Saturday, June 20, 2009

Some answers thus far about stem cells for the deaf!

My friend Dennis went to the HLAA and he was kind enough to provide some answers while chatting with me. He was too tired and busy to post the answers right now but will do so in the next few days. I am posting what answers he gave me so far.

He says the 3 doctors don't know for sure on the timeframe but they say 25-50 years just to shut people up who keep nagging the docs and to please those people who secretly hope that stem cells for the deaf does not happen "soon" or even in their lives. I talked to another friend who agrees with me that culturally Deaf people fear that any treatment/cure would destroy their culture so they are hoping everyone stays deaf as long as they live.

The docs did say that testing is currently done on mice and chickens and will move on to monkeys. They said: monkeys are next within the next 5-10 years
human trials take a minimum of 7-15 years. So yea most of us will be alive when the time comes. We will learn alot more before 2020 when trials begin on monkeys. Right now enough is known that deafness can be treated someday.

It's too early to know how many DB improvement, the doctors couldn't even answer that one. However it's known that chickens which can regenerate their own hair cells still end up mildly HOH(25-40db HL) after they are deafened with ototoxic drugs. The new hair cells which were regenerated by chickens are of lesser quality and fewer in quantity than original hair cells. I personally am going to realistically expect a 20db improvement. It will take a very long time before technology can restore profoundly deaf people to normal hearing(maximum 25db HL) but a partial restoration alone is great, youll be able to benefit from HAs again or benefit much more.

There's actually 3 different methods currently being researched. One is "implantation" of stem cells, two is "turn off the stop growing triggers" the third is to try to get support cells to turn into hair cells when hair cells die off. Ill find out more on the other methods soon. It's possible one or more of those methods could be used in humans before stem cells.

I would give it at least 10 years before one or more methods to restore some hearing to the deaf is ready for human clinical trials. In the meantime, there's powerful HAs out there and for those with no residual hearing, there's CI. You can read my previous posts to learn more about HAs and CI.

*update!* HLAA links with PDF answers! 

Friday, June 19, 2009
9 a.m. - Noon: Research Symposium, An Update On the Latest Hair Cell Regeneration Research

Cochlear Regeneration: A treatment for severe hearing loss in our lifetime?

George Gates, M.D.

Hair Cell Regeneration-Where Are We & How Did We Get Here?

Douglas Cotanche, Ph.D.

Can We Regenerate the Mammalian Audtory System?

Neil Segil, Ph.D.

Vestibular System Reconstruction

Hinrich Staecker, M.D., Ph.D.

Tuesday, June 16, 2009

I got 75% correct for online sentence matrix hearing test!

Take the online sentence matrix test!

65db loudness as measured with SPL meter
male voice
normal speed
no noise
25 sentences

Scored 72%. First time I got a 63% with 10 sentences. Score about 5% less with female voice. Score around 40% with some noise and 25%(chance) with lots of noise. Is this considered a fairly decent score? What did you score and under what settings? Do any of you have a link to other online speech tests?

I tried again, same settings but 10 sentences. No repeats and got 73%

***The above results were from March. I took it again in June and scored 75% consistently with male voice, normal speed, 10 sentences, repeats allowed***

Sunday, June 14, 2009

Good questions one should ask about stem cells for the deaf.

Someone and perhaps others are going to the HLAA where the topic is “An Update on the Latest Hair Cell Regeneration Research." 

I have several questions id like to forward to the experts. I live out of state and therefore can't afford the long trip, but those attending could forward my questions as well as come with their own. The questions will of course be about stem cells and any other methods that can treat deafness and restore some unaided hearing.

1. Alot of us are very curious on any educated estimates on when stem cells will begin human clinical trials. Reading around puts the estimate at around 10 years from now or near 2020. What about trials on larger animals than mice, such as rabbits, cats, dogs, apes, etc? As for human clinical trials, how does one get in and do they pay full costs or get a discount for contributing/participating in valuable research?

2. Another thing of particular interest is the extent of improvement one can realistically expect. What would be the requirements of candidacy and how will the degree of hearing loss affect the degree of improvement? To what hearing level is realistic, how much of a hearing loss will one have afterwards? How many DB improvement is expected and will the improvement start first in the low frequencies? 90% of audiograms are sloping with the best hearing in the lows. Can the procedure simply be repeated to achieve additional improvement or is it a one chance deal where you are stuck(at least for a while) with whatever you get?

3. What are the estimated costs, how much cheaper will it be than CI? How will insurance factor in? Will it be affordable for the middle class or just the rich?

4. What risks are expected? Do the risks extend beyond the ear and hearing? Is it expected to be safer than CI? Is all existing residual hearing preserved with stem cells, meaning there's no "two steps ahead, one step back" problem?

5. What will happen to those who have a CI(or two) how much will this complicate stem cells and how will it affect the results? I have concerns about this and it's one reason I am saving both ears as I want the best possible results by keeping my ears intact and preserving all residual hearing. Some of us are also concerned that support for CI will rapidly become nonexistant once people start getting stem cells. Will CI become obsolete shortly afterwards?

If I have more questions, I will ask them here. Id like to know where I can find CC(close captions) videos of this upcomming seminar as well as review previous seminars?

Tuesday, June 9, 2009

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

I talked to someone who has some knowlege on this. He said to expect human clinical trials in 2015-2020 timeframe. Give it another 5 years after that for FDA approval. He says it's a question of when, not if. I read articles that state clinical trials for stem cells to treat some forms of blindness will begin in 2011. So it's logical to believe that we will see such clinical trials for deafness a few years after. Certainly not 50-100 years like some Deaf people would like to believe.

I also asked him about the fate of CIs and he says CIs will be obsolete when the real thing becomes available. Itll be a third the $50k cost of CI, safer, better, natural and very popular. Most hearing parents of deaf babies will give them stem cells to improve their hearing. The CI companies will either go out of business or start offering stem cell treatments.

I then asked him what about all those with CIs, he says they will still be able to get stem cells and won't need their CI anymore. I asked him wouldn't results be better on virgin ears that still have residual hearing? He doesn't know that one. However from sources I read, they believe it's better to save your ears for stem cells. Itll be easier to improve hearing when you have existing residual hearing than to start from scratch with none.

He says it's too early to determine what role insurance will have in this. Im guessing insurance will pay for those who are deaf while those who are HOH will need to save up. If insurance considers stem cells for deafness an elective procedure, I will pay out of pocket and dad will help me afford it. I was raised 100% oral and my parents would love to help me hear better. They have been training my ability to understand sounds and speech since I was a baby.

We both know that HAs, CI and stem cells are an individual choice. I will respect other's choice in return that they respect my choice to hear better with stem cells. He did tell me and I fully understand that deaf treatment will be controveral just like CIs once were but are almost fully accepted today except when forced on babies. He says culturally Deaf fear that stem cells will eradicate their way of life. Well, they don't have to seek a treatment for their own deafness. Im sure there will be some born deaf or late deafened who choose to be that way and join the Deaf culture. 

For those of us who choose stem cell treatment, I am going to be realistic by asking for a 20db improvement. When that techology starts out, expect a partial improvement. Perhaps in another 10 years the technology will be mature enough to get many people to normal hearing, as defined of 25db or better. No one yet knows the extent of improvement and we may not know till human clinical trials begin. But don't expect normal hearing for a while. Even when it was done on animals, they were still hard of hearing but no longer profoundly deaf.

Those who were born profoundly deaf and never heard a sound in their lives will definately not be interested. I know a blind person who was born that way and that person does not wish to be cured or to ever see. That person does not miss what was never seen. I never heard much in the way of high frequencies and probably never heard above 3000Hz. What little high frequency hearing I had when I was younger is gone, today I don't hear much above 1000Hz. I have made a post about high frequencies not being very important.

I talked to another one of my friends and he agrees with me. He says the highs(2000Hz and up) are annoying and sound like a shrill squeaky sound that gets squeakier as the pitch increases. It has an "eeeee" sound quality. My dad says anything above 2000Hz is just useless noise. It makes me wonder why some are so obsessed/desperate to hear the highs. One of my friends with a CI who now hears the highs says I really am not missing out on much.

With that said, id much rather hear unaided and improve the lows but ill be fine with satisfying my curiousity on what high frequencies *really* sound if I happen to get some ability to hear highs after stem cells. I hear unaided at 65db HL at 250Hz so perhaps ill be down to 45-50db at that frequency. I wonder how much people with this moderate HL hear unaided.