Saturday, November 7, 2009

Chloe gets stem cells and doesn't need HAs anymore!

Origional source

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!

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.

link to my friend's blog with youtube video

I showed the youtube video to my dad(the video above now has CC)
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.

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.

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!

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.

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.

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.

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.

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.

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.

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.



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.

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.

27 comments:

  1. Great news to hear. I can only hope the rest of the world catch up or relax regulations on stem cell usage and start offering real cures to hearing. I was born profoundly deaf, and I will take up my own stem cells for hearing after everyone else has done theirs, to make sure it's proven and is reliable :)

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  2. a 20-40% is a lot, and for many hard of hearing it will bring their hearing up to near normal. I wonder if this treatment is permanent, such as when reaching threshold of at least 90 percent of hearing, will it go down after time? Or will it be permanent? Withy my hearing of 65 to 75 DB, it will bring my hearing anywhere near 25 to 40 db, astounding! I know of many from my generation who has lost some hearing due to environmental factors, and I'd be up there with them.

    The burning question I have is, how does one get into clinical trials? I'm so impatience, and reading more about all this just gets me antsy. Drives me crazy, dude! ;)

    Gina

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  3. The time to hear is now!

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  5. wow that's great. deafdude have you asked around if they do try to treat prelingually deafness or only postlingually?

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  6. Gina, I will answer your questions in my new thread tomorrow. I have asked if they can treat my deafness, ill let you know.

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  7. deafduude, I'm in the same boat as Gina.

    I would like to know where Chloe went to cure her damaged hearing with stem cells. I'm on the verge of suicide. I don't think I can wait much longer.


    Thanks,
    Thomas

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  8. I have found it.

    To get into clinical trials:
    http://repairstemcells.org/Treatment/Treatment-Request.aspx?d=Hearing%20Disorders

    Thomas

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  9. She traveled overseas to get stem cells. I might go to Mexico to get stem cells. Why are you suicidal? Share your story.

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  10. There are many reports that show the stem
    cell reports you referred may be faked.

    http://health.hf2y.com/hfeytj/news/news1read.asp?id=1133

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  11. I contacted RNL -it's about $30,000 plus your cost of going to China or Japan. It's only been successful in one person with a sudden hearing loss. My ENT doc says it might be a fluke, that here hearing might have recovered anyway without the treatment. He doesn't see how or why it would work and that the treatment and recovery might be coincidental. Hopefully, RNL Bio will report more success stories, maybe with someone who recovers from a hearing loss after several years, which is what I have.

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  12. Chloe's hearing loss had been ongoing for 3 years and nothing helped except her fat derived autologous stem cells. I can get cord blood stem cells in Nepsis for $9000. It has already been proven to work on animals and several human pioneers.

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  13. I lost my hearing at 4 years and have no recall of those pre-mumps years and wear HA's and am in a Twilight Zone...I'm not in the deaf culture at all and I'm barely surviving in the hearing world -it's what I know, now I'm 44 and my hearing suddenly worsened by 20db in the last 3 years and the tinnititus has got me almost in dispair. I have been urged to consider CI and I REFUSE. These will be obsolete very soon. Stems are the future and hell I'd rather do it now as I have nothing to lose. People do not understand that CIs destroy the cochlea and they will never be stem cell candidates but thats their choice. Mine is stem. Bring it on. I'm all in for being a test subject.

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  15. but, the cure is only for inmunologic cause, what about cochlea's membrane rupture? where is the hospital where she get treated? Im so excited about this news...

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  16. i've gotta say, i didn't know that stem cells had this ability. i was just talking to my mom about how i don't agree with the ci-- mainly because of the fact that it kills any residual hearing. my other reason is because i would still have to rely on "wearing something"-- and needing batteries. UGH, i'm tired of relying on batteries! (i have a bilateral profound sensorineural progressive hearing loss and wear two hearing aids) so then i went on to tell her that i would definitely go ahead with some sort of process if it didn't involve needing something to rely on.. well i guess i found the answer to that perhaps. nice blog, will definitely keep popping back in to see what's going on.
    i wonder if insurance will eventually cover the stem cells? that'd be something to ponder.. :)

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  17. I agree with you, Pam. No CI for me except as a last resort. I don't even wear HAs most of the time so stem cells would be great in letting me hear some sounds unaided. As for insurance, itll probably be at least 10 years and no guarantee they will even cover it. I am not going to wait this long.

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  18. Dear deaf dude,

    My name is Mina, and I am a TMJ patient. My hearing became impaired once my TMJ specialist refused to treat my improper bite, causing my jaw to go out of place, hitting an area behind the ear. We believe it ruptured blood vessels that were feeding the auditory nerves with oxygen and nutrients. My hearing tests show that I have 100% hearing, however, the doctor admitted that they can't detect sensitivity. I am now undergoing a new TMJ treatment that has improved a few things, but my main concern is my tinnitus (which is sensitive to external sounds, so I wear earplugs which may cause hyperacusis, but I don't know what else to do!) Does this mean that if things don't improve, I too am a candidate for stem cells to repair my damaged auditory nerves? Also, I live in Canada. Are there any tests available hear, or in the states, that would be able to prove that I have auditory nerve damage? Such as an Auditory Brainstem Response test? It is severely debilitating, and the only thing that is helping is an anidepressant from my Neurotologist that assists in quieting my tinnitus. It's only been 4 months so far. And feed back would be greatly appreciated.

    -Mina

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  19. Can you post your audiogram? Also try getting tested at 12000Hz or some other high frequencies as you may have a loss above 8000Hz. That could be where your tinnitus comes from. It's worth a try to get stem cells if you can afford the $30,000 cost and can't stand your tinnitus.

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  20. Unfortunately, I do not have the audiogram available, but I do know that most patients with TMJ caused tinnitus notice an improvement with the treatment. I'm hoping that my hearing will come back once the nerves/blood vessels are repaired, whether that be with the treatment, or a few years down the road with stem cells. I would really like to keep in contact with you in the future, seeing as you seem to be very knowledgable regarding the issue. Hopefully you'll be able to recommend an organization in a particular country that is trustworthy and successful in performing the treatment?

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  21. Dear deaf dude,

    This is great news!!

    I myself am suffering from otosclerosis. My hearing test shows that I have both conductive and sensorineural hearing loss. I've been really worried that my disease will advance into my inner ear and further damaage my sensorineural hearing, so I've been doing some research on genetic therapy and came across your blog.

    You mentioned that in China there is a clinic that can do stem cell therapy? I just want to let you know that I live in Hong Kong. So if you need help to contact the clinic or want me to go there check them out for you, I think i'll be able to help you.

    Good luck! Just let me know if you think of things that I can help you.

    Crystal

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    1. hi crystal, have u found the cure yet?

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  22. HI is there a way to talk to chloe. Can i have her contact info. my daughter has been diagnosed with hearing loss at birth. I want to find out about her experience in person. Please help me . We need to decide whether we should go for this treatment..
    Please reply.

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    1. she has a facebook. Its not hard to find.

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  23. This is great news! I hope this becomes a more widespread solution.

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  24. This treatment has been published in a research journal (see page 6): http://www.translational-medicine.com/content/pdf/1479-5876-9-181.pdf

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