Wednesday, November 11, 2009

Deafdude's Q and A post. Also funny, false, negetive stem cell quotes!

Here's a bunch of funny, false, negetive stem cell quotes! My comments appear in bold as a correction to those quotes!

Thank you for finally posting valid and reliable information. As your article points out, while promising results are being seen, much of the process in still in theory only, and there are many, many questions to be answered and problems to be solved before stem cell therapy will be available as a routine medical procedure. We are talking years. The easiest questions are the ones that have been answered. The ones that remain are the ones that are difficult, and will require much more research, including that of a longitudinal nature. Stem cells works today!

I am also a Type one diabetic saw this article onnline today about this stem cell discover so I e-mailed my doctor(this was his responce).
Nothing yet. This is at least 10-15 years from practical use. stem cells can treat diabetes today!

At least 15-20 years, folks. Stem cells are being done today!

Experts talk about the possibility to develop tumors if they won't find the right way to instruct the stem cells to stop their grow once the tissue has been repaired. using your own adult stem cells is risk free!

One factor keeps getting missed. What caused the hearing loss in the first place. Certain forms of SNHL like autoimmune & genetic may be a bit of a problem. Also most of us adults do not have cord blood stored anywhere. Chloe's SNHL is autoimmune and she was treated!

Provided it becomes available during your lifetime. Quite possible to die waiting. I can get stem cells for my deafness today!

Sorry, I can't agree to that position just yet. If you had said "may" instead of "will", then I'd be more inclined to agree with that position. It would be great if it does, but until we understand more and have more clinical trial results and write ups on stem cell restoring hearing, we can't say that with absolute certainty. Until then, it's hype since it's counting the eggs before they hatch. However, I do understand your viewpoints on how stem cells may be better. I would like to wish success to the stem cell research. Chloe's results are proof stem cells are way better than CI!(CI=still deaf) Chloe can hear without HAs!

As for costs and risk, this is pure speculation. You do not have any idea of the costs, no standard therapy does exist, nothing to base this on. The risks are not evaluated yet. In principle they are VERY RELEVANT. Scioentific papers talk about tumors. TUMORS vs facial paralysis/device malfunction. What's worse?
Remember we are still discussing in theory. Stem cells are not here yet, besides the claims of somebody. Stem cells cost about $30k vs. $100k for bilateral CI. The risks are nearly zero for your own adult stem cells.

Will, will, will, will, will.....
You HOPE. You have ZERO proof, and really high expectations. Why would you jump into something that is in no way proven safe or effective? And that is assuming that it ever does actually happen! 2 months later, Chloe's results are proof!

I will say one thing about high expectations. Regardless of whether stem cells or other forms of technology become available (and I really hope they do), some of us are really wishing for this, and high expectations come as a result. I may not be sure that any of this is realistic, but I have said how much I would love to be hearing, so I can understand other's high hopes as well. Stem cells are available and work today!

Hopes and expectation are quite understandable. All of us hope stem cells or any other thing could come right now and finally give a cure without risks and side-effects.
Unfortunately life is much much more complicated than dreams. Stem cells will come, they will be a step forward, but they will carry their own limitations, associated risks, failure rate, etc. They will follow some progress in the years and hopefully they will be the promised land of hearing restoring. Hopefully.
The question still remain unanswered is "when?". Stem cells are a reality today! Chloe hears without HAs!

Really?!?!?
Are you sure of that?!? Yes and I am correct.

You know....... you're saying that "stem cells" are the result of the improvement.......but for all you know the improvement may have been due to things like a well cleaned out ear canal, or whatever. You honestly think removing ear wax can help a SNHL? That's only for conductive losses.

As far as we know, all these news could be absolutely and simply false.
No peer reviewed publication, no proof of result. There has been proof in animal (pre)clinical trials for years and proof in human clinical trials overseas for months!

"One guy", "probably", "possible"...
Do you have ANY, any, any facts at all? Stem cells has been a reality for a while!

The results real or made up do not prove stem cells are ready for prime time. There needs to be data for speech discrimination and also other research centers would have to show they can get similar results and the results would have to be peer reviewed and published in journals. Chloe can hear sounds, music and understand speech unaided!

Stem Cells are not yet proven to be better than an implant. Yes, the results show an improvement but there will need to be much more data to prove stem cells are better than a CI. The upshot of the debate is that if someone with a severe to profound hearing loss desires to hear better now, and they qualify, an implant is a viable choice right NOW. If someone is in the prime of their working years and hearing loss is making it hard for them to function at work, getting a CI makes more sense than waiting years for stem cells. This would allow the person to stay with a job rather than having to quit because of hearing loss. Will children benifit from stem cells if they don't get the stem cells when they are young? Waiting might deprive children of speech and sounds. An implant can help them NOW! Stem Cells are an exciting possibility but it is important to be realistic. If someone wants to wait for stem cells that is their business. Chloe was a CI candidate but got stem cells and hears at 90% of normal(50% of normal in her bad ear) and doesn't need HAs!

She said that the young implanted CI kids are now doing BETTER than kids with moderate losses and hearing aids. She says that they never have to do catch up, because they don't fall behind. Although not about stem cells, this quote is false. CI=HAs with 80db HL

Exactly!!!! I gotta say.....I think that hair cell regeneneration is going to be benificial for people who fit a specific canidacy profile.....meaning late deafened people....It may benifit some people who were dhh as kids (eg postlingal or kids who lost their hearing around one or two) Funny because CI works great for most prelingual people! I expect much better with stem cells!

Key words: "have the potential." You seem to consistently read this as "can right now." I can get stem cells right now to treat my deafness.

Au revoir! Have fun with rehabs and therapies! (And quite possibly trips to the mental ward if you can't handle the sensory inputs from the new stereocilia.) Being able to hear with HAs, CI or stem cells does not cause insanity!

I don't believe the stem cell would cure for deafness. It will not work for profound deaf. You are wrong!

Don't get too excited, or you'll end up in that big black abyss called depression because you've finally realized that stem cells for hearing is just not going to happen for a long time, and you don't want CIs ever. Ironically, this culturally Deaf person is very pro CI and has a CI herself, yet she's against stem cells for deafness. Stem cells is "happening" now!

Yep, there's stem cell hype as The Next Best Thing Since Sliced Bread(TM). Realistically, it's a ways off. It'll get here when it gets here. And when it gets here, then we'll really understand where it'll be of value. Til then, enjoy life. Stem cells is the end all and it's here!

No offense to those of you who are all about the stem cell idea and even hopeful of being a candidate for this.... but seriously, why get your hopes up NOW when it may not even happen for who knows how long? So many stem cell naysayers! I knew it would happen soon!


Questions that I am answering:

1. Q: Ok. Why is it ok for a cure for blindness but not for deafness? Sounds very elitist and selfish to me.
A: Agreed! Everyone has the right to choose to see and hear. Why would I want a more difficult life if technology is there to correct our disabilities?

2. Q: So what's the difference between the CI company hype and the stem cell company hype? What makes stem cell hype more "legit" then CI hype?
A: Because stem cells will give the best hearing, way better than CI for less cost and risk.

3. Q: Sure after that, HAs and CIs will soon become a niche. the quastion is "when?".
A: This is why I am going to wait 3-5 years more. Stem cells is based on science, not magic! CIs will be old news almost overnight. HAs will continue to be widely used because those with mild losses won't be candidates for stem cells and most with moderate losses already hear great with HAs and aren't going to spend the money for 10db improvement. It's those with severe-profound losses like me who could improve down to a moderate loss.(note that this answer to him is already outdated!)

4. Q: Why is 20 db with 10% comprhension better than 30 db with greater than 80%???
A: Something would be very wrong if you heard at 20db and understood almost no speech. I heard way more than 10% speech and I never had 20db hearing in the speech frequencies. If I had enough residual hearing to get to 20db with HAs, id be looking at around 80% speech and being able to hear more sounds. This is why im getting stem cells!

5. Q: Anyway, anyone who want to have stem cells to cure deafness can dream on and will not happen for a very long time or will never have stem cells. Just get use to being deaf for the rest of your life. There is nothing wrong with being deaf. Okay?
A: That is your choice to stay deaf and I respect this. Please respect our choice to be hearing. There is nothing wrong with being hearing!

6. Q: It might be okay for late deafend but not for the deaf who was born that way. Why can we just have our body the way we have always been natural as we are born this way? If the late deafend want to hear again and take the risk to have stem cells, then that is their decision.
A: Please let every deaf/Deaf person decide for themselves if they want stem cells to improve their hearing. I am using my own adult stem cells to improve my hearing 100% naturally because they are from my own body and will be a part of me!

7. Q: Nobody is saying that anything is wrong with being deaf. However, some of us have a desire to change things for ourselves. Each of us are entitled to feel the way we do. Same as for all the people who get CI's - they wanted to improve things for themselves and I'm glad for them. Why should we have to "just get used to being deaf for the rest of your life" if we choose not to?
A: Exactly!

8. Q: when you get stem cells, there is no way to reverse it right? There is no way to turn them off at will. With new implantees, if things get overwhelming, they can turn them off then try again-- or ask to have them removed. They take them off at night as well. With stem cells, you can't do that. It's on 24/7, and no chance to escape from overwhelming new environmental sounds; at least with CIs, you can escape from them.
A: Stem cells can be reversable with ototoxins that destroy your hearing, but why anyone would want to do that is beyond me. If you are happy being deaf, don't get stem cells in the first place! On another note, you can choose how much improvement you want with stem cells as dosage can be adjusted to correspond with 10, 20, 30, db improvements. You can always get additional stem cell treatments for additional improvement in hearing. Someone with 100db HL could ask to be improved to 70db HL(which is better than CI already) and will be able to remove HAs for silence.

9. Q: Why are so many people against stem cells for deafness?
A: This is a question I sometimes ask myself. I have noticed that almost everyone who is against this are involved in Deaf culture. Those culturally Deaf would get stem cells for blindness, however!

10. Q: Will stem cells become accepted in due time like CI is today?
A: Quite likley. We have seen how CI slowly gained acceptance.

11. Q: How do you know that these new hair cells will function as "normal" hearing cells do? What if they are as damaged or broken as the ones you were born with? What if they work for awhile and then die off? We don`t know what will happen, because there has been no testing and no follow up.
A: The new hair cells actually aren't as good as "normal" but they are certainly better than no hair cells. I am missing all my OHC and some of my IHC in the lows and nearly all my IHC in the mids and highs. The pioneers are going ahead today with stem cells. We will have plenty of follow up news on their progress of stem cells. Update: Chloe's stem cell results proves this. She hears at 90% of normal and doesn't need HAs. Stem cells might not stop a progressive hearing loss if it's based on defective genes, for that youll need a genetic cure. Stem cells however does improve your hearing and can be a great stopgap while waiting for a genetic cure. I am still getting stem cells even if my deafness is linked to defective genes. I will still hear better and my hearing loss is stable.

12. Q: Plus, Deafdude, why do you think your brain will be able to handle this, new, sudden hearing? You have been profoundly deaf since birth, your brain has never heard these things. I think that would make you a very bad candidate!
A: I find it ironic you think ill do better with CI, yet you think stem cells won't work for me. CI has worked for many who were born deaf, stem cells won't be any different as far as the brain getting used to the new sounds. Besides I heard most sounds and some speech as I was fitted at 4 months old with the best analog HAs with the gains maxed out. I still had some high frequency hearing as well. I have prior auditory memory of most sounds and some speech. I give it a few months before I adjust to the new sounds.

13. Q: Then why he always obsessed with Stem Cell???? Nobody are interest to get stem cell to cure for deafness.
A: There is nothing wrong with wanting to hear better! You got a CI yourself(you also used to be against CI!) so I find it ironic you can't accept other's choices to hear better! You weren't happy with your own deafness and looked to a fix with CI! I am not happy with my deafness so I am getting a stem cell fix!

14. Q: The same question can be asked...why are some people obessed with CIs? Some people are just interested in Stem Cells, some are interested in CIs and some arent interested in hearing at all.
A: Agreed! Life is all about choices!

15. Q: What do your family and friends think of your stem cell choice?
A: My family and friends(all hearing) fully support stem cells for me and if they lost their hearing, they would get stem cells themselves asap to give at least some of the hearing back that they lost. Right now, most culturally Deaf are against stem cells. Itll take time for them to accept stem cells just like it did for CI. Many of the Deaf who were against CI are no longer against CI or they are even pro CI. Some of them have gotten CI themselves.

16. Q: How about stem cell to cure for deafness to make against deaf culture?? That is same as deaf culture's against CI. I rather be deaf with CI period!
A: Funny, because you were against CI but now you have CI! Once stem cells becomes accepted, some culturally Deaf will be getting stem cells just as they were getting CI after CI started becomming accepted.

17. Q: DD, Why is it better to have a 100db loss in the highs (which you claim is possible) than to be able to hear at 30db across all frequencies? I don't see how that is an improvement...
A: I used to have 100db loss on my 1998 audiogram and was hearing at 35db with HAs! Todays HAs with 70db gain can aid a 100db HL down to 30db! I also have the option of transposition.

18. Q: If having heard and then lost hearing and not hearing for 40 years before trying stem cell, will the brain be able to pick up where it left off?
A: Powerful HAs can keep the brain stimulated to sounds. It’s not the same as someone stone deaf who can’t hear a single sound with HAs. I hear plenty with HAs so I am not too worried about how ill do with stem cells. Most prelingually deaf who got *some* benefit with HAs do well with CI. Itll be even better with stem cells!

19. Q: Will I have to trade my Deaf friends for a new set of hearing friends?
A: The Deaf friends who accept your choice for stem cells(or CI) will continue to be your friends. Those who can't accept the fact you hear better will move on, it's their loss not yours!

20. Q: Some here seem to think, normal hearing could come as a mishmash of unintelligible noises just as with hearing aids cranked up to full volume. It sounds that way to Deaf people with a limited range of frequencies available to them. Will it still sound that way without amplification and with a full range of frequencies?
A: If you never heard a sound in your life, not even with HAs then this is possible that you won't do well. If you got some benefit from HAs at one point in your life, you will do quite well. I was severe-profound deaf and had HAs cranked to the max. I did not get normal hearing thru HAs but I heard lots of environmental sounds and a limited amount of speech. When I got new HAs, my brain was able to adjust and I heard all kinds of new sounds and my speech understanding improved. It's the same for those getting new HAs, CI or stem cells.

21. Q: I am deaf and would like improved hearing but not 24/7 hearing. I need my sleep! What are my options?
A: You can opt for a partial correction by getting a lower dose of stem cells. The other option is earplugs. Your brain will soon get used to hearing 24/7 and you won't be so bothered by every little sound.

22. Q: Why wait for stem cells to hear when you can hear quicker with CI?
A: Because stem cells is available today. By the time you wait to be approved for CI, several months will have passed. I am getting stem cells in several months!

23. Q: How can you possibly know what the cost is going to be for something that is still in development?
A: Because ive seen price quotes and also asked around. The estimate is $30,000.

24. Q: I can understand that you would rather hear without having a device on your head. Good luck with the stem cells, what other reasons do you have?
A: Ive mentioned my reasons for choosing stem cells over CI numerous times in my blog. Thanks for respecting my choice!

25. Q: What about those who might have ossification with their inner ears? how would stem cells help?
A: Might have to wait till technology can regrow a healthy cochlea from stem cells. I did read they are working on auditory nerve implants as a stop-gap measure.

26. Q: How would adjusting to stem cells differ from CI?
A: Stem cells very likley will give better quality of hearing so there's less interpretation/filling-in-blanks for the brain to do. The signal will be new indeed but better with stem cells. The sound would also be more natural. Adjustment may be rapid, especially for late deafened.

27. Q: Why would you NOT want a CI? If you want to hear and understand spoken language, why would you wait and hope when clearly there is a tool that works RIGHT NOW!
A: I get asked this alot. It should be clear by now that stem cells are better, cheaper, safer and available now! I even have a thread of the advantages of stem cells over CI. I see no reason to get a CI at this point. I didn't know much about CI till 2008 and by then, there was news about hair cell regeneration. The articles and "experts" said it would take 30+ years for "deaf cure" to be available, but I knew this was wrong! Those who weren't against stem cells were saying the wait would be only 5 years, those who were against stem cells said the wait would be 50 years! I knew who to believe at this point!

28. Q: How long are you going to wait for stem cells or some other method to treat/cure your deafness?
A: I discussed this with my dad and agreed I need to wait several more months for more pioneers to get stem cells and for us to learn about their results.

29. Q: How much can stem cells improve my hearing?
A: This is something even I don't know in full yet. I only have one audiogram of anyone who got stem cells. From emails to stem cell labs, some said the improvement was quite small/insignificent, others said it was in the 20-30db range and still other labs said the improvement was huge and some of the patients were able to hear a good deal without HAs! Chloe is one such example! Animal studies showed similar results. So the conclusion is to have realistic expectations of a 20 or 30db improvement if you have a severe-profound HL and a smaller improvement if your HL is only moderate.

30. Q: Can I get stem cells again for additional improvements?
A: Of course. Very little is known about how much additional improvements you could achieve. It might make sense to wait a couple years for technology to advance before getting stem cells a second time for a better chance of a bigger improvement.

31. Q: I already have a CI, what are my options?
A: You could benefit from stem cells in your virgin ear. The CI ear may have to wait decades and may require growing a new, healthy cochlea using your own adult stem cells. The damaged cochlea will be removed and the healthy cochlea transplanted and stem cells used to connect the nerves to the cochlea and to grow hair cells. I know many people who lost interest in CI and are saving both of their ears for stem cells.

32. Q: I can't afford stem cells, but insurance will pay for my CI, what should I do?
A: The first CI may be "free" but insurance rarely pays for a 2nd CI so itll cost you $50,000+ if you want to hear with two ears. Stem cells can treat both ears for half the cost of one CI. I have been saving my cash for stem cells. There's many ways to save money and stay out of debt.

33. Q: Why are you so against CI?
A: I get that question alot. I am not against CI, but know at this point CI does not make sense. Those who are against stem cells will choose CI and don't care about ever getting stem cells. CI has been great for most people, now it's stem cell's turn to be great for the rest of us. Hearing parents will be choosing stem cells for their deaf babies, late deafened adults will choose stem cells. Most people will be choosing stem cells in fact for all it's advantages over CI. The CI debate will end.

34. Q: Hypothetically, if someone like me with a fluctuating and progressive hearing loss got stem cells (and they work optimally) would their hearing not just continue to get worse after receiving stem cells?
A: If your HL is genetic, stem cells won't change anything except improve your hearing. If you get a 30db improvement with stem cells and you lose 10db per year, after 3 years youll be back to baseline. Stem cells would be a stop-gap measure till you get a genetic cure in the next several years. I would still get stem cells for myself if my loss was progressive. Id be able to get stem cells many times then get a genetic cure for the same cost of bilateral CI.

35. Q: Would these not also die off as you get older? Are the stem cell treatment continuous, or a one-time deal?
A: Stem cells can be repeated as many times as you want as long as you can afford the cost each time.

36. Q: Has Chloe's hearing still remained the same since she had stem cells? Do you think she'd need some more?
A: If her hearing loss was stable before stem cells, it will be stable after stem cells. My HL is stable so I expect it to be stable and last a long time.

37. Q: Do you think Deaf people and children will be forced to have stem cells or do you also think CI's and HA's will still be available for those who are not interested in stem cells?
A: CIs will be history or a tiny niche market. Insurance will stop paying for CI once stem cells becomes widespread. HAs will still be around for those with mild to severe hearing losses who can't afford stem cells. Those who are profoundly deaf have the choice of a partial or full correction with stem cells or simply live without sounds.

38. Q: Regarding mild HL and stem cells, do you mean for insurance purposes, or in general?
A: Insurance probably won't pay for stem cells except those with severe-profound losses and not till 10-15 years from now when FDA approves stem cells. I am not waiting this long and no guarantee insurance will even pay at all. No reputable stem cell center will attempt to treat a mild hearing loss or someone who can still hear well without HAs. Stem cells aren't likley to give more than a few db, if any of improvement.

39. Q: If some legends of music with mild to moderate loss (Phil Collins, Sting, Pete Townshend, etc.) began to benefit from stem cell treatments, it could help advance public interest and thus generate more research and investment in the refinement of them. What do you think?
A: Stem cells should benefit a moderate loss(40-70db) and take that loss down to 30db, 25db, maybe even 20db after several rounds of treatment. This won't be cheap! Far, far, far cheaper to buy HAs online and get down to way better than 20db aided. This is why I don't see HAs going away for 30-50 years till stem cells or some other technology becomes so refined and cheap.

40. Q: Why are there no reports of human clinical trials in any major University or research lab?
A: Because stem cells aren't allowed/available for several years in America.

41. Q: If stem cells really restored hearing in someone like Chloe, wouldn't this be front page news in a major paper?
A: It is front page news on the internet which reaches a much larger audience and saves on paper.

42. Q: Will they cause other things to "reset" as well? For example, I have had my wisdom teeth removed. Will I start growing new wisdom teeth to replace the "lost" ones when I'm treated with my own stem cells.
A: Stem cells currently can't regrow anything, just repair existing damaged cells. For this reason, you need a healthy cochlea(sorry CI wearers) and auditory nerve and no inner ear infections to benefit from stem cells.

43. Q: But everyone keeps saying that a practical stem cell cure has not be proven, and isn't just around the corner. Are they just covering their rear ends?
A: If they are against stem cells, you have your answer right there.

44. Q: How do I know which companies involved are fraudulent?
A: Do your research, read other blogs of people getting stem cells, ask around.

45. Q: Thirty to seventy grand is a lot of dough, DeafDude. How can people afford it?
A: I can tell you now that $70,000 for hearing loss is a ripoff. Chloe got treated for $30,000 plus travel costs.

46. Q: What will you do if stem cells doesn't work for you?
A: Unlike CI, I only lose the money but retain my residual hearing. Ill be able to keep wearing HAs. Itll be a bummer if I don't get an improvement but oh well, there's no guarantees in life.

47. Q: What is the fate of CI and the companies that make them now that stem cells are available?
A: CI will fade into obsolence(it already has begun) and won't be around once America FDA approves stem cells. Today, many people are deciding(saving their ears) not to get CI after all(CI=can't get stem cells for 20+ years) and are waiting for the stem cell pioneers to go then they are going ahead next. There will be a class action lawsuit for those with bad CI results and those who were getting benefit from HAs but were forced/tricked into CI. The insurance companies are going to want their money back, they will sue as well! The CI companies will go bust within a decade. CI has served it's purpose in the past but time moves on.

48. Q: I heard about the totally implantable CI, isn't that like a cure?
A: CI is never a cure, just a tool to give you access to sounds similar to a HA. Besides the totally implantable CI gives poor speech comphrension and faint, muffled sounds because the speech processor is blocked by layers of tissue. Itll be at least 5 years, if ever before the totally implantable CI becomes available and only a tiny fraction will be interested and that's only those who are against stem cells and can find insurance still willing to pay for CI at this point in time.

49. Q: I got a CI a couple years ago, are you saying there won't be any more support?
A: There will be support for mapping and repairs of the external speech processor for at least another decade because so many have CI right now. If your internal CI stops working years from now, you are gonna have to wait till technology is capable of regrowing you a new cochlea. If you have saved your other ear, youll be able to benefit from stem cells in the virgin ear.

50. Q: How come you didn't take opportunity to learn ASL to be fluent in it?
A: I was given that choice(but was never forced) to learn ASL. I chose to read lips and practice speaking clearly and be 100% oral. None of my hearing friends/family signs and I have never been involved in Deaf culture. I am getting stem cells to better fit in the hearing world.

update(Nov 22) HLAA stem cells with Dr. Cotanche

I can tell you right now that stem cells is available today in many countries. He is predicting a 20+ year timeframe, I doubt even America will fall this far behind because there's billions to be made. I give it 3 years before we see human clinical trials in America and 7 years before stem cell clinics in America start treating hearing loss/deafness. There will have been many thousands(including me and my friends) who will travel to other countries to get stem cells by then. Technology is so much more advanced elsewhere and costs are much lower as well.

If you ask the doctors in America about stem cells, they will either deny it or give a 20+ year timeframe. This goes for blindness, cancer, diabetes, MS, injuries, etc besides deafness. They and their western medicine can't help you. Thousands have already traveled to treat their conditions other than deafness. There's numerous blogs and testimonals to the success of stem cells for their conditions. I can tell you right now that if anyone in my family developed a condition or illness, we will travel and get treated with stem cells. Itll be several more years before stem cells becomes available in America to treat people.

Furthermore, I have been in contact with stem cell labs, including the one that treated Chloe. She got 600 million stem cells at a cost of $30k plus $7500 to remove her fat cells from abdomen plus travel costs to get the stem cells. However this is less than half the cost of bilateral CIs so stem cells for this reason, among many other reasons are a great deal! I also learned from that stem cell lab that autononomus(using your own adult SC) in a large dose is what produces real results for deafness and all other conditions. The smaller improvements attained from umbilical cord blood stem cells was due to different type of stem cells as well as lower dosages. I also learned that stem cells are 100% successful, just that the amount of improvement is different for each person. You can always return for repeat stem cell treatments!

As long as you have a healthy cochlea and auditory nerve, stem cells will replace the missing hair cells and auditory neurons and improve your hearing. If stem cells won't work for you, a CI won't work for you either, anyway. Stem cells will eventually(20+ years) be able to regrow a badly damaged cochlea(for those who have CI, ossification or disease) as well as regrow a badly damaged or missing auditory nerve. There is no reason stem cells won't work for me, however I have realistic expectations and don't expect to be fully hearing after stem cells.

Thanks for reading. Feel free to leave a comment or ask a question and ill put it up with an answer. You may also agree or disagree with any of my above answers and quotes.

68 comments:

  1. Okay, so I'm trying to be open-minded about this and not get into an entire debate. People pretty much never change their opinions anyway, so I'm not going to try to persuade you since your mind is already made up about stem cells vs. CIs (and for the most part, so is mine!) But I have a question...

    Hypothetically, if someone like me with a fluctuating and progressive hearing loss got stem cells (and they work optimally) would their hearing not just continue to get worse after receiving stem cells? I still haven't been able to find the answer to this and it is a HUGE factor in how well stem cells work and are accepted. Would these not also die off as you get older? Are the stem cell treatment continuous, or a one-time deal? I have no clue how it works..

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  2. Has Chloe's hearing still remained the same since she had stem cells? Do you think she'd need some more?
    I disagree with what you said about people choosing stem cells over CI's. It just I don't think that will happen since some Deaf people will be that involved in deaf culture and won't want to change who they are, they would be happy enough being Deaf. Only time will tell.
    Do you think Deaf people and children will be forced to have stem cells or do you also think CI's and HA's will still be available for those who are not interested in stem cells?

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  3. I want more success stories than just Chloe. Let's spread the word like wildfire and soon the research will speed up to offer deaf cures all over the world! (and progressively cheaper too :)

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  4. Your questions have been answered in my edited post. Keep them comming! I will spread the word, Marty!

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  5. Is Chloe real? Have you emailed her or her parents??

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  6. I think it would be helpful if you posted the sites and articles that form the basis of your views, not just press release from companies that are trying to market their services or secure financing so that everybody can get rich on stock options. Most of the material I've read on the Internet -- by doctors who have spent a great deal of time doing research in the field of stem cell therapy for deafness -- do indeed caution that many more years of work is needed.

    On the one hand, you have a huge emotional investment in stem cell treatment being successfl, and on the other, no medical training. Simply shouting that STEM CELLS ARE A REALITY TODAY or USING YOUR OWN STEM CELLS IS RISK FREE is not debate; it's immature. I also feel it's irresponsible of you to dispense medical advice when you are not a doctor and have no deep understanding of the risks involved.

    Yes, it's wonderful that Chloe was helped. Fantastic! Who can deny that the therapy helped her (though the whole story could a fake). But she is just one person among millions, or even hundreds of millions, who have hearing loss. Let's see some more results and evidence. Why do you put down people who have a healthy dose of skepticism? Your resistance to them takes us right back to the Middle Ages -- with you playing the role of some kind of overzealous religious leader who doesn't realize his own stake in his beliefs.

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  7. you think it is a false story? Parents and doctors are actors actress daughter? Does the company there is not publicly traded? Do you think that not being applied on humans? Do you think that does not apply if not in USA as close? Please inform us if you want, anonymously.

    ReplyDelete
  8. I saw a hell raider here, like that in RNID. He or she will spill doom , take out the good poster , hypernate and feast on them. Get your butt out of here, you dam ned pessimist. Stay in your hole and rot.

    ReplyDelete
  9. I'd be interested to know if stem cell treatment can be permanent for someone with a stable hearing loss. I wouldn't like to keep going back to the dr's for maintenance, that kind of cost over a lifetime can be considerable.

    So far, I don't see anything in stem cell research or actual treatments overseas verifying the permanency of such treatment. Any sources to verify this aspect of stem cell treatment?

    Ann_C

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  10. @Anonymous,

    No, I don't really think the story is a fake, but I do think that it is likely that information has been left out that may influence the way we see the treatment. How many patients received similar treatments? What was the success rate? What if one hundred received treatment and Chloe was the only patient with a significant improvement in hearing? Don't you see that that would have an effect on whether we should see this as a miracle? Furthermore, did any of the other patients suffer side-effects? Did their hearing worsen? What if Chloe's hearing declines again? Will we hear about that?

    You must be very naive to think that just because a country is publicly traded in the US it makes them honest and is a guarantee that they are telling the truth.

    All I want is more scientific evidence, from a neutral source, not a press release. Just think: if any deaf person can walk right in and get improved hearing, miraculously, why haven't many, many more done it and reported on it?

    I think it is naive to believe in a wonder treatment.

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  11. Many are now banging on their doors. Sorry to say that, but you belong to that naysayers group. You will not admit it, but you are.

    Just remember not to seek stem cell treatment next year, have some integrity by walking the talk.

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  12. @Tom

    I don't know if you're referring to me, but just to clarify: I am not a naysayer. If the treatment is successful and safe, I will undergo it myself.

    But surely it is not asking too much to see information from independent sources?

    Is this about medical science or a new religion?

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  13. If you ask many experienced physicians, they will tell you that no one really knows exactly how medicine heals the body. There are a lot of unknown unknown. When you see doctor for a minor ailment, you can die hours later despite taking the best medicine. On the other hand, dying patients who are not prescribed medicines because they are 'beyond hope' have healed completely. You tell me what is at work here.

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  14. Higher up is saying the time to hear is now

    ReplyDelete
  15. HEARING LOSS – A BRIEF HISTORY
    http://repairstemcell.wordpress.com/2009/11/16/hearing-loss-%e2%80%93-a-brief-history/

    ReplyDelete
  16. Thanks for the link.

    ReplyDelete
  17. You got me here! I have really appreciated your information and participation not just for me but on other's threads I have encountered along the way. You have obviously been dealing with all of this for a long time and are quite well informed about a great deal of deaf/hearing information. So, thanks!
    I truly hope the stem cell path becomes a viable option for you (and, of course, everybody else who might want to go this route!) I find the potential that stem cells offer is vast, amazing and could dramatically alter how humans deal with their diseases, abnormalities and even injuries. Utilizing stem cells derived from tummy fat to restore hearing loss is plainly wild; the stuff of science fiction yet we are seeing these things happen today. My only cautionary note, following a lifetime of serial disappointments in many regards, is that your enthusiasm and reliance on Chloe's success as an indicator of future success sometimes sounds overly optimistic. Mind you, I hope it works and completely support your efforts in this regard. I just worry that should the process not work out, your disappointment might be as deep as your hopes are high. I know a bit too well that depression (much like hearing aids) is not all it is cracked up to be.
    So, now, go out and prove me a Scrooge, get those sounds back, and we will one day talk on the phone! OK?

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  18. for those who plan to go to Live Webchat Schedule Topic: "Development and regeneration of hair cells - the latest news in research". Asking questions about stem cells and treatment of hearing loss!
    Topic: "Development and regeneration of hair cells – the latest news in research"

    Guest Speaker: Dr. Douglas A. Cotanche

    Date & Time: November 19, 2009 at 9 PM ( EST )

    Hearing Loss Association of America
    http://www.hearingloss.org/Community/schedule.asp

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  19. Hello Deaf Dude,
    I've been following your blog for about two months. I'm relatively young (early 30s) and a bit HOH, with more hearing loss in my left (45 DB loss) ear than right (35 DB loss). It's particularly bad in the 2000-6000 hertz range, which makes it difficult to understand people speaking even if I can hear them "OK". My hearing loss was most likely caused by a lifetime of cumulative acoustical trauma (10 years of school marching band, working around loud machinery, operating leaf blowers, chainsaws and lawnmowers, rock concerts and night clubs when I was younger) and some effects of ototoxicity from (legal) painkillers I've taken for a lifetime of chronic migraine headaches. My doctor has also not ruled out labyrinthitis. In addition, I now have intermittant tinnitus (ringing) and hyperacusis, which is very irritating.

    I'm hoping that stem cells will give me back the hearing I've lost, maybe within the next 5-10 years. If current hearing theories are right, repairing my stereocilia will also cure my tinnitus and hyperacusis.

    First, let me say that I think that the stem cell nay-sayers don't have a leg to stand on; the evidence seems good that stem cells will one day cure many types of hearing loss (obviously not all--if you have malformed or absent cochleas or acoustical nerve issues it won't be a cure). Certainly, if your problem is with damaged or absent stereocilia (like me), the potential is there. I see blindness as the next frontier after deafness for a stem-cell cure.

    However, I think caution should be excercised at this point. I wouldn't use every anecdotal story as proof that a stem cell cure for hearing loss is an established treatment (though they certainly aare interesting). While I wouldn't wait for the ponderous FDA to approve it, it would be good to see these studies written up in a peer-reviewed medical journal before getting your hopes up too high. There are all sorts of unscrupulous people out there who know how to play on people's aspirations (or desparation). For my part, I hope you're right and stem-cell treatments for HL are right around the corner!

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  20. I am a Yes-sayer.

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  21. As far as I can see that has not been a single study of stem cells used to treat human beings with hearing loss. There have only been reports by a few individuals who have undergone such treatments. Please correct me if I am wrong and point us to the website.

    I have only found studies on related topics that are preliminary in nature.

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  22. Miguel:
    Re: "Repair Stem Cells...."

    This is just an unsubstantiated claim on someone's site on the Internet. There is NO information whatsoever on what these treatments enter or where they will be available. It seems like a ploy to sign up for whatever service the website operator is selling.

    Here are some remarks by Dr. Cotanche in that interview you announced:

    Lin from Texas: I read about research on hair cell regeneration a number of years ago, and am
    excited to learn about your Webchat on its progress. You will probably answer this question without being asked, but I am asking just to be sure. When do you think these procedures are likely to be available for those of us with profound hearing losses who are no longer able to use hearing aids?
    Thank you for your continuing with this research, and for your response.

    Dr._Cotanche
    Hi Lin, Thanks for your interest in our work and for following over the years. 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. I would project that a potential therapy will not be available for at least 20 years.

    ...

    Debbie from Colorado: There has been an individual promoting this YouTube video on hair cell regeneration as being proof that it is happening now. Is this true?
    http://www.youtube.com/watch?v=i_jqPbTc0Ug Where should we go for credible updates on hair cell regeneration?

    Dr._Cotanche
    Hi Debbie, Thank you for pointing out this video. I am very suspicious of this testimony because they give no details of what therapy they are talking about. And when I go to the company website there is no information on this case or for using stem cells to treat hearing loss. I would be very cautious about
    believing that testimonial, even if both her parents are MDs. They need to provide more scientific data and show it happens more than once to demonstrate that the therapy she got was actually responsible for her recovery of her hearing. There may have been other things going on or other therapies she got that contributed to the recovery.

    /////////

    Just to remind you: I am not a naysayer, just a truth-seeker!

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  23. "Dr Marcelo Rivolta, Senior Research Fellow at the University of Sheffield, tells us how his research could make hearing aids and cochlear implants a thing of the past".
    source: http://www.rnidimpact.org.uk/curingdeafness.html

    ReplyDelete
  24. Thanks everyone for your comments. I will be adding more questions and updates to my blog. D1rock and others, when do you plan to get stem cells? I set the date sometime in 2011, subject to change depending on the progress of stem cells. Keep asking questions and ill add them to my blog.

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  25. 2011 sounds great...and optimistic! I hope you are right, DD. For me, I can just barely afford the current inexpensive HAs I am using. I also think Dr. Cotanche has it right; when more peer reviewed articles and studies show successful results, I'll believe successful claims a bit more readily. However, if you, Deafdude, were to come back here in 2012 and say to us that your treatment was successful, I would not require a longitudinal, peer reviewed research study to believe it. I'd be all over that info and ready to find some money somehow!

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  26. Yo Deafdude,

    I've been fascinated by this topic lately, and have enjoyed reading your (quite exuberant) posts across some of the larger hearing-loss communities out there on the web. Cool to see you have a blog as well!

    Was just wondering if you might expound a bit further on this statement:

    "HAs will continue to be widely used because those with mild losses won't be candidates for stem cells"

    Do you mean for insurance purposes, or in general? If the latter, why's that? A limited (predicted) efficacy at that level, or something else entirely?

    Personally, I have a very mild loss (which would be categorized as normal by most standards) of 20-30 dB at the low frequencies, no loss at all (0 dB) from 2-4 kHz, and then a slope starting at 6 kHz, most likely from premature presbycusis due to years of unchecked hypertension and atherosclerosis. I could hear some dog whistles in middle school; ten years later, I can barely hear 12 kHz at 100+ dB. Don't get me wrong, I mean in no way to compare my situation to yours, but as a musician, it would be great to regain the ability to hear bass at normal volumes, and not lose the ability to discern instruments as intensity increases. Indeed, I think that if some legends of music with mild to moderate loss (Phil Collins, Sting, Pete Townshend, etc.) began to benefit from stem cell treatments, it could help advance public interest and thus generate more research and investment in the refinement of them. What do you think?

    Again, awesome blog. I'll be following it and look forward to sticking with it for at least the next few years. I believe this will be the century of regenerative medicine, and hearing's where it starts.

    Peace!

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  27. It's good to see anecdotal evidence of stem cells working on hearing loss, but why are there no reports of human clinical trials in any major University or research lab? Nothing in the New England Journal of Medicine or Lancet or what have you. If stem cells really restored hearing in someone like Chloe, wouldn't this be front page news in a major paper (or at least second page news)?

    Also, I have some other concerns about stem cells...if they can cause your inner ear hairs to grow back, will they cause other things to "reset" as well? For example, I have had my wisdom teeth removed. Will I start growing new wisdom teeth to replace the "lost" ones when I'm treated with my own stem cells. How do they tell stem cells: "Regrow these things, but not these things, and when you're done, stop growing"? I'm not trying to ask flippant or sarcastic questions here, just looking for answers.

    I'm trying to stay open minded about a stem cell cure for hearing problems being imminent but everyone keeps saying that a practical stem cell cure has not be proven, and isn't just around the corner. Are they just covering their rear ends?

    There's also an American company that has a drug in preclinical trials that they hope can be a hearing restoration treatment (SPI-5557). If so, there may be a purely pharmacological solution for sensorineural hearing loss: http://www.soundpharmaceuticals.com/index.html

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  28. The more I read about the stem cell injection treatment you're discussing here, the more I have come to believe that many of the companies involved are fraudulent. For an interesting article about one such company and how it preys on people like yourself, read the following article:

    http://www.latimes.com/news/nationworld/nation/la-sci-stemcells20feb20,1,1036275.story

    You can also google "stem cell injection" "fraud" and "FBI."

    You're apparently reaching a growing audience with your site and you need to take responsibility for any information you're posting. You're getting people's hopes up without asking the proper critical questions and making them easy victims for the con artists.

    Thirty to seventy grand is a lot of dough, DeafDude. Make sure you're not handing it over to crooks. The reason why people like Dr. Cotanche are skeptical of the so-called successes is that they have a much more profound understanding of the problems involved than laypeople like yourself.

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  29. I am just bored by all these naysayers.

    Let's compare clinical trials with boutique clinics. I do not remember there are any clinical trial for botox treatment ?

    1 reason the mainstream scientists are so slow is because they are getting public funding and they need to come out with a mass market product, get it ? Which means it must be efficient and at low costs.

    If there are fraud, it will be exposed. That is why I do not and would not recommend like-minded savvy people to go for the treatment now. Let the dust settled down first and then go. There will always be the daredevils among us.

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  30. Hello. My hearing loss is in the 30-40 db range. It's mostly caused by noise exposure. This makes it difficult for me to parse the high-pitched vowels of speech, especially in women's speech...so I can understand people all right in one-on-one situations and/or if I lip read, but it's difficult for me at other times. I've looked at getting a HA and was astounded how expensive they are ($500-$2000, and how often their batteries need replaced... and their short lifespan (3 years??).

    What would stem cells do for me? Could they get me down to 10-20 db threshold level?

    I agree with the suggestion that celebrities (esp. musicians) with hearing problems with be the best spokespeople for the new treatments. The Who's Pete Townsend has very poor hearing now. He'd be a good candidate for this I think. Same would go from Ryan Adams, Brian Wilson and Danny Elfman.

    In your opinion, when do you think stem cell treaments for hearing loss with become commonplace and affordable?

    ReplyDelete
  31. Thanks for your comment on our blog about Chloe Sohl, and for your request for contact. We have lots of great contacts for stem cell treatments in Asia. Please contact us for more information at info@patientswithoutborders.us and our Patient Advocate who can help with stem cell treatments will get back to you very quickly.

    Thanks again!

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  32. This comment has been removed by the author.

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  33. I was reading another blog and those are some of the comments:

    1. A woman in Japan has had hearing restored and they are trying the therapy on a 4 year old deaf girl now. We will ask SEE HEAR to get a panel of deafies in and see how they view that ? Opponents are going to find no ground to stand on, as this stem cell therapy poses no dangers they claim CI's do, and via the treatment they are 'curing' themselves.......

    2. Even when stem therapy really takes off, it won't be a cure for all.

    Some types of deafness will remain untreatable...still I wish for all deaf to be cured..I really do.

    Deaf can then enjoy music, better job prospects and overall a bloody better quality of life!!

    There's no argument with stemcells,..except some god idealogy that we should accept who we are and not try and change ourselves.

    This is a natural cure..a cure that most of us have been waiting for. CIs will be defunct..finished..no competition with cell therapy.

    3. Do you think ? lol
    I just cant wait Im so impatient you want me to get mine done first dont ya lol I prob will be before you you need to get a move on ha ha

    Yeah Andy good for you youve got nothing to lose and loads to gain hope it goes well !

    4. Most of us want to be cured..that's the bottomline.

    If we were to be hearing again, then I personally would be urging others here to look into it.

    There's too many positives with being hearing..anyone who likes being deafened and wishes to remain deaf is beyond me.

    5. from “RSCI Newsletter” of November 2009 I read an announcement about the impending hearing loss treatment with stem cells. He says that in January 2010 will begin treatment (USA??). And there will be more news in the next issue. Hopefully, I at least expect more information and news!
    That’s information

    “HEAR YE, HEAR YE! THE FUTURE IS HERE!

    Repair Stem Cells for a variety of hearing disorders will be available in the USA in January. Of all the treatments that RSCI recommends to patients; treatments for hearing disorders will be the least expensive. To find out more, email donmargolis@gmail.com with the word “HEARING” in the subject line. Please include your name and the country in which you currently reside in the message. Next issue will cover stem cells and hearing disorders”.

    desdeREAL PEOPLE – REAL NAMES – REAL IMPROVEMENT.

    Thanks for your comments guys. I have answered your questions. Keep the comming!

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  34. Hi Duke

    At times I am down and think about you and Miguel and some friends I made at RNID.

    We shall celebrate till we drop the day after our deafness is cured ok ?

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  35. hi

    Anybody has any update on the question relating to Chloe post on the Live Chat?

    See:
    http://kokonutpundits.blogspot.com/2009/11/stem-cells-for-hearing-loss-live-chat.html

    ReplyDelete
  36. @wongtanlim3

    The transcript is available online. Dr. Cotanche expects stem cell treatments for deafness to be available in about 20 years.

    He is suspicious of Chloe's story because very little information has been released about the treatment itself.

    For another note of caution, please read:

    http://dianrez.xanga.com/716406316/a-note-of-caution-on-stem-cell-treatment/?nextdate=last

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  37. We had the following questions in deciding whether our then 2.5YO Li-Li should get a second implant last year or wait:

    1. Surgery: would better, less invasive, Lasik-like methods be developed in the near future, eg, work currently being done on developing new methods at Vanderbilt? > CI Surgeon's answer: yes, but still requiring anesthesia and deep surgery, not significantly different from current methods.

    2. technology: would the big CI players be coming out with any new technology that we'd want to wait for > Cochlear Americas: working on something, but ETA and scope of changes unknown, possibly just external upgrade (hmmm, yes, but now I get to see the wonderful SMALLER Nucleus 5 that we missed by a year - push them for an update!); CI surgeon said that CI co's will always be focused on retrofitting new tech to previous models: recipients are their proof points and if we fail, they fail.

    3. hair cell regen: would getting surgery now preclude or limit later hair cell regen therapies? > CI Surgeon & hair cell regen researcher answered: no!

    4. hair cell regen: when will hair cell regen. be available and what are expected results? > last year, CI Surgeon & hair cell regen researcher answered: very hard to say, some ballpark figures that they wouldn't want to be held to: They expected nothing available for children in the US for at least another 5 years (that was in Summer '08). Results during first 5-10 years after that point (from 2013 - 2023), they expected we'd approximate results from early to current CIs, improving over time, but wouldn't see catch up to contemporary CIs until the 10-15 year point.

    5. Is the incremental improvement expected worth the downsides (surgery, potential to damage hair cells that might be accessed later) > What is likelihood that Li-Li will be in crowded, nosy, chaotic environments? HIGH

    I will answer your questions below:

    ReplyDelete
  38. Hi Dianrez, Melissa isn't interested in stem cells and I respect her choice. I am getting stem cells myself soon, however.

    Rachel, adult and cord blood stem cells do not cause tumors anywhere. Those stem cells have been used in over 10,000 patients worldwide with 0 tumors. Even Chloe got stem cells! Do stay away from embryonic stem cells, however!

    Elizabeth,

    1. I have been in contact with a few stem cell centers, including the one that treated Chloe. No surgery or lasers. Just an IV to arm. They can make a small incision and implant the cells directly in your cochlea but don't recommend this 2nd option.

    2. Any future CI technology does not interest me as I am getting stem cells soon. We have seen Chloe become hearing without HAs!

    3. The stem cell centers ive been in contact can't and won't consider anyone with CI a candidate for stem cells. Ive also learned that those with a CI may require regrowing a new cochlea(a 20+ year wait) Animal studies have shown that damage to the cochlea similar to what CI does causes stem cells to be unable to give any real improvement.

    4. The USA is years behind due to Bush and his anti-stem cell crowd. Other countries are offering stem cells today and dozens of people are getting it for hearing loss. I would only need to get to about 80db HL after stem cells to match today's CI. I should be able to hear at the 10-20db level with my HAs offering maximum amplification of about/around 70db in the speech frequencies.(80db HL with 70db gain=10db aided with HAs) Todays stem cells offer an average improvement of 20db per treatment and Nepsis can give me a treatment once a month. We have seen Chloe's amazing results. I have seen other results that were still as good or better than today's CI.

    5. The downside to CI is why I am choosing stem cells over CI. If stem cells don't work, the only thing I have to lose is several thousand dollars.

    Melissa is still choosing CI because she doesn't want to be hearing or be able to hear anything unaided. She's against stem cells but respects my choice for stem cells. Likewise, I respect her choice for CI.

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  39. This comment has been removed by the author.

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  40. Please let me have more info on Nepsis

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  41. Nepsis is closer to me and they charge less, but I also get less stem cells. Nepsis says that I would do better with cord blood SC than autologous SC because my HL isn't autoimmune. There's a 90% chance ill get some degree of improvement in my hearing.

    ReplyDelete
  42. What's the basis of the claim that your chances of improving your hearing are so high (90 percent)?

    Is that simply what they told you or have you seen independent studies or any kind of written document?

    What does treatment cost at Nepsis?

    ReplyDelete
  43. Ive read around and seen the results of other pioneers. They report a 62% chance of a significent improvement and almost 90% chance of any measurable improvement. The cost is normally $18,000 but if I decide to be a pioneer, my cost will be half that till Feb 2010.

    Greg's comment(moved here)

    Stem Cell therapy is really a good news. I have cousin who needs stem cell therapy and we continously flock the net to know what is latest so that we can guide him. I have also come across few remarkable companies that provide the support systems for such procedures.

    Rick's comment(moved here)

    I dont know much about stem cell hearing restoration. There may be some negative side effects or not able to benefit from it especially for older adults born deaf (pre-linguals). There are several more techniques to improve our hearing not just hair cells. Auditory nerve as well as neural plasticity. I do think NEGATIVE or CONS about having CI on me decades long after birth. At the same way I may say likewise to a stem cell based hearing restoration regardless of your current + statements on this site. Rick

    ReplyDelete
  44. http://twitter.com/danya01
    ¿beike or rnl bio?


    source: http://twitter.com/tinnitus

    ReplyDelete
  45. Tinnitus Support Group...
    http://www.dailystrength.org/c/Tinnitus/forum/8645354-video-girl-recieved/lastpage

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  46. This comment has been removed by the author.

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  47. Another rude comment from an anti stem cell person who can't respect our choice for stem cells. This person resorts to insults such as calling us a "retard" because we are interested in stem cells. I get lots of funny, false, negative, rude comments from the anti stem cell crowd, most of who are culturally Deaf.

    They get mad when I repost their comments anonymously on my blog and want to censor me. It's all right for you to insult me but not allright for me to defend myself and disagree with your rude comments? Sorry, but by posting a comment anywhere, you make it public for the world to read. I am not going to stoop to their level and be rude back, but I am leaving the rude comments up to show others that we aren't being respected for our choice and desire to hear better with stem cells.

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  48. Dear deaf dude,

    As much as I would encourage you to have hope and faith in stem cells, I haven't yet noticed on your website any discussion of auditory deprivation. I would encourage you to research this and it's long term and often irreversable effects on speech understanding. For many individuals, a CI is preferable if only to prevent cross-modal plasticity of the brain, and a lost ability to percieve sound regardless of the state of the cochlea.

    For the same reasons that a prelingually deafened child will not be able to learn language if implanted at > 6 years old, a profoundly deafened individual may struggle to process sound information from a newly regenerated cochlea after 20+ years of profound deafness. Like all things, hearing is a 'use it or lose it' ability. Animal reared in the dark for the first few years of their life will never see.

    No stem-cell treatment or hearing device can replace or regenerate the complex organsiation of the brain. Even if they are able to regenerate hair cells, it's no good if your auditory nerve and central auditory nervous system have degenerated beyond use from lack of stimulation.

    If you're managing effectively with HA's then stick with them. If your life and spirit is suffering even with optimally fitted aids try bimodal hearing (HA+CI) or if you're a candidate the new hybrid devices which make good use of any residual hearing you do have.

    Worst case long-term scenario with a successful implantation is that the auditory portions of your brain will remain healthy and intact so you will be able to make better use of stem-cell treatments when they do arrive.

    Alternatively, if you don't want to be reliant on a CI, learn sign-language and you won't be. Your auditory nervous system will remain stimulated, and you'll have another option for communication should you prefer not to use your CI a few days a week.

    Just remember, time waits for no man. Make the best decision you can today without fear and you won't have regrets.

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  49. Thanks for your long comment but you have some misconceptions.

    1. Only those against stem cells are still opting for a CI. I am choosing stem cells over CI and explain the reasons in an earlier post. Ive also explained and shown proof of stem cells treating people(including Chloe) today.

    2. You are forgetting that HAs benefit most deaf people, including me. Why in the world would we get CI when we get access to sounds and speech with HAs already? Our brains are being simulated by auditory information thru HAs!

    3. I am aware that stem cells isn't guaranteed to make me fully hearing. I am just looking for a significent improvement(above and beyond CI) with stem cells. Ive explained previously that stem cells are much cheaper and safer than CI.

    4. Hybrid CI is already a failure, hope it does not get FDA approval. People were still losing their residual hearing and many were hearing worse with CI. You can easily and safely access high frequencies with transpositional HAs, why get invasive, risky CI surgery?

    5. If you think CI will keep the auditory portions of your brain healthy, stem cells will do even better since it's natural biological hearing. Besides, if you get CI, you won't be able to get stem cells. That's why im saving both of my ears.

    6. I grew up 100% oral and this has worked for me. My HAs and reading lips keeps my brain stimulated and allows me to understand alot of speech. Stem cells will only improve upon this. I feel that stem cells is my best decision today.

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  50. In response to your points:

    1. I don't think anyone is against the use of adult stem cells. That said, everyone must make up their own mind.

    2. CIs are only designed for those who don't get suitable benefit from hearing aids. As you obviously do not believe yourself to be in this category then I don't see why you're so anti-CI. This technology was not designed to benefit everyone. At present it helps those who have no useful hearing for speech perception, many of whom have grown up in a hearing world and would be lost without them.

    3. I haven't seen any reasonable explanation of why you presumedly think that stem cells are a safer option than CIs. Regardless of which treatment option you chose, at present both involve an invaisive proceedure that may cause further damage. In saying this, 20 years of experience with CI surgery means surgeons and engineers have been able to improve surgical methods considerably, and many CI users retain significant levels of residual hearing following implantation.

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  51. 4. You're missing the point. Studies have shown that 7/10 people have an extreme dislike for the quality of sound provided by transposition aids. Hybrid CIs are an alternative for such individuals and enables them to retain the natural quality of hearing for the low-mid frequencies and provides them with some of the speech information they are missing in the high frequencies. In addition, should their low-frequency hearing worsen the implant can be re-mapped so that the CI supplies information regarding all frequencies. Such users perform equally as well as those with full-insertion electrodes. In saying this CIs offer people a choice. Not all people (yourself obviously) are suitable candidates for a CI. That's why individuals are thoroughly assessed to determine whether they would get suitable speech perception through optimised hearing aids. Just because it's not the right option for you doesn't make it the wrong option in an absolute sense.

    5. Stem cells offer great promise, but even if they are able to engineer hair cells, they then have the problem of having to restore the complex arrangement of hair cells within the cochlea, reconnect the primary auditory (spiral ganglion neurons) to allow the transmission of information along the auditory nerve and ensure that the right information is being sent along the right fibres (as the wiring of the peripheral auditory system is not incredibly flexible, being mapped while you are still in the womb). Yes CI's provide a degraded perception of sound, but at least the fibres are being stimulated and maintained while individuals wait for stem-cells to be an option. If you do nothing, auditory neurons with no purpose simply give up the ghost and die. At least if they're alive they could potentially be remapped according to their original organisation.

    I don't know where you've gotten this assumption that recieving a CI will preclude you from stem-cell treatments full stop. Current CI's intracochlear electrode arrays sit within scala tympani and are designed not to interfere with the cytoarchitecture of the organ of Corti (where the hair cells are located). In addition, they are designed to be easily removed without damaging the inner ear, to allow for device replacement (which is inevitable, even though 96% of early generation implants are still operating normally after 20 years).

    6. Yes, transpositional aids and stem cells may be your best option. But please don't go about demonizing CIs just because they're not your personal preference. The decision to get implanted is not one taken easily by and individual, and such a strong anti-CI bias does not help anyone. Neither do statements like "Hybrid CI is already a failure" particularly when the research shows this is a useful alternative for many individuals. What people decide is their own choice. Much of the Pro-CI statements are also not useful as they are based on opinion and not on fact.

    PS: For most Stem cells are a hope for the future, not a decision for today. If you aren't in a position to recieve stem cells if/when hearing becomes too difficult that you are able to keep an open mind about all alternatives.

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  52. Current obstacles to successful stem-cell therapy according to Beisel, Hansen, Soukup & Fritzsch (2008); Regenerating cochlear hair cells: quo vadis stem cell. Cell Tissue Research (333), 373-379.

    "...Initially, it is critical that we not only find a way to turn on(stem cell) proliferation, but that we also have a means to turn it off. Without adequate cell-cycle control, any of the (stem-cell) techniques discussed above have the risk of forming tumors. Furthermore, the cochlea is an enclosed space surrounded by bone, in which an inner ear tumor would very rapidly destroy the delicate organ and the adjacent facial nerve..."

    "...Another critical issue for the restoration of hearing is the rebuilding of the appropriate cytoarchitecture required for the organisation and polarisation of the hair cells within the organ of Corti... Likewise, the supporting cell distribution and differentiation (2 rows of hair cells, inner and outer with different functions and different architectures) is critical for hearing."

    In lamens terms, at present scientists do not know:

    1. How to turn on the proliferation of adult somatic stems cells in the cochlea.

    2. More importantly, how to stop the proliferation of adult stem cells to prevent tumour growth and complete cochlear destruction.

    3. How to differentiate the two types of hair cells (inner and outer) which play different roles in 1. amplifying sounds and 2. encoding sound information.

    4. How to get the hair cells to grow in the right location.

    5. How to get hair cell stereocilia (hairs) to align with the correct polarity (direction) to ensure normal cochlear operation and prevent future hearing loss.

    ^ That my friend is at least 20 years of research right there. Don't believe marketers who say widespread stem cell therapy is just around the corner. They're saying such things so they can get funding for all the above. Think for yourself and at all the information available.

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  53. Miguel:
    hi.
    RNL Biostar website has been updated. Sohl case appears in the section of Patients.
    greetings and good year 2010!

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  54. "In lamens terms, at present scientists do not know"

    They already know from all the animal models. Nepsis has a few people signed up. Should stem cells be a success for them and improve their hearing, I am signing up too.

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  55. "They already know from all the animal models."

    None of the 5 problems posted by anon. have been solved. Where is your proof for saying the opposite? Can you please focus on the details and give us a link or some documented evidence that what you're saying is true? Here are the points again. Feel free to address them individually.

    1. How to turn on the proliferation of adult somatic stems cells in the cochlea.

    2. More importantly, how to stop the proliferation of adult stem cells to prevent tumour growth and complete cochlear destruction.

    3. How to differentiate the two types of hair cells (inner and outer) which play different roles in 1. amplifying sounds and 2. encoding sound information.

    4. How to get the hair cells to grow in the right location.

    5. How to get hair cell stereocilia (hairs) to align with the correct polarity (direction) to ensure normal cochlear operation and prevent future hearing loss.

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  56. "Possibilitats futures de la regeneraci√≥ cel·lular aplicada a la sordesa. Dr. Nopporn Jongkamonwiwat.
    Senior Research Fellow. Centre for Stem Cell Biology. Department of Biomedical Sciences. University of Sheffield (United Kingdom)"
    source: http://www.acapps.org/web/noticia/19/bloc-investigacio-xiv-jornades

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  57. http://news.bbc.co.uk/1/hi/health/8452874.stm

    This is an interesting article on Stem Cells, although not specifically linked with hearing loss I think you will understand the message!

    AntoB

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  58. http://www.sciencedaily.com/releases/2008/09/080903134211.htm

    This is excellent proof that stem cells works for hearing loss. Notice that their cause of hearing loss is not autoimmune. Ive spoken to the stem cell labs and they can treat all cases of SNHL, just that they do not guarantee how much improvement will be achieved. Stem cells has been tried in tens of thousands of humans for other diseases/conditions, most of them resulting in an improvement.

    If you are not anti stem cells and are interested, use Google to search for thousands more articles. All your answers can be found there, including the article I linked above. If you choose to dismiss all the evidence/proof of stem cells working and be anti stem cells, that's your choice. I am not going to argue or try to change your mind. Don't get stem cells for yourself. Ill be getting stem cells and anyone else who is pro stem cells will also be getting stem cells.

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  59. 1. "This is excellent proof that stem cells works for hearing loss."

    I think this is an excellent proof of two things: your inability to understand a scientific paper and your habit of drawing highly exaggerated conclusions based on very modest results. Anyone interested should read that paper, but let me quote a short passage here:

    Haring loss "MAY be repaired" since the authors "show that a SMALL NUMBER" of stem cells "migrated to the damaged cochlea and repaired sensory hair cells and neurons."

    What is also important is that this was an experiment on MICE, not humans. Did you even read the article carefully enough to understand that?

    2. "If you choose to dismiss all the evidence/proof of stem cells working..."

    The fact is, you haven't provided any evidence in the form of peer-reviewed papers or studies. All you post are anecdoctal stories and testimonials as well as PR releases from companies with a financial stake in selling products.

    I suffering from hearing loss myself and would love to see successful stem cell treatments. I have no reason to be "anti stem cells" other than the fact that I want to see some hard evidence before I put my ears on the line.

    As for the five points above, please direct me to studies that demonstrate these problems have been solved. Honestly, I don't think you even understand the issues or dangers.

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  60. Here's another passage from the article:

    According to Revoltella, their results SUGGEST the POSSIBILITY of an "EMERGING strategy for inner ear rehabilitation….providing conditions for the resumption of deafened cochlea."

    Emphasis mine! But you need it, Dude!

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  61. "Recent update! Chloe's hearing was now restored to amost perfect level".
    source: http://twitter.com/rnlbio

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  62. Hearing loss *is* being repaired. Those articles are a few years old, so much has changed by that time! The articles show stem cells working in the animal model, but we know today it works on humans. Chloe's success is not anecdotal, but hard proof. You just wait and see, there will be many more with her success! Ok so you aren't against stem cells, but you are a skeptic. Youll become a believer in due time. I am a beliver today. I am waiting for ~100 pioneers before I get it myself unless some stem cell center offers it cheap or free to pioneers. What about you? How did you lose your hearing and what's your hearing loss like, any audiograms?

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  63. totally agree,God gave man the ability to learn and progress,this development is just a milestone in the direction of human cures that is accelerating at a rate of knots,PRAISE THE LORD,I personally can't wait for that day when my lost high frequencies and tinnitus is restored,being a 56yr old ex fulltime musician I think I will book a ticket on the front row of the Proms when that day comes,I continue to pray for our scientists and the ralease of more funding for research.

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  64. Dude - My doctor diagnosed otospongiosis of the inner ear. Apparently the softening bone releases enzymes that destroy hair cells.

    Yes, I'm a skeptic who wants to believe, but to me there are just too many unanswered questions, and I wonder why the respected names in the field advise caution and think real treatments need a lot more time to develop than you do.

    Still, I wish you all the best.

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  65. "GenVec and Novartis will collaborate to discover and develop novel treatments for hearing loss and balance disorders".
    source: http://www.smartbrief.com/news/bio/industryPR-detail.jsp?id=57235678-B6B6-4094-94CF-828BBDFA697D

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  66. Laser hair removal is a now common procedure which removes hair from a persons body using a laser, laser technology is able to break the hair growth cycle by targeting and killing the hair follicle. Visit Great info for the details.

    ReplyDelete
  67. Deafdude, you have a legitimate obsession with stem cells. I really hope it works out for you, bro.

    ReplyDelete