Tuesday, June 9, 2009

Deaf treatment by stem cells likley to begin human clinical trials in 2015-2020

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.

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.

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.

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.

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 Deaf culture. 

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.

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.

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.

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.

38 comments:

  1. Re. whether it might be better to "save one's ears" for stem cell therapy by not having a CI: I was told by a couple of medical researchers that if you really are profoundly deaf and wait those approx. 15 years, then while your cochlea might be fine your auditory nerve will be degenerated from enduring lack of stimulation. Wich means that restoring hair cells will not be of much use. Same as people tend to have better results with CIs if they have been deaf only for a short while. Sounds *very* plausible to me, unfortunately. And like a trade off that's pretty hard to calculate. Did your source have anything to say on this?

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  2. Interesting post. If the stem cell development follows that timeline, I'll be 45-55 years old by the time it becomes available. That's a lot of years that had gone by, and I wasn't willing to wait.

    That said, (in response to Alex), a hearing aid can keep the auditory nerve sufficiently simulated for years. So if a deaf guy wants stem cells, he'll need to wear HAs every day 24/7 to keep his hearing simulated.

    Also, I disagree that the high frequencies are useless. More than half of the speech sounds are mid-high frequency, and I have been listening to people's voices with both the HA and CI. I only get maybe half of the vowel sounds through the HA, and none of the consonants. But I'm picking up SO much more through the CI. Yes, the highs sound shrieky and they CAN be annoying, but it takes getting used to and they don't bother me as much. They are necessary in picking apart the phonemes in order to understand speech - impossible to do with a HA on a profoundly deaf person like me. Those who say they are useless are taking them for granted, in my opinion.

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  3. Wow, it is amazing at what the possiblities could be.

    I'm happy the way that I am...I don't think I would take the risk.

    Good post.

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  4. There are a LOT of strong statements being made in the blog that I wouldn't trust from anyone who doesn't have a crystal ball. I mean, who can truly guess cost estimates for the future? Who can say the procedure is any "safer" than a CI implantation? What sources are you reading that definitely say "virgin ears" are better for future stem cell implantation, and to "save your ears"?!

    Stem cells aren't yet the holy grail of "curing" deafness. Perhaps one day no one will ever need to have a hearing loss. It seems like you're projecting a lot of hopes and dreams on this with little substance, just like some people do with cochlear implants as a "cure" for their hearing loss.

    Now, at HLAA, there is a symposium on the latest on Hair Cell Regeneration. I intend to attend and ask the panelists questions. They are fully accredited researchers, and one is even living in my city. Do you have any specific questions you'd like me to pass along?

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  5. Nabeel, I think the HA would not be able to do that if you are totally deaf in some frequencies. Might be wrong though...

    Dennis, I for once, would love to know what they have to say on how having a CI (possible danger to microstructures in the cochlea, esp. when extracting it) or not (lack of stimulation of auditory nerve) affect eligibility and prospects.

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  6. Could you cite some references, some peer reviewed papers for your statements?

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  7. I'll definitely take that question in. I've got a short list so far. I do have my own blog that I use for various topics including hearing loss, as positiveterminal.blogspot.net. Any further thoughts or questions, feel free to contact me there.

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  8. Hello, I'm an Italian engineer 50 years old . I suffered from progressive deafness till 14.
    CI stands for Cochlear Implantation ?
    I'm searching for web resources in the field of deafness, hearing aids and so on.
    High frequencies are definively important for understanding: I've experimented hearing with and without them, so i'm sure.
    This blog is very interesting, thank you and bye.

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  9. i completely disagree with the stem cell research because if i am not deaf who am i
    being deaf is an part of me it is who i am
    i mean i can understand why some people may want to be 'cured' but what i dont understand is the the question of what is there to be cured?

    if we are all perfect, this would be an boring world
    god made us like this just accept it

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  10. I am hard of hearing and I am missing out most of high pitch sounds. I hear low pitch sound pretty well, but it turns out that I cannot tell the difference for most consonant sounds, such as t, s, m, n. So it turns out that I hear voice mumbling instead of clear voice. This is why I need to hear high pitch sounds in order hear clearly.

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  11. i wud so love for my little boy to hear as he feels different from every one else n often stands alone in school i cant wait for stem cells .

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  12. He can get stem cells today. I might get stem cells as early as spring of 2011.

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  13. Deafdrummer here.

    A lot of sonic information is above 1,000 Hz. I'd go nuts without being able to hear that range up to 4,000 Hz. There's the Christmas bell songs, the upper portion of the tesitura of cymbals (frequency range response of an instrument that does not make a pure or single tone, but several tones at once where you hear the fundamental "glob" of the sound plus the harmonics above and below that sound), birds, whistles, high ends of rim shots on drums, the click of a bass drum beater on a quarter taped to the impact area of a bass drum head.

    You're going to love it when SCT is able to give you back that frequency range. Think Blue Monday by New Order or Every Day is Halloween by Ministry. Just wait... Hang in there!

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  14. I am curious what the highs sound like, it's been about 10 years since I last heard them. Ill be happy even if I only improve in the lows and even happier if I improve in every frequency. I have high hopes but modest expectations of stem cells. A 30db improvement would be really nice!

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  15. @Deafdude, what/where is your source for obtaining stem cells?

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  16. Excited to see that kind of method.

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  17. I am so sure that that kind of operation is going to be very effective. And I think all who has hearing problem will be cure.

    hearing loss

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  18. Hi deafdude, my sister has a baby of 5 months that cannot hear both ears. She is really interested for a stem cell treatment. Do you have any contact name or center that can help us in this path? dbac@seznam.cz

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  19. I got my treament done by Cryocord in Malaysia for $20,000 US a month ago. I stayed in a hotel and got the treatment done over 15 days, following what was done with Chloe. I am going to get my hearing tested in another month and send deafdude my audiograms. I am 48 and the treament is already working for me. I have a moderate hearing loss in higher frequencies. L. Francis

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  20. dbac, try RNL bio who successfully treated Chloe, but be sure to contact other centers as well. If the baby has any residual hearing, buy powerful HAs for her to wear till she can get stem cells. Avoid CI except as a last resort. I did fine growing up on HAs.

    Francis, We are all excited for you and look forward to your audiogram results next month!

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  21. I have got another cold. That is the second one in two months. I think that it may have something to do with the stem cells repressing my immune system. I usually do not get colds (well one every 2-3 years, anyway). It has now been two months since I got 200 million adipose stem cells injected every 5 days, by Cryocord in Malaysia. I have not yet got an audiogram done after this treatment, and I will probably wait another month. It would be a bit depressing if I got an audiogram done only to find that my hearing has not changed. I do not think that this is the case however, as high notes like birdsong and even plastic bags rustling now sound a lot louder than before. Also my hearing aid that is programmed to amplify high notes is no longer of much use to me, and it feels like I have a dead weight in my ear. L. Francis

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  22. I got my dates mixed up for the end of the treatment. I think that it was 23 March 2011. I will let you know the exact date next time I most (probably in 1 month's time). L Francis

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  23. "Post" I meant. **** cold! L. Francis

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  24. Deaf Dude - how long until the others got their audiograms done after treatment? For Chloe, 2 months was mentioned. How about the other sand can you send me a copy of their audiograms? Thanks L. Francis

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  25. I emailed Cryocord (where I got the stem cell treatment done), and they emailed me back to say that the benefits of stem cell treatment are not usually seen until 3-6 months after the treatment. I am 7 weeks after treatment. I will therefore wait another month before getting an audigram done. I have a volume control for my hearing aid which is good, as I now have to turn it down. I have also tried an online hearing test and from my last audiogram before stem cell treatment, I seem to have improved by 30db at the higher frequencies so far, which is where I have my main hearing loss. L Francis

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  26. This is very exciting, Francis! You probably don't need HAs at this point, I'd try going without them more and more and getting used to natural unaided hearing. Perhaps your hearing will improve even faster without HAs? Has stem cells also improved any other disabilities you have? I look forward to your before/after audiograms very soon!

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  27. I really hope this cure comes out before 2015. I've been HOH all my life, with profound hearing loss in one ear and the other ear is severe hearing loss.

    It's really challenging for me because it's really difficult to hear in loud areas especially as I'll be graduating from college and joining the fast-pace working world, and it makes me a bit insecure that I may not be able to keep up with it all because of my hearing loss. Can't wait for this opportunity to come soon!

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  28. Me too,just keep looking up.Best wishes.

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  29. @L.Francis, as you mentioned it earlier about stem cells injected every 5 days, where do the doctor inject the stem cells? in your ear or in your nose? Were you born hard of hearing? What was your hearing loss percentage? 70 db or ?
    Thanks, Me

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  30. I have not visited this site for a while! The stem cells get injected into a vein in your arm. The stem cells then enter your blood supplyu and some end up in your cochlear. If you take Serc, you can get more blood flow to your cochlear if necessary. I was born with normal hearing. I fell off a cliff when I was around 28 and banged my head; this lead to high frequency hearing loss and minor blood flow to the cochlear problems. Check the audiograms put up by Deafdude for my hearing loss. I have normal hearing up to 2000Hz, then a steep hearing loss. L Francis.

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  31. Can you share additional details with us? Has your hearing improved further? How well do you hear without HAs and have you stopped wearing HAs as you shouldn't need them anymore.

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  32. No my hearing has not improved further. I think that you get the most improvement in the first 2-3 months. After that, your hearing fluctuates anyway by a few db each day.

    A few things that I learnt about how to improve your outcome: 1. DO NOT smoke as this kills off stem cells (I am not a smoker). 2. Avoid alcohol for 3-4 months after the stem cell treatement. 3. Avoid anywhere with loud noise for 6 months after the treatment as the new hearing cells might easily be damaged (carry ear plugs with you at all times). 4. You need to excercise your hearing while it is developing, i.e listen to the TV at a very low volume and strain to hear it. This is most effectively done first thing in the morning after you get up, but also during the day.

    I only wear one HA and I got that re-programmed to reduce the volume. I also have a volume control for it and turn it down.

    There are also two devices that you can buy that increase your high frequency hearing. I have not used either of them, but I think that it would be worth trying to use one of them while your hearing hair cells are developing in the first 3 months after treatment. The devices work by playing high pitched music via an Ipod or similiar into your ears via headphones. One device has CE approval. I cannot remember their names. L.Francis

    I think as well that the younger you are and the more recently deafened, the better will be the result

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  33. Good luck to everyone and I hope that I have helped. L. Francis.

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  34. Is there any further improvement in the research. Are we progressing further.
    @Francis, how is your ear doing now?

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  35. Also i heard, stem cell treatment is doing wonders for other treatments related to bone but for hearing, it is still under development stage for therapies...... is it true ?

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