Stem cell available in Kansas City

Oops

Before you break out the flame throwers, I wish to apologize to any person that I may have insulted by my somewhat stupid previous post. I did not mean to be insensitive to others by posting my problems. I realized after posting that there are other people who are in far worse shape than I and my wife.

Please accept my humble apology
Oldbob
 
Before you break out the flame throwers, I wish to apologize to any person that I may have insulted by my somewhat stupid previous post. I did not mean to be insensitive to others by posting my problems. I realized after posting that there are other people who are in far worse shape than I and my wife.

Please accept my humble apology
Oldbob

I am one of them. But remember the proper AD way, depending on how dedicated you are, is just to fight on. Never apologize. Assume you are correct from the start.

We love you oldbob.
 
This is why im listening to stem cell labs instead of you. They are the experts and know way more about stem cells than even me. No offense but I suggest you research stem cells. Youll know that embryonic stem cells are never used, only adult(and cord blood) stem cells. If you research on Google, youll understand what adult(and cord blood) stem cells can do NOW and why people like me are interested
FYI,
ADULT stem cell treatment have been around for quite a while. It's nothing new. Why do you have it stuck in your head that it's going to treat/cure hearing loss?
There have been SOME cases of stem cell treatments curing/treating hearing loss, but virtually all of those cases were caused by autoimminune disorders. There's no evidence that stem cells will be able to treat hearing loss in general.
Yes, if your hearing loss is caused by diabetes or MS or whatever it will be able to be treated........but there's no evidence that it will be able to treat non autoimminue caused hearing loss.
 
FYI,
ADULT stem cell treatment have been around for quite a while. It's nothing new. Why do you have it stuck in your head that it's going to treat/cure hearing loss?
There have been SOME cases of stem cell treatments curing/treating hearing loss, but virtually all of those cases were caused by autoimminune disorders. There's no evidence that stem cells will be able to treat hearing loss in general.
Yes, if your hearing loss is caused by diabetes or MS or whatever it will be able to be treated........but there's no evidence that it will be able to treat non autoimminue caused hearing loss.

Do you have a link or articles that discuss that?

When it comes to adult stem cells, or any stem cells at this point, never say never when it comes to treating a variety of conditions and maladies.

History of stem cells
Stem Cell History
 
First of all, we all KNOW that stem cell has potential, whether it be adult or embyroic. We don't doubt it at all. We are SUPPORTING the research of stem cell technology in any form. We already showed evidence with stem cells repairing damaged parts of hearts.... and we expect more exciting results as well.

What we don't like is how some clinics are promoting stem cell therapies when FDA has not approved them yet. If they position themselves as researchers then they have to follow strict guidelines on treating people. They cannot make claims about them when it's not proven yet or FDA approved.

Also, we must be careful with the stem cell technology and how we should proirotize for patients. Those who are dying of cancer would definitely benefit from it even if they will likely get cancer from the treatment itself because without it, they would be dead.

Deafness is not life threatenging so we would be less interested to treat them, we're more interested in helping the damaged heart repair its damage and also regenerate brain cells. I would rather have my heart fixed with stem cell technology than to have my hearing fixed.

It's a risk that people are willing to take and I admire their courage. I wish them nothing but best.
 
Yes, stem cell has the potential......but right now it's only been proven to work on conditions that are autoimmune. You have heard of bone marrow transplants I take it? Those are stem cells!
 
Hey all long time :) Just thought I’d weigh in on this debate..

What we don't like is how some clinics are promoting stem cell therapies when FDA has not approved them yet. If they position themselves as researchers then they have to follow strict guidelines on treating people. They cannot make claims about them when it's not proven yet or FDA approved.

You point here is understandable but ultimately irrelevant you don’t like the fact that some clinics are successfully treating people with deafness because the FDA has not approved it? (ie RNL Chloe Sohl) or that they are claiming to be able to treat deafness? We apparently they can and have.

It is true that some clinics maybe scams but their no different than others scams, diligent research and proper preparation can avoid such problems. At the end of the day stem cell treatment is available NOW at the pioneer level there have been positive results for other disorders as well as deafness.

The US researchers you talk about will A) benefit from the results of some of these treatments, and B) their work should not be affected by treatment done by non US clinics for deafness. I have not heard of stem cells completely curing deafness, but there have been significant improvements (i.e. from complete deafness to 50db)

Also, we must be careful with the stem cell technology and how we should proirotize for patients. Those who are dying of cancer would definitely benefit from it even if they will likely get cancer from the treatment itself because without it, they would be dead.

Why?
If it is possible to have one group focus on cancer patients, and another on deafness and another on MS etc. further people are willing to take the risk to alleviate a life changing disorder. What is the problem? Are you saying the world should stop focussing on stem treatments for non life treating disorders? That would be a step backwards for science and realistically...is not going to happen.

Deafness is not life threatening so we would be less interested to treat them, we're more interested in helping the damaged heart repair its damage and also regenerate brain cells. I would rather have my heart fixed with stem cell technology than to have my hearing fixed.
Your opinion is noted. But objectively speaking if you could have both repaired would you? My point is its not one or the other you can have BOTH!

It's a risk that people are willing to take and I admire their courage. I wish them nothing but best.
Deciding to be a pioneer for any stem cell therapy is not a easy choice, for it has unknown risk however with stem cells the KNOWN risks are limited especially if the cells come from the patient’s own body.
Yes, stem cell has the potential......but right now it's only been proven to work on conditions that are autoimmune
Erm..Autoimmune or not hair cells were regenerated using stem cells and hearing was restored to varying degrees.

I believe 2010 will be a big year for stem cells and deafness a few more pioneers will establish that stem cells can treat deafness.

BTW i already know my English is horrible :p
 
Erm..Autoimmune or not hair cells were regenerated using stem cells and hearing was restored to varying degrees.

"Erm" is certainly an asinine American teenager way to insult people's intelligence. So yours may be better than you think.

As for autoimmune loss, it responds to lots of things, including steroids.
 
Hey all long time :) Just thought I’d weigh in on this debate..



You point here is understandable but ultimately irrelevant you don’t like the fact that some clinics are successfully treating people with deafness because the FDA has not approved it? (ie RNL Chloe Sohl) or that they are claiming to be able to treat deafness? We apparently they can and have.

It is true that some clinics maybe scams but their no different than others scams, diligent research and proper preparation can avoid such problems. At the end of the day stem cell treatment is available NOW at the pioneer level there have been positive results for other disorders as well as deafness.

The US researchers you talk about will A) benefit from the results of some of these treatments, and B) their work should not be affected by treatment done by non US clinics for deafness. I have not heard of stem cells completely curing deafness, but there have been significant improvements (i.e. from complete deafness to 50db)



Why?
If it is possible to have one group focus on cancer patients, and another on deafness and another on MS etc. further people are willing to take the risk to alleviate a life changing disorder. What is the problem? Are you saying the world should stop focussing on stem treatments for non life treating disorders? That would be a step backwards for science and realistically...is not going to happen.


Your opinion is noted. But objectively speaking if you could have both repaired would you? My point is its not one or the other you can have BOTH!


Deciding to be a pioneer for any stem cell therapy is not a easy choice, for it has unknown risk however with stem cells the KNOWN risks are limited especially if the cells come from the patient’s own body.

Erm..Autoimmune or not hair cells were regenerated using stem cells and hearing was restored to varying degrees.

I believe 2010 will be a big year for stem cells and deafness a few more pioneers will establish that stem cells can treat deafness.

BTW i already know my English is horrible :p

Make sure know first thoughts
 
You point here is understandable but ultimately irrelevant you don’t like the fact that some clinics are successfully treating people with deafness because the FDA has not approved it? (ie RNL Chloe Sohl) or that they are claiming to be able to treat deafness? We apparently they can and have.
Sigh..........No. He simply is saying that it still has not passed peer review yet.
Also, ancedote is not the plural of data! One person may have recovered her hearing.......but what about everyone else? It's intreging yes..........but there's still a ton of research to be done.
 
Don't know about FDA guide lines, but without HA's I CHS. The guide lines for Medicare are 40% and I am at 41%. I guess it all depends on which apples or oranges u use. Right now I can get along fairly well depending on the environment. Between ma and me we spend more time at the doctors and hospitals than at home. In the last 5 yrs ma has had rotor cuff surgery on both shoulders, and both knees replaced. I have had my ankle fused and Appendix removed and Cadillac surgery both eyes. Add to that the time spent in rehab. Just kind of sick of going to doctors. Depending on how ObamaCare goes, we could be looking at much reduced medical care.

Do you have any audiograms you can scan? Do you know what types of speech tests they gave you? Were they saying single words or sentences?

Cochlear Implants: Frequently Asked Questions: Health Topics: University of Iowa Health Care

If a person does not understand 40 percent of sentence material with an appropriate hearing aid or 50 percent in the other ear, then that person would be a candidate for an implant. We usually test word understanding with single words and that is called speech discrimination testing. If someone understands less than 20 percent of single words, that person would be a candidate for a cochlear implant.

My comment: Could they have mixed up single words with sentences for you? If your 68% aided score was with single words, you are very lucky not to get CI as you would have heard worse with CI than HA. On another note, what's your reasons for not wanting stem cells? Didn't get an answer to that yet, just wondering.

You point here is understandable but ultimately irrelevant you don’t like the fact that some clinics are successfully treating people with deafness because the FDA has not approved it? (ie RNL Chloe Sohl) or that they are claiming to be able to treat deafness? We apparently they can and have.

To get stem cells, you have to travel outside America.

It is true that some clinics maybe scams but their no different than others scams, diligent research and proper preparation can avoid such problems. At the end of the day stem cell treatment is available NOW at the pioneer level there have been positive results for other disorders as well as deafness.

agreed!

I have not heard of stem cells completely curing deafness, but there have been significant improvements (i.e. from complete deafness to 50db)

Chloe can hear without HAs, her good ear is at 90% of normal. She isn't considered deaf anymore. I have no idea how much stem cells will improve my hearing, but I could very well be HOH and not deaf with stem cells.

If it is possible to have one group focus on cancer patients, and another on deafness and another on MS etc. further people are willing to take the risk to alleviate a life changing disorder. What is the problem? Are you saying the world should stop focussing on stem treatments for non life treating disorders? That would be a step backwards for science and realistically...is not going to happen.

People even take risks for laser eye surgery. I don't want lasik as I see fine with glasses. I don't hear that well even with the best HAs so I am willing to risk(which isn't much) stem cells for better hearing.

Deciding to be a pioneer for any stem cell therapy is not a easy choice, for it has unknown risk however with stem cells the KNOWN risks are limited especially if the cells come from the patient’s own body.

I am not worried about the risks of adult(including cord blood) stem cells. If people are willing to risk CI, I certainly am willing to risk stem cells which is vastly safer. I have already done my research so I know!

Erm..Autoimmune or not hair cells were regenerated using stem cells and hearing was restored to varying degrees.

The anti-stem cell crowd are still full of excuses. Stem cells can treat SNHL, period! It doesn't have to be autoimmune! People who were born blind due to genes or became blind due to injury that had nothing to do with autoimmune disease are seeing significent improvements! Stem cells can treat many other physical and mental injuries that are not related to autoimmune disease! Even healthy(no autoimmune disease!) mice who were deafened with loud sounds or ototoxins achieved a partial restoration of their hearing with stem cells!

They previously said that stem cells will never work on humans(wrong!), now that they see it works on Chloe, they have changed their excuse. They will find some other excuse when more pioneers achieve success with stem cells. Once they run out of excuses, they will just disappear. I am not gonna bother arguing with the anti-stem cell people, ill just say you are entitled to your choice not to get stem cells and I choose stem cells for myself. I know the facts and truth about stem cells and those who aren't against stem cells agree with all this. We have seen how consistantly wrong the anti-stem cell people have been all along.(last year, they said stem cells for deafness was 30 years away, lol) Why should I listen to them? I am listening to the experts and doctors who have actually treated people successfully with stem cells.
 
The anti-stem cell crowd are still full of excuses.

Hey there deafdude, I don't really see an anti-stem cell crowd here. I've just seen people saying that 1. this is a forum for CIs and HAs so please stop bashing CIs in your enthusiasm for another treatment and 2. 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 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 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. 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, 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!

As others have said, stem cell research has been around since the '60's, with amazing leaps in the past decade. 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.

Li-Li's Mom
 
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:

scan5.JPG


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!
 
Hey there deafdude, I don't really see an anti-stem cell crowd here. I've just seen people saying that 1. this is a forum for CIs and HAs so please stop bashing CIs in your enthusiasm for another treatment and 2. 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 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 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. 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, 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!

As others have said, stem cell research has been around since the '60's, with amazing leaps in the past decade. 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.

Li-Li's Mom

:gpost:

Summed it up perfectly.
 
Stem Cell therapies draw my attention 10 years ago. It brings me hopes to hear better.
And I may discuss my thought.
1 Going to China to get the therapy is not my choice. I am a HK citizen, and every year,
there are alternative therapies claiming that they may treat AIDS, Cancers, Deafness etc., and none has been proved effecetive.
2 How to regenerate the inner ear hair is the main issues. The problem is:
the inner ear is a closed area, it is difficult to send enough stem cells there comparing heart mussel, lung etc., . In today's technology, the amount of stem cells we may transport to inner ear area is very limited. Using Virus (harmless) is one direction, but there is
a long road from here.

Unless the researchers solves the point 2, I don't think it is the right time to risk
a bundle of cash.
 
Last edited:
Deafdude,

Right in your audiogram you can see that you aren't aided up to where a CI hears. My daughter's audiologist doesn't let you leave the booth until you are above 30 db in ALL frequencies. You were not there from 2000 hz and above. THAT is why parents get a CI. So that our kids can hear all the speech sounds, not just some.
 
"Erm" is certainly an asinine American teenager way to insult people's intelligence. So yours may be better than you think.
Asinine - Adjective : extremely or utterly foolish.
Thanks for adding to my ever-growing vocabulary, and for the compliment :)
As for autoimmune loss, it responds to lots of things, including steroids.

Oh, I thought in autoimmune loss, the immune system attacked an ear hair cells leading to SNHL..Steroids therefore either reduce or stop the attack but as we ALL know once a human ear, hair cell has been lost its apparently irreplaceable..but wait Chloe case proved that they can be regenerated. Why is there no enthusiasm?

Unless the researchers solves the point 2, I don't think it is the right time to risk
a bundle of cash.

I have already answered your first point in this tread "It is true that some clinics maybe scams but their no different than others scams, diligent research and proper preparation can avoid such problems."

As for your second point, a complete cure at this point is not realistic, but an improvement in HEARING is. That is to say one can reduce their deafness to hear more with stem cells and HA. The main advantage being that it is a natural process. Stem cells tend to migrate towards an injured organ/tissue thus reducing hassle of the stem cells reaching the inner ear, as the case of Chloe Sohl illustrates.

You have a point when you imply that a complete FDA approved cure is safer and better but as deafdude has mentioned treatments like Chloe Shols are available now.
 
Asinine - Adjective : extremely or utterly foolish.
Thanks for adding to my ever-growing vocabulary, and for the compliment :)


Oh, I thought in autoimmune loss, the immune system attacked an ear hair cells leading to SNHL..Steroids therefore either reduce or stop the attack but as we ALL know once a human ear, hair cell has been lost its apparently irreplaceable..but wait Chloe case proved that they can be regenerated. Why is there no enthusiasm?



I have already answered your first point in this tread "It is true that some clinics maybe scams but their no different than others scams, diligent research and proper preparation can avoid such problems."

As for your second point, a complete cure at this point is not realistic, but an improvement in HEARING is. That is to say one can reduce their deafness to hear more with stem cells and HA. The main advantage being that it is a natural process. Stem cells tend to migrate towards an injured organ/tissue thus reducing hassle of the stem cells reaching the inner ear, as the case of Chloe Sohl illustrates.

You have a point when you imply that a complete FDA approved cure is safer and better but as deafdude has mentioned treatments like Chloe Shols are available now.

You are young, and you are making oldbob sad. Are you a stemcell salesperson from overseas?
 
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