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!

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.

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.