e. that my immune system had started to kill off my regenerating cochlea hair cells. I thus started taking Prednisone - 15mg a day. After a week I read on the internet something obvious - use an over the counter nasal spray for colds, which I did. My ears are now clear after three days of using the spray and I will wind down the Prednisone over the next week (5mg a day for 3 days, then 5mg every other day, then none). I am now noticing high pitched sounds a lot more and many of them appear to be very loud - this is a symptom I think of my high frequency hearing getting better. I also notice my hearing aid whistling a lot more.

    The Ginko Biloba is important for me I think as it gets blood into the middle ear and fluid into the cochlea and thus provides the hair cells with nutrients with which to regenerate.

    My knees and ankle which I got injected with stem cells are now also much better, and the swelling afetr running is not as bad. I will probably get more improvements in the next month or so, as the stem cells turn into cartilage.

    As I said, I will get an audiogram done in another month and send it to you, along with my one before treatment. L. Francis

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  73. 4 months post treatment, the below shows my hearing. L = Left hear before treatment, L1 after treatment. The results are in dB's. I would like to get the treatment done again as I think that I would gain an extra 20-25db, but I cannot afford another $20,000. Had I known what I do today, I would have asked Cryocord in Malaysia (who did the treatment), to store some of my fat . That way I would not have to get Liposuction done again, which cost approximately $4000. I think that it is best to get round 1 done, then round 2, 6 months later, so your body does not start recognising the stem cells as invaders and your immune system reacts accordingly.

    1000 L:0, L1:0, R:0, R1:0
    1050 L:20, L1:10, R:10, R1:10
    2000: L:10, L1:10, R:0, R1:0
    3000: L:35, L1:10, R:25, R1:0
    4000: L:65, L1:30, R:30, R1:10
    6000: L:70, L1:50, R:65, R1:40
    8000: L:75, L1:55, R:70, R1:500

    L.Francis

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  74. 8000: L:75, L1:55, R:70, R1:50 I meant

    L Francis

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  75. Hi L Francis, I live in sydney, it is possible to contact you? my daughter has the same problem and do test in austrlian hearing every year, my contact phone 0421531390, you can send message to me, thanks

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  76. Congratulations L.Francis !! Great recovery..
    Do you think it can improve even more in the next few months ?? I remember reading somewhere that recovery extends up to a year and optimum results show up between 6-8 months...
    Chloe's audiograms showed maximum recovery a year after the treatment.
    Anyway thank you very much for sharing your experience w/ us !! I greatly appreciate that.

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  77. Anonymous said...Check below Link:
    http://www.stem-cell-center.com/?gclid=CIf2-vaQqKsCFQGApAod7nlm4Q

    J.Z

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  78. Only 5 million stem cells? I can get 600 million for only 3x the cost overseas.

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  79. Hi deafdude,
    Could you tell me hhere you can get 600 million cell.

    J.Z

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  80. There is no proof of this L Francis. No articles what so ever. At least Chloe had articles, video footage. Be careful

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  81. Dear Deaf dude,

    Why is t a long time very very quiet from your side?

    Best,
    DC

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  82. Thanks for sharing this type of post.. I just want to say keep it up.You are doing so good job..:-)

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  83. Me and my wife would like to give our ears so our son can hear without using a hearing aid and a cochlear implant. Is there any hospital can do it? Email: adhika.p@live.com

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  84. That’s a very informative article. Thanks for sharing such useful information. Keep up the good work. I have found some interesting information on Hearing Aids Online In India.

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