Thursday, December 10, 2009

Some people are so pro-CI they are biased! I see both sides!

I posted on a deaf forum(link) of someone who experienced a negative CI result.
(Note: if you are very pro-CI and refuse to hear both sides to CI, including any bad results, don't read this blog.) Update: Some of you went ahead and read this blog anyway and decided to insult me. I did warn you that this post would anger those who are biased towards CI.

She got CI several years ago. It helped somewhat for environmental sounds but no improvement in speech. Her CI started to malfunction after 5 years with the electrodes going bad. This caused headaches and electric shocks inside her head. She doesn't want another CI and realizes she can be a vet without being able to hear. She stands correct that people should look at both sides of CI. I always saw both sides and decided CI isn't for me because I don't want to give up my residual hearing like she did. For those who have gotten or plan to get CI, good luck with your choice.

-------------------her story below---------------------

Actually, no. I became profoundly deaf at 4, hearing aides worked for me for a while, I could, like you, hear airplanes and cars, and even tell when someone was talking, and sometimes I could pick up a little bit of what they were saying. I spoke fairly well, and then I got a CI. at first, it worked, not perfectly, but i could hear more things, cats meowing, birds tweeting, and that was wonderful, then i started to realize... my speech hadn't gotten better (and yes, i went to speech therapy and CI therapy) my hearing hadnt improved past that point, i still struggled to understand what people were saying, i couldn't tell the difference between a male's voice or a female's voice, i could only understand simple words like my name, no, mom, dad, hello, things like that without looking at the person's lips, and etc. about 5 years after i got the CI, i stopped wearing it, and I'm glad I did. I had started to get frequent headaches while wearing it, and I would get electrical charges more frequently than normal. People have so many positive things to say about CI's, but you should look @ both sides. I, also, want to be a vet, and it's possible even without a CI.

-----------------The responses I got?-------------------
Note that the responses are copyright by the respective authors which were posted on a deaf forum(link) I had kept their biased pro-CI responses anonymous so others won't insult them. But if they insist on making their responses known, fine then. Freedom of speech gives me the right to disagree with what other people say. If you can't handle anyone disagreeing with you, then don't read/respond anything you don't want to hear about.

1. Please just quit it. I can't get one, so it does not affect me, but it makes a lot of people here sad and angry.(sorry, but in the real world, no surgery has a 100% chance of success)

2. it's just getting really old at your negativity towards cochlear implants(you only see one side to CI: the positives)

3. To me it just another Hearsay post.(says the biased pro-CI guy)

4. The only thing your ill-informed assessment of "CI failure" -- based on some uncited, out-of-context paragraph about someone's experience (either real or imagined) -- exposes is your own motivation to tear down options other than that which you (or your parents) have chosen for your situation.(it's real and the only motivation is to eliminate one sided bias.)

5. Oh you have all the right in the world...but you rarely post ANYTHING good about CI...and we get that YOU do not like CI but for others who are maybe looking into it and are new users you paint a very bad picture for them, and that's not very fair is it.(I have posted alot of good about CI in my blog)

6. I am sorry to hear she have a bad experience with CI, but I don't see it as a reason to post it as a case why one should go against CIs. It's completely one=sided burdened on the user since it was malfunctioning.(I never said anything about going against CI)

7. Then her CI malfunctioned and she chose not to fix it. Totally her right, and decison.(she did not gain speech benefit anyway from the start)

8. Exactly. I don't know that I would consider that a failure story. To me a failure story is when there is zero benefit.(for her, it's a failure. For others it's a success)

9. hum bug. deafdude, seriously, get a life and quit bringing in non-sourced garbage to these boards. geez!(I have the right to eliminate one sided CI bias)

10. He need to stop being negative toward CI and bring up the threads. He couldn't stop it.(ironic since you used to be negative to CI. Now you are biased to the extreme in the opposite direction. I am unbiased)

11. But I'll tell you this. A person who is putting all their hope into a device to solve their problems are setting themselves up for failure.(exactly!)

12. My coworker has a wife whose CI doesnt work at all for her. She got implanted 3 years ago and she hears absulotely nothing with it. He says that she hates it so much and regrets getting it.(if she wasn't informed of the risks, she can sue. If she was informed, she made her own choice and accepted the risks.)


[QUOTE]If my husband had thought for one moment that he would be living the rest of his life with vertigo and that several times a day his whole world would spin, I highly doubt he would have gone through with implantation. Yes, he is in the minority of those who have had difficulties with implantation. Yes, he is now able to hear. Is it worth it to him? NO He was able to function quite well in life prior to implantation, and now his entire personality has changed and it has taken its toll on the entire family.

I wish someone had said, "hey, there is a possibility that such and such could happen if you get implanted". Maybe he would have made a different decision, one that he won't regret for the rest of his life.[/QUOTE]

This is why posts like his should be taken seriously and factored into the CI risk. All im trying to say is that CI is not 100% risk free like some people here think. I respect those who make the difficult choice, but they must be informed first.

[QUOTE]But, how can a parent make an informed decision regarding any aspect of their child's future without having the information necessary to weigh pros and cons? Not having complete information is having negative affects onthe language development and educational acheivement of numerous deaf children. To simply ignore the negative rather than investigate it and weigh it against the postive is nothing more than the avoidance of reality.[/QUOTE]

This is what I feel is going on. You guys are getting mad and ignoring the negative im posting about.

[QUOTE]I am so sorry about your husband's complications, but it is a perfect example of candidates not being suppplied with all of the information they need to make an informed choice.[/QUOTE]

This is why I am supplying the necessary information.

[QUOTE]OMG I cant believe ANY parent would choose to ignore the negative aspect of implanting a child. To ME right there would be considered child abuse. IMHO you cannot implant without making an informed decision. Informed means not just the positive but the negatives as well.

For example, if I had a child that needed a artificial leg, I would not just say oh go ahead and do it as the positives will outweigh the negatives so I dont need to hear them! My goodness, that right there would be saying I dont wanna know how to take care of it if something goes wrong.

I know for a fact artificial legs cause soreness,chafing and many other things. I would wanna know that before getting one for my child.

A CI is a much bigger issue than an artificial leg! I for one would consider myself negligent if I didnt find out any negative effects![/QUOTE]

couldn't agree more.

[QUOTE]I believe in cochlear implants. I have them. I only post on the part of alldeaf about hearing aids and cochlear implants. Lately all the postings have been negative. My cochlear implant is not negative. I knew all the negative before I set foot in the hostipal. I made my choice. I have discussed this with others and guess what - they also researched and made clear choices. Yes, I believe in a families right to implant a child.

Research and statments can be twisted and turned to fit our purpose.[/QUOTE]

On the flip side, today, all posts have been positive about CI. This is also bias. I am happy that her CI worked out for her.

[QUOTE]All aspects - positive and negative - must be taken into account in order for anybody to make an educated decision.[/QUOTE]

Bingo. This is all im saying and stating my point in this thread.

[QUOTE]Those parents who DO look at the positives and negatives of getting a CI still have to make the decision. Since I believe most decisions have turned out good and what can you say about the ones that "failed"? Sad, isn't it?[/QUOTE]

Id let the child decide himself when he's older. Adults can decide for themselves once they put their bias aside and read both good and bad CI experiences and make an informed choice. I will respect whatever choice they make.

[QUOTE]I agree with you, Bear. It would be tantamount to child abuse if one ignores all the negative aspects of implanting a child.[/QUOTE]

Without getting into a lengthy debate, ill just say this is a difficult choice. I would never force CI on my child, but I won't tell other parents what to do except not to ignore the positive aspects to CI [B]as well as[/B] the negative aspects.

[QUOTE]I am total speechless when anyone choose to ignore any negative/disadvantages issues to consider positive only. *goose bumps* I MUST know about positive and negative before I make a decision. I also MUSt know how many % chance to positive and negative as well...[/QUOTE]

Everyone has the right to know this. No one should be getting mad when the negatives are being discussed or you won't be able to make an informed decision if you think CI is 100% positive success.

[QUOTE]jag, the vertigo is similar to that of being drunk. In fact, it is basically the same thing. When you are intoxicated from alcohol, you become dizzy due to the change in fluid level within the inner ear. When you sober up, your fluid level returns to normal. With the cochlear implant surgery, the doctor cuts into the inner ear, thus changing the liquid level PERMANENTLY. So it is like you are constantly drunk. My husband says it "takes the fun out of drinking" lol

I understand that life is full of risks, but the doctor really downplayed the risks. When those risks were presented to my husband, it was like "these things happen so seldom, you really don't have to worry about it". I feel that was rather deceptive now that he has to "worry about it" for the rest of his life.[/QUOTE]

It is unfair to anyone to be fed only the positive aspects and not be properly informed of the risks. I am seeing this happen for many other elective surgeries, including lasik. They are surprised and upset to experience a complication. If they were properly informed, they would expect a % chance of complication and accept this.

[QUOTE]yea,I'm aware of that ,however, I will take the risk[/QUOTE]

Since you are aware of the risks and you choose CI, you are making an informed choice and accepting both pros and cons to CI. Good luck, hope all goes well.

[QUOTE]Yes I believe in people being notified of all the risks with the surgery, particularly if they are at higher risk for something than other candidates.

I think it can still be hard though if you are one of the small minority of people whose risks eventuate into reality. Even when people are notified of risks they are obviously hoping that it won't happen to them and don't focus too much on it. Every day when we hop into a car, we don't often reflect on the risk because we stop thinking that a serious accident might one day happen and so there is shock when it does occur, even though technically we always knew there was a risk. So perhaps counselling for clients when things don't work out as expected would be a good idea as well?[/QUOTE]

I believe everyone needs to be notified of all the risks. It's their [B]right[/B] to be informed! I understand it's not fair a minority end up with a bad CI(or any surgery) outcome. I wish everyone would be a CI(or any surgery) success, but the [B]reality[/B] unfortunately does not reflect this.

[QUOTE]I'm sorry to hear about your husband. I think that having vertigo as bad as this is probably worse then being deaf. There are lots of things that are worse then deafness which people don't seem to take into account when they recomend CI's. To me it's rather like playing Russian Roulette and I'd rather not gamble with my health in this way.[/QUOTE]

This is why I have learned to accept my deafness and make do with what I can still hear with HAs. Yes I know im getting stem cells and yes I know there's no guarantee my hearing will improve. I will accept this and keep enjoying what sounds I can hear with HAs. There's more to life than understanding a high % of speech without lipreading. There's nothing wrong with being deaf and CI isn't mandatory to a happy, successful life. If you feel the need for CI, go ahead, I wish you luck in a good outcome.

[QUOTE]No one knows how hard of decision it was for me to make for my children to get implanted. Even to last minute, I wanted to pull my son away from the surgeons hands.
Having my children implanted was the best decision I have made. I know it is not the best decision for all parents but for us it was.[/QUOTE]

Deciding on CI for yourself is a difficult decision. Deciding for your child is 10x more difficult. I am deciding on HAs if any of my future children are deaf. I strongly feel that HAs can do the job very well as it has for me. For those who would rather choose CI over HA, it's a very hard decision.

[QUOTE]It is literally impossible to undergo CI surgery or consent to CI surgery for someone else without being informed of the risks involved. No surgeon would proceed without informed consent and no hosptial would allow it. If any of you serioiusly contend that you suffered a known CI complication of which you were not informed prior to surgery, you should contact an attorney right now and sue the hospital for performing the procedure without informed consent.

I don't know how it is possible to undergo CI surgery without being aware that vertigo is a possible complication. I was informed of this at least five times, along with statistics on the frequency of the complication. Temporary vertigo is common. I experienced it. Permanent vertigo is rare. I decided to take the risk. I daresay that, if I were to claim my surgeon lacked informed consent to perform my CI surgery, I would quickly be provided with a copy of the written document I signed listing in excruciating detail every negative CI consequence anyone had ever heard of or imagined and acknowledging that I'd been so informed.[/QUOTE]

We will be seeing a class action lawsuit where all those who weren't informed will be joining the lawsuit. This includes those who get good benefit from HAs and weren't informed that their speech score is way above FDA requirements. I see about 25% of people who would be scoring well on speech with properly fitted and programmed HAs still get CI. Some of them end up hearing worse with CI.

On another note, any surgery or procedure I get, I will definately ask for consent forms and a copy for me to keep. I will [B]inform[/B] myself of all risks and blame no one for any complications because I know im [B]rolling the dice [/B] and sometimes it ends up "snake eyes" bad luck happens in the real world and it can happen to anyone, including me.

[QUOTE]How important is it to you to be able to hear and to communicate orally with those people, the vast majority of people, who don't sign, don't understand deafness and have little or no experience with deafness? If it is not important to you, then there is no reason at all for you to run the risks of CI surgery. You will always have a place in the deaf community. Personally, as a late-deafened adult deep into a career that absolutely requires me to communicate orally, with a family depending on me to earn a living and support them, for me the CI decision was a no-brainer. I would, without hesitation, make the same decision for a child in my care who is too young to make the decision. If I were the deaf parent of a deaf child, I might very well make a different decision.[/QUOTE]

There are many people who get CI out of being pressured or buying into the hype but realise they don't actually need CI. I am able to communicate orally with others, with or without HAs. I would still like to hear better, but if this doesn't work out, ill accept this. I can't speak for you except to say that you should write a list of pros, cons and reasons why you want/need CI and decide carefully. Good luck!

[QUOTE]As I remember recalling someone created a thread about a child who had a cochlear implant and was paralysis from the cause of repeating surgeries, some cochlear implanter's on this board of alldeaf and some hearing parents did not believe her story. I'm disappointing because it seems like some does not want to hear the negatives this is exactly one reason why I created this thread. There is no ONE side positive outcome for all those who received or planning on getting a cochlear implant. It's very important to look at both sides of the pro and cons of cochlear implants the positives and negatives aspects.[/QUOTE]

Im in agreement and am seeing people on my own thread not believe anything negetive I post about CI. This just shows their extreme bias and them being unable to make an informed decision.

[QUOTE]because some negatives aspects are not being reported or share, it's more like they just want to show the good in cochlear implants not the bad.[/QUOTE]

This is exactly the feeling I am getting. Some of you used to be against CI and saw only the negatives, now you are very pro CI and see only the positives. I see both sides of the fence!


Feel free to discuss/comment them here and ask questions. Keep an open mind and see both sides to CI like I do. Note: If you want to discuss stem cells, please post your comments here

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.

Wednesday, October 21, 2009

Cochlear implants give performance similar to HAs with 80db HL

This study shows CI matches HA with 80db HL

Comprehensive study that demonstrates medium-gain HAs with only 40db gain was able to match the average CI result except in HINT+5 where HAs were significantly ahead!
The average HA was 78db PTA unaided, 38db aided. For CI it was 110db HL aided down to 36db.

My comments: With a 110db HL, even high-gain HAs with 70db gain would aid you down to only 40db. Speech scores with such a profound loss would be far below the scores of CI and those with severe losses because there's extensive cochlear dead regions associated with a 110db loss. Also the surviving hair cells would be of very low quality and contribute little to acoustic information.

CI matches HA with 90db HL

Ive been doing my research on comparing CI vs. HA and I found this! I will keep looking for more articles that compare the two. But from what ive researched, CI today usually gives better hearing than what HAs can give for a profound loss. But CI appears to match the performance of HAs for a severe loss.

I also learned that those with severe losses generally score at least 70% speech on a difficult monosyllable test. I will do more research on speech scores for different degrees of hearing loss. But that article does show that those with profound losses generally scored below 50%. It's that group who with CI could hear comparable to those with severe losses and HAs. Speech would improve from perhaps 40% to perhaps 80% which is significent.

HAs come out way ahead of CIs in most tests

Results: The aided pure-tone hearing thresholds of the hearing aid users were better at low frequencies. In contrast, the cochlear implant group’s thresholds were better at high frequencies. with a statistically significant difference at 250 and 6000 Hz.. The hearing aid users had similar scores to the normal hearing group in vowel identification and pattern perception. In addition, the hearing aid group performed better than did the cochlear implant group in vowel identification, pattern perception, and daily sentences tasks (P = .001, P = .02, P = .0001, respectively). No significant differences were found between the hearing aid and cochlear implant groups in multi-syllabic, phonetically balanced words, and consonant identification tasks. Although similar performances were obtained for three groups in music perception tasks, there was a positive and significant correlation was found between pattern perception and rhythmic perception ability of the cochlear implant group, whereas the hearing aid group, who had better performance in multisyllabic word discrimination, also performed better in tonal and rhythmic tasks.
My comments: Hearing aids are great, no need to say any more!

FIGURE 3. Advances in technology and signal processing in cochlear implants have resulted in improved performance outcomes over time. Shown are group mean percent correct scores for CUNY and HINT sentences in quiet, and for CNC monosyllabic words. Source: Internal data from Cochlear Americas clinical trials.
My comments: CI performance improvement has peaked and leveled off since the early 2000s. Future technologies won't even be CI based as CI has physical limitations due to physics and principle.

Results of Pediatric Cochlear Implantation Compared with Results Obtained with Hearing Aids

Profoundly deaf children with 110db HL and 22% speech improved to 72% speech after CI and they hear with CI comparable to those with a severe hearing loss(70-85db) younger children did better with CI, the performance of children implanted between age 2 and 4 was equivalent to the mean performance of children with hearing loss of 70-85 dB wearing hearing aids.

Image got cut off, to view in full, click here

My comments: The HI group had only 55db PTA HL while the NH group had 5db PTA HL. Properly amplified, a moderate HL(60db max) which involves only the OHC and not IHC can give you near normal hearing except in the most challenging situations. Even with a channel simulator, the NH and HI did far better than CI. CIs do a great job in quiet but not so well in noise. It should be known that CIs aren't a cure and they won't give you anywhere near normal hearing, but they can be great for the profoundly deaf.

I found a recent CI study that shows the average performance for CI speech scores. Different studies show slightly different scores. The concensus is that CI can match HAs for someone with a severe hearing loss. CI is usually better than HAs for those who are profoundly deaf so it's no surprise many become CI candidates.

Friday, September 11, 2009

Four year old gets stem cells, improves 30db! Before, after audiograms provided!

Four year old successfully treated with stem cells for deafness!

This breaking news came from Phi4sius. He got the information directly from them.

From Beike Biotech. I have been in touch with them since earlier this year. They responded earlier that they hadn't yet treated Sensorineural Hearing Loss. Obviously, things have changed on that front:

We are also happy to tell you that we have successfully treated two patients with severe sensorineural hearing loss with stem cell. The last patient was discharged last week from our [name removed to protect privacy] treatment center. We arranged some hearing tests for this 4 years old patient before and after stem cell treatment. Also we carried out a treatment satisfaction survey with the parents after treatment. Patient witnessed great improvement after stem cell treatment and was satisfied with this treatment. 

Below we will give you a comparsion about the change of related hearing tests before and after stem cell treatment of this patient.



Freq. - Right (dB) / Left (dB) 
250 - 70 / 70
500 - 91 / na
1000 - 106 / na
2000 - na / na
4000 - na / 98


Freq. - Right (dB) / Left (dB)
250 - 60 / 40
500 - 84 / 84
1000 - 74 / 109
2000 - 92 / 107
4000 - 101 / 96

ABR - No significant changes after treatment. 

The results can't get anymore scientific than that other than long term studies. More treatments will probably yield more results after what I've seen online. 

I have compiled the audiograms from the above information to make it easier to read! This audiogram shows both before and after on the same audiogram. It's crowded and I think I made a couple minor mistakes when compiling that audiogram. But the general idea is you can see that he improved in every frequency! Look how far up he hears at 250Hz! Wow!

This is his "before" audiogram. It's considered a left corner audiogram and his good ear is as bad as both of my ears! His bad ear is dead in all frequencies from 500Hz and above, notice the arrows pointing downwards at the audiometer's limit of 110db HL? Even his good ear is dead above 1000Hz. I know what this is like as this is what my current level of hearing is.

This is his after audiogram! He achieved as much as 30db improvement in some frequencies! I was shocked and amazed at his excellent result at 250Hz in the left ear. Hearing unaided at 40db is just amazing! I was hearing at 35db at 250Hz sloping downwards to nothing in the higher frequencies with my old Widex Senso hearing aids! I am so excited to soon get the chance to be hearing unaided better than what many profoundly deaf hear aided! I showed this to my dad and he's all excited for me too! He said that is amazing hearing and I would hear some sounds/speech unaided and with HAs, I would hear alot more speech than I currently do!

Although he responded to every frequency after stem cells, his left ear may still be dead at 1000Hz and above. If they tested 750Hz, he may still have some usable hearing there. Before that, he probably had no usable hearing above 375Hz. So gaining a full octive of hearing is impressive! His right ear improved so much at 1000Hz, it's actually better than at 500Hz(and possibly at 750Hz too!) He has good, usable hearing to at least 2000Hz, possibly even 3000Hz to 4000Hz! We don't know what he's scoring on speech, but we know that stem cells has drastically improved his ability to understand speech, hear sounds, appreciate music and has given him higher frequency hearing which he lacked before!

Let's go over the facts and myths of stem cells!

1. Myth: Big deal, so youll get a 5db or 10db improvement.

Fact: Uh, no. You can get a 30db improvement with today's stem cells and in 3-5 years from now, many deaf people will be seeing more than 40db improvements!

2. Myth: Stem cells is risky.

Fact: Mesenchymal stem cell(MSC) unlike hematopoietic stem cell(HSC) does not produce immune response. Therefore does not require match. No one has ever died or became very ill due to stem cell complications out of over 5000 patients who have gotten stem cells for all kinds of diseases. Stem cells is far safer than any drug or surgery and is rapidly becomming the top choice to treat diseases.

3. Myth: Stem cells for deafness won't occur for at least 30 years.

Fact: Oh really? It's here now! Some labs have been using stem cells to improve hearing as early as 2006. This four year old was treated in 2009 and it's expected that we will see dozens, if not hundreds of people treated and have their hearing improved with stem cells in 2010 and beyond.

4. Myth: Big deal, cochlear implants are better.

Fact: Today, as of 2009, only in some cases but not for much longer. Stem cell technology is only a few years old. Cochlear implant technology is a few decades old. It wasn't till 2005 that cochlear implants became good enough that those who actually still had a little residual hearing were finally candidates. Before that, only those with no residual hearing or so little residual hearing that you scored 0% on speech were CI candidates. I suggest you view the advantages of stem cells over cochlear implants.

5. Myth: Stem cells is unaffordable.

Fact: The price is estimated at $30,000 for stem cells and that already includes travel and other costs. A cochlear implant costs twice that per ear and even if insurance covers that, youd still need to spend a fortune to get a 2nd CI. We all pay with higher insurance rates for something that's borderline elective anyway. I hope insurance doesn't pay for stem cells other than for diseases that could be fatal. No one has ever died from being deaf. Go and save the money yourself or take out a medical loan. Let us afford insurance to treat life saving diseases!

6. Myth: Stem cells won't cure your deafness.

Fact: Not yet, but as stem cell technology matures, it becomes a question of when, not if. The timeframe could be 5 years, 15 years or even 50 years before enough hearing is restored to make you hearing. This is defined as 25db(average) across the audiogram and 85% speech accuracy. It's been observed that even in birds who have a wonderful, natural ability to restore hearing, a 23db HL was the best possibly achieved. Many birds were mildly to moderately hard of hearing, although still not considered deaf.

7. Myth: I have no residual hearing so stem cells is hopeless!

Fact: Today's stem cell technology can restore a total hearing loss(125db HL arbitrary value) down to the 90-100db range. Severe degrees of hearing loss may be improved to as good as 40-60db. You would hear with HAs far better than CI with this much hearing. Remember that a normal hearing person has 15,000+ high quality hair cells per ear and can hear 0-10db HL to 16-20KHz for children and 10-20db HL to 12KHz for adults. Stem cells currently can regrow several hundred medium quality hair cells which work alongside your existing low and medium quality hair cells. Too many hair cells would only cause you to hear worse! Bird's regenerated hair cells were of medium quality unlike the originals which are high quality.

Further comments from me: I plan to travel and get stem cells to improve my unaided and aided hearing. The estimated timeframe will be 3-5 years as I am going to wait till hundreds of others get stem cells before me. I want to see results, audiograms, facts, blogs, etc from the pioneers who go before me. My friend Phi4sius says I may see enough results in less than 2 years for me to go ahead. He's going ahead soon. I look forward to his result and hope he improves alot in his dead ear!

For those of you who say I could get cochlear implant(s) now, I would rather have stem cells even today than a cochlear implant and for good reasons. If some stem cell lab was willing to take me on as a case study at no cost, I would seriously consider! Otherwise I am not in a hurry unlike the parents of that 4 year old. I don't know why the parents couldn't wait a few more years, maybe they were afraid he was falling too far behind on speech development? He might not have had enough residual hearing like I did back then to develop speech and speak clearly. Well stem cells addressed this and his hearing is much better than mine ever was! His parents didn't want to put him thru surgery for a CI. My dad commented that stem cells even today is the better(and arguably safer) choice since you avoid scary surgery! Stem cells can be administered by an injection or IV.

I am waiting a short while because results(and safety) will only improve. I can't afford to spend $30,000 to get it every year. The first time I get stem cells will be for around 40db improvement and the next time I get it will be for enough improvement to let me hear without HAs. I will post more as I get more news and audiograms of others who are pioneers in stem cells. This will give us a better idea of how much improvement to expect among other fators. Thanks for reading. I am so excited for those who improve their hearing and for my day to come!

Sunday, August 23, 2009

Stem cells is superior to cochlear implants. Well worth the wait!

I was discussing with my friend about stem cells vs. cochlear implants and how stem cells will be so much better. After all, stem cells can improve hearing and eventually make you hearing! Cochlear implants are just an aid to give a profoundly deaf person access to sounds but don't come close to natural hearing. I did talk about the fact I might get CI in 3-5 years but seeing that stem cell technology is advancing much faster, ill probably get the chance to get stem cells by then, that's my choice. I have made many valid points for my choice. Below are the advantages and disadvantages for your reference.

Advantages of stem cells:

1. Hear unaided

Perhaps the biggest advantage of them all and something I desire the most! Even a partial improvement of as little as 20db(although ive been told 40db is likley) will give me some ability to hear instead of the silent world I now experience. I get excited just thinking about this! It's going to be so surreal to hear something, reach for my HAs and find they aren't there! This is something cochlear implants can never, ever achieve. In fact, most people actually lose their residual hearing and thus their ability to hear even the loudest sounds. They can never go back to HA if CI doesn't work for any reason as CI usually wipes out your residual hearing. Even those who keep some residual hearing usually end up losing it within a year. Hybrid CIs are a failure for the same reason. Save your residual hearing for stem cells to improve upon that! CI never made sense for anyone with residual hearing but I, my audiologist, parents and friends admit it's great for those with no(or very, very little) residual hearing. No HA would help since you need residual hearing(110db max HL) to amplify.

2. Lower cost

Cochlear implants cost $50,000 per ear of which $35,000 is due to the surgery to implant. Insurance may sometimes subsidsize the cost for one implant. Many feel "one sided" with only one CI but can't afford the out of pocket cost for a 2nd CI which insurance rarely covers. No one knows what role insurance will have in covering stem cells, im guessing they will cover deaf babies and young children. They are very unlikley to cover HOH people since they are very functional with any decent HA and they can still hear some sounds/speech unaided. Also there's way more HOH people than deaf people and insurance can't afford this.

Older children and adults can take out a low(or even no) interest medical loan for the $20,000-$30,000 cost of getting both ears done with stem cells and pay off the loan over a decade. Many others may be able to get some financial support from (hearing) family and friends in the form of gifts and interest free loans. My parents will help me afford stem cells as they know how great it's to be hearing.

3. Lower risk

There's many associated risks of cochlear implants, surgery being the biggest risk. This is one reason I am not keen on getting CI. Neither my parents nor audiologist recommend CI for me either. Ive seen people develop all kinds of complications and infections including meningitis(vaccines reduce that one risk) damage to nerves and allergic reactions. Nerve damage may cause permanent numbness to the face, twitching of the eye, loss of the sense of taste and constant pain. The materials, including silicone in the internal CI can cause adverse affects. Silicone is toxic to everyone and should never be in the body! I read a blog of a lady who was allergic to the external speech processor and no one could remedy this so she was forced to stop wearing her CI. You also take the risk of being unable to get a MRI or other medical procedures that may ruin your internal CI.

Stem cells that are derived from your own skin/blood are risk free, your body will never reject your own stem cells! The process may be as simple as having a small vial of blood removed or a piece of skin scraped from your inside cheek or arm. Your cells are then processed into adult stem cells and injected(or inserted by IV) back in your arm. About the only risk is failing to improve your hearing. No residual hearing should be destroyed so you can go back to HAs and hear the same as before.

4. Wide acceptance

Once stem cells become mainstream and FDA approved, they will be accepted by 99.9% of hearing people and by 90% of deaf people. The deaf has learned to accept HAs and more recently CIs. They too will learn to accept stem cells for it's wonderful ability to let you hear sounds and speech.

5. Reduce tinnitus

Since tinnitus is very often associated with hearing loss, restoring your hearing even in part will also reduce your tinnitus. Ive read of people that find their tinnitus more annoying than their hearing loss and would trade away the rest of their hearing if they could live in peace without any tinnitus. With stem cells, they get to restore their hearing and reduce tinnitus! Cochlear implants have been known to make tinnitus worse!

6. Reduce recruitment

All deaf/HOH people experience recruitment where amplified sounds can quickly become too loud. Hearing people don't have this problem. Cochlear implants can also get around recruitment but not as well as actually restoring your natural hearing. I know people who still experience discomfort with loud sounds and are forced to turn their maps down. Their ability to hear decreases as well.

7. Best hearing

There is no argument that stem cells gives the best possible hearing. For those unhappy with how poorly they hear with powerful HAs and are considering a CI, they know that stem cells can do way better. After all, CI is just a tool like HAs but only stem cells is a cure. Even those who don't want to be cured of their deafness and become hearing, they can get a lower dose of stem cells and become less deaf. They will then hear better than CI with the right HAs programmed correctly and even if not, they can always get more stem cells! Cochlear implants gives aided hearing comparable to what a severely deaf person gets with HAs. I hear worse(not in the lows though) than what most hear with CI since im profoundly deaf(at 500Hz and above) but this will change when I get stem cells and ill hear better than almost all CI users. When I get stem cells a 2nd time, no CI in the world will even come close.

8. Waterproof

This is another huge advantage for stem cells that no CI(except for the rare totally internal CI) or even HA(I did read of a waterproof CIC HA, but won't help the deaf) can achieve. When I shower, my hair needs 2 hours to dry so I can't wear HAs during that time. When I prespire, I must remove HAs or risk ruining them. I have to stay out of the rain and other wet situations unless I remove my HAs then of course I hear nothing. I would love to experience swimming(pool, lake, ocean, waterpark) and showering with sounds! It would be so surreal!

9. Convenience

I won't have to deal with any of the hassles of HAs, you won't have to deal with CIs. People get lasik, prk, intacs, iols so they can reduce or even eliminate their dependency on glasses. The same will be said for stem cells to reduce or even eliminate dependency on hearing aids! I like HAs because they give me access to sounds but I won't miss them when I am hearing. No worries about feedback, molds, discomfort, changing batteries, repair, avoiding water, etc. Just pure, natural unaided hearing! CIs are just as inconvenient as HAs if not more so. The batteries only last a day or two, the processor is larger, heavier, more fragile. There's a cord and magnet to deal with as well. I often go without HAs when im alone because it's so much more convenient. I only wish I could hear some sounds without HAs! Those of you with more residual hearing than me are so lucky!

10. Reliablity

Face it, HAs and CIs are subject to failure or glitches. Of course stem cells won't prevent hearing loss but as long as you avoid loud noises and stay healthy, your hearing will remain and last way longer than your HAs or CI. I have had to get my HAs repaired about once every 3 years on average. For most people, their hearing lasts a lifetime with only the usual high frequency loss due to presbycusis. They can get stem cells for that when stem cell technology is mature.

Disadvantages of stem cells:

1. Blissful silence

That's about the only real disadvantage. You will be hearing 24/7 if you choose a full restoration of your hearing(25db or better) I was just thinking that alot of deaf people would go for a partial restoration and become less deaf. They would hear with powerful HAs better than CI for cheaper and less risk, yet still enjoy silence without HAs! Initially, stem cells won't be able to restore hearing in full but will be able to several years later. CI will be phased out so for the deaf who were looking to CI to hear more, they can go ahead and get stem cells or just live with what little residual hearing they have. That's your choice and I respect this, just respect my choice to improve my hearing as much as possible and I choose stem cells because it's so much better than CI.

I may get stem cells 2 or 3 times depending on the cost and extent of improvement. The first time, I expect at least 20db improvement but may achieve 40db. The second time, I would prefer to get down to normal or near normal hearing. If I end up with near normal hearing, say 35db loss I may decide not to get stem cells a 3rd time since any further improvement would be small and not worth the $20,000+ cost when for $2000 I can get mini open fit HAs that will aid me to 0-10db HL. I won't need HAs but wear them whenever I feel like and I can turn the HAs off to make very loud sounds much softer. I will decide when that time comes. For now, I have decided that ill get stem cells and can decide later if I want a repeat when stem cell technology matures.

2. Deaf culture

The Deaf fear the loss of their culture. They could get stem cells to be less deaf and not have to experience any of the disadvantages they can come up with. Cochlear implants didn't destroy their culture, stem cells might not either. There may be less deaf people since stem cells will be very popular for deaf babies born to hearing parents. Itll also be popular for late deafened adults and for the "oral only" deaf like me.

3. Few year wait

Stem cells is highly experimental today with only a few anecdotal reports. This "disadvantage" will go away after a few years. Those who are against hearing restoration which includes most Deaf people today say the wait is 20, 30, 40+ years or even that we might never live long enough to experience any restoration of our hearing. Guess what? It's already happening! My friend knows someone who got a 25db improvement in his hearing at a clinic in Costa Rica. Human clinical trials on children/babies under 18 months has begun! My friend says give it 6 months before we see human adult clinical trials and he will be a pioneer, getting stem cells first chance he gets. I will get stem cells after I see it on the news and read testimonals from the pioneers who are among the first, ill be right after those guys.

The saying goes "the time to hear is now" but keep in mind that those with CI may have to wait a decade longer before stem cells becomes advanced enough to repair the damage that CI causes. For one, you kiss your residual hearing bye. A 40db improvement for someone with an infinite loss might get you to 90db loss. But if you kept your 90db loss, you could be enjoying a 50db loss! The electricity CI uses can cause cochlea scarring gradually. Some fluid is removed from the cochlea to make room for the electrodes. Id rather just skip CI and wait 5 years for stem cells than get CI and have to wait 15 years for stem cells, but the choice is yours. Thanks for reading and feel free to ask questions or comment.


Hearing regeneration with pills? They project 2010 as the year for human clinical trials! This could present another option besides stem cells!

Sunday, August 16, 2009

Stem cells for deafness begins human trials? Great news!

Check this website!

Center Announces Hearing Loss Study

CBR is collaborating with three leading medical institutions to initiate a clinical study within the next few months that will evaluate the use of a child's own newborn stem cells to treat hearing loss caused by an accident or severe illness.


My friend says clinical trials are being planned or may already be underway to treat hearing loss and other conditions in children using their own cord blood. Adult trials could occur next year, according to him. He already applied to be on the list and wants to be a pioneer for the first adult human deaf clinical trials. I give it 3-5 years. The wait is not so long, certainly not "decades" like some experts say to appease the Deaf who would oppose everything that treats hearing loss.

Stem cells is already being used for dozens of different diseases/conditions of which hearing loss is one of them. He wanted a cochlear implant but after learning that a hearing loss treatment is around the corner, he canceled the CI appointment and is going to wait for the real thing. He says if he isn't accepted to a clinical trial, he will just travel and get it done in another country. He's sick and tired of being deaf and not hearing good enough with HAs.

Hes currently emailing doctors and scientists for additional information and when they will perform their own trials. Adult trials will either use cord blood stem cells(making sure it's a good match) or your own adult stem cells which can be harvested from your skin/blood. Countries like China have been treating deafness/hearing loss for over a year now. The improvement is supposed to be on the order of 20-30db today but this will increase as stem cell technology matures. Ultimately normal hearing of 25db or better will be attained.

He told me that cochlear implants will be obsolete shortly after we hear news all over of success with hearing loss stem cells. He says those who got CI recently will be furious/irate that they didn't wait just a little longer. He also says that a CI damages/destroys all your residual hearing and other parts of the cochlea making your chances of ever being able to benefit from stem cells in the implanted ear poor. He's recommending anyone with residual hearing to save their ears and have a little patience for stem cells.

We also talked about it becomming mandatory for all deaf/hoh babies to get their hearing loss treated once stem cell technology is mature, could be 20 years from now. Just about all hearing parents will be more than happy to have their baby be hearing. Some deaf parents may oppose this which is selfish and unfair when such a safe, easy treatment is available.

There are so many advantages to stem cells over cochlear implants that it's worth the 3-5 year wait. He says itll be just a year. The cost will be perhaps $15,000 for both ears, the risks will be much less and the rewards much greater. He also believes that while todays stem cell technology can partially restore your hearing, in the near future youll be able to fully restore your hearing. I say this remains to be seen, it's a question of when, not if. But he knows about realistic expectations and we would be very happy to achieve a 20db improvement initally and later on achieve further improvements as stem cell technology matures.

Imagine that today is the year 2012 and that stem cells is being done on humans with great results. A such example would be something as shown below(see audiograms) from what we know so far. We know very little and still don't have a real answer on the date and such but im hearing from a growing number of people and the number of anecdotes is rapidly increasing. At this point, it is almost certain that before 2020 we will see large numbers of people getting stem cells. The wait is on the order of a few years, not decades! My parents are very excited for me and my dad will help me afford stem cells, including making the trip to another country if I can't get into a clinical trial in America.

This person wishes to hear better. Even with max gains(Deafdude: Max gains improved my speech by 20%!) on his HAs, his hearing still isn't that great. His unaided audiogram is very similar to mine and is typical for profound losses. Aided he hears great in the lows(Deafdude:  That's one reason I skipped CI) but it takes a nosedive above 500Hz in both quantity and quality. His mid frequency hearing, like mine is very poor and his highs are nonexistant. He is glad he saved both ears for stem cells instead of destroying/wasting it with CI.(Deafdude: I am not against CI if you already have no residual hearing to risk)  His old audiologist had recommended he wait a few years for stem cells and that a CI would probably disqualify you from being able to get stem cells for many reasons. The audiologist also pointed out that CI will soon be obsolete and no longer manufactored nor supported. 

He got the stem cell treatment and begin to improve. He is so glad he resisted the temptation for CI and saved his residual hearing in both ears. Some of his friends got CI and are happy with CI(Deafdude: I give CI the credit it deserves for those with no residual hearing) but won't be able to benefit from stem cells in the implanted ear.(Deafdude: More and more of my friends are skipping CI for stem cells) When all the hair cells have settled down in their new home in his cochlea, he noticed a very drastic improvement(Deafdude: A realistic improvement is 20db) in both unaided and aided hearing with the same HAs he had prior to the treatment. His HAs were reprogrammed with less than max gains in the lows as not to overamplify.(Deafdude: HAs can't give better than baseline of 0db HL)  He hears better than CI at 1000Hz and below. His speech score is almost as good as those with CI!  He can still attain further improvement so he will return when stem cell technology matures.

True to his word, he returned about three years later and achieved another huge improvement even though there's diminishing returns in the lows. He knows that stem cells can't give him normal unaided hearing. Even chickens/birds with their amazing natural ability to regrow hair cells still end up with a mild hearing loss! Given the fact he finds high frequencies annoying(Deafdude: My hearing friends and family cover their ears) and that very little sounds/speech takes place above 2000Hz(Deafdude: As I learned from my dad and others) and also the fact he hears way better than the now obsolete cochlear implant technology, he is leaving well enough alone on his doctor's advice. Getting more hair cells would not achieve much, if anything and risk hearing worse in the lows due to overcrowding. Too many hair cells living in your cochlea is as bad as too few!