Hey there deafdude, I don't really see an anti-stem cell crowd here.
I do, read around and youll see too. They are bashing stem cells and saying it won't work. Also their response to me getting stem cells is negetive, such as "I don't think it'll work, you are wasting your money." "Why do you want stem cells? Accept your deafness" "stem cells is wrong and bad things will happen to you" I find all those disrespectful and feel they are attempting to talk me out of stem cells. Please back off, anti-stem cells and let me make my choice. If stem cells doesn't work for me, then be it. I lose nothing except several thousand dollars. I have done my research and been in contact with a few stem cell labs, including the one that treated Chloe. Do the same first then you can get back to me.
There are no guarantees in *any* type of medicine or surgery, including CI. For example, I have no interest in laser eye surgery because if it doesn't work, my eyes are ruined. I however am interested in Intacs(based on contact len tech) because if those don't work, they can be removed similar to contact lenses. I will only risk something that is either reversable or causes no permanent effects if it doesn't work.
Hair cell regeneration therapy is not yet available to the deaf in the US in an FDA-approved form right now, nor expected to be here within the next couple of years.
I am not waiting 10-15 years for the USA to FDA approve stem cells. I know the USA is years behind no thanks to Bush and the anti-stem cell crowd. I am traveling to another country where they are treating the deaf today.
I haven't seen anyone claim it will never be a treatment available to us or that anyone would choose surgery over a less invasive but equally (or more) beneficial approach to providing hearing.
I know plenty who are choosing CI or have chosen CI over stem cells. Almost all of them are against stem cells. A few others don't know they can get stem cells now or refuse to believe so. I respect their choice to CI and all I ask is they respect my choice to stem cells. My blog explains in depth the advantages of stem cells over CI.
I think hair cell regeneration will be amazing -- someday. Our ci surgeon was deeply involved in research into hair cell regeneration and is very positive about its benefits -- in 10-15 years. He said that the timetable is very hard to nail down, so this is just his guess based on what we know today.
Show him the news about Chloe getting stem cells and being able to hear without HAs! He can also contact the stem cell labs in other countries outside America who can confirm that they have successfully treated a few for deafness and are treating many more who are signing up.
He explained (last year) that they think the first rounds of treatment for hearing loss will be available to those talking part in trials, in about 4-5 years, and its expected that it will provide some access to sound that approximates the early CIs
I was already hearing similar to early CIs(before year 2000) with HAs with a severe-profound HL. In 1998, I had 100db HL unaided, 35db HL with HAs(my audiologist did max the gains) and I could understand 50% speech according to my parents. I could hear all kinds of environmental sounds, including whistles and birds. Now my hearing loss is 110db+ at 750Hz and up so I really only benefit at 500Hz and below where I still have plenty of usable hearing. I am surprised that those with much more usable hearing than me have gotten CI. Some of them have so much hearing that I wish I had their hearing. My audiologist said if I had 20db more hearing, id understand alot of speech with HAs.
And in another 5 - 10 years researchers should be able to at least match contemporary CI technology. And then ... hopefully ... no more CI surgery for most people!
Today's stem cells can already outperform CI. Chloe can hear 90% of normal and doesn't even need HAs! I only need a 30db improvement in my hearing to outperform today's CI with my HAs. The stem cell labs are talking about a 20db average improvement each stem cell treatment and you can get treatments as often as every month! Well Chloe got 3 treatments spaced 5-7 days apart to save on the cost of return trips, but it still worked out well. No need for CI surgery, but for those who still want CI, you are entitled to your choice.
There's been a great deal of excitement about its uses for so many treatments, and I certainly hope that hair cell regeneration becomes widely successful and possible and my daughter will benefit from treatment someday. We're just not willing to lose 15 critical years of access to sound and the capacity for spoken language development while waiting.
I
still don't understand why she couldn't get into the speech banana with modern HAs. You explained part of this, I replied back in that thread. I had about 10db worse hearing than she had and I did great with HAs of the past. I was able to get into the speech banana with older HAs and a worse loss than your daughter. Let me show you my 1998 audiogram:
Note the A symbol at 35db HL and my unaided at 100db for the speech frequencies. I would have heard much better if the HAs I wear today were available in 1998 or if my hearing didn't get worse from 1998. Id be hearing at 15-25db in the lower frequencies and transposition would get my highs down to the mids which with 70db gain, would aid a 100db HL to 30db. Id hear at 15-30db across the audiogram with transposition. My speech understanding would not quite be the same as a hearing person, however. It would be way too high to qualify for a CI, however.
I am
happy for those who do well with CI, although it makes no sense for those who benefit(or could) from HAs to take the risk for CI. I did well with 50% speech understanding with HAs and have saved both ears for stem cells which im getting soon. Any children I have, they will stick with HAs till they can get stem cells. I am a huge fan of HAs and understand the sheer power behind them and how much they can do! But like I said, if you still want CI instead of sticking with HAs or getting stem cells, it's your choice!
Furthermore, you asked some questions in someone's blog. I answered them there and also here:
1. I have been in contact with a few stem cell centers, including the one that treated Chloe. No surgery or lasers. Just an IV to arm. They can make a small incision and implant the cells directly in your cochlea but don't recommend this 2nd option.
2. Any future CI technology does not interest me as I am getting stem cells soon. We have seen Chloe become hearing without HAs!
3. The stem cell centers ive been in contact can't and won't consider anyone with CI a candidate for stem cells. Ive also learned that those with a CI may require regrowing a new cochlea(a 20+ year wait) Animal studies have shown that damage to the cochlea similar to what CI does causes stem cells to be unable to give any real improvement.
4. The USA is years behind due to Bush and his anti-stem cell crowd. Other countries are offering stem cells today and dozens of people are getting it for hearing loss. I would only need to get to about 80db HL after stem cells to match today's CI. I should be able to hear at the 10-20db level with my HAs offering maximum amplification of about/around 70db in the speech frequencies.(80db HL with 70db gain=10db aided with HAs) Todays stem cells offer an average improvement of 20db per treatment and Nepsis can give me a treatment once a month. We have seen Chloe's amazing results. I have seen other results that were still as good or better than today's CI.
5. The downside to CI is why I am choosing stem cells over CI. If stem cells don't work, the only thing I have to lose is several thousand dollars.
Thanks for reading my long reply, so much we can learn!
Just thought I’d weigh in on this debate..
