I disagree with this CI surgeon predicting stem cells in 15 years

[deafdude1]

Because Chloe's stem cell sucess was due to her having AUTOIMMUNE hearing loss. Autoimmune hearing loss is VERY responsive to treatment.....matter of fact, they can treat it with steroids etc..
How do you know Chloe didn't also have steriod treatment in conjunction with stem cells?
There has been NOTHING in peer reviewed journals.......which is very fishy. It's all about HYPE!
Just b/c one type of hearing loss is responsive to treatment, it doesn't mean that ALL hearing loss is responsive to treatment!

Stem cells can treat other kinds of SNHL besides autoimmune. I spoke with the stem cell center that treated Chloe so I know this, you don't.

http://www.cordonvital.com/ProfesionalesSalud/CB_Research/Reparacion_coclear_oido_interno.html

Mice made deaf by noise and/or ototoxins experienced a drastic improvement in hearing.

Second of all, you have not been in contact with any stem cell centers while I have. The experts can treat my hearing loss with stem cells and they have experience treating animals and humans. You were saying just last year when it was proven to work in animals. "ok so stem cells works in animals, that doesn't mean itll work in humans" Now you have changed your tune and you will change your tune again as more and more humans get improved hearing. I will just say I disagree with everything you say and will listen to the experts over what you say.

I sure noticed deafdude1 is obsessed with the stem cell technology but I don't think he really understands that we all are for stem cell technology (and even those against abortion would support adult stem) but we are STILL a long way from making it a mature technology. There is still a lot of research on stem cell technology and the long term effects are still unknown.

If you want to participate in new stem trial, then great. It's not something I would sacrifice for myself but I am afraid that you're getting shady information from those people. FDA protocols are very strict with how people can be recruited and can be tested.

There is nothing wrong with me being interested in stem cells. Call it an obsession if you want, I call it a desire to hear better. Most people on alldeaf get mad when stem cells are mentioned. I know very well by their attitude towards stem cells they are strongly against it, especially for deafness. I don't need anyone's approval to justify my choice. I decide on my own and I am doing it for myself only.

I know that stem cells is experimental and that we are years, even decades away from this technology becomming mature. Stem cells has been done on animals and humans for a few years now and none have experienced any adverse affects.

"Bone marrow and bone marrow-derived stem and progenitor cells have been used
in scores of animal studies and tens of thousands of transplants in people with
leukemia - without spawning dire diseases. In addition, when the cocktail of stem
cells e.g., MIAMI, multipotent adult progenitors and such that Nepsis scientists and
techs is transformed into the desired cell - say a neuron-like cell or heart cell - the
chances that these cells would become something else or produce cancer is miniscule.
Fat-derived stem cells have been extensively used in animals and humans without
producing cancer or other ills. The same can be said of umbilical cord blood, umbilical
cord stem cells and placental stem cells (Even mismatched cord blood has been shown
to benefit people with certain forms of cancer)."

The FDA's Position

Alot of people are protesting FDA's decision to consider your own stem cells as a drug. I disagree with the FDA there. They can't take our choice away, we will just travel to another country.

deafdude, I doubt that a prominent researcher in the area of hair cell regeneration would lend much credibility to a press release and a Youtube video from an obscure clinic in South Korea whose previous claims to fame were somewhat more veterinary and decidedly commercial:

I understand why he is skeptical, many others are that way. Ill just say that we will be seeing alot more pioneers getting stem cells. The stem cell centers ive contacted say they have several people signed up to get their hearing loss treated today.

If you insist that hair cell regeneration therapy is not only safely, legitimately, and sustainably available today and can provide auditory results that consistently surpass today's CI technology, then if you want to, by all means, please undergo this therapy yourself right now and post your audiograms on your blog, I'd be very interested in what you experience personally, and very much interested in legitimate research. I'm just not at all interested in reading or viewing this type of spam from a dodgy clinic aggressively trying to get investors.

This is exactly what im thinking about and have discussed with my family and the stem cell labs. I have shown my parents all the facts and done my research. When(sooner rather than later) I do decide to go ahead, ill let everyone know my results.

Deafdude1 - What makes you think you are qualified to second guess a PHD? I have asked you this before but you don't respond to the hard questions. What are your qualifications?

I may be getting stem cells at Nepsis and I take them as a source. They are treating people now, not in 15 years.

 

[Lighthouse77]

What do you want out of us?

 

[faire_jour]

So your answer is "because I say so". You have not shown a single fact. It's always "I believe it, so it is true". It's like a 5 year old throwing a fit because someone said there is no Santa. Just because you say it over and over, doesn't make it true. Just because you plug your ears and scream "NO NO NO", doesn't change the truth.

 

[deafdyke]

Mice made deaf by noise and/or ototoxins experienced a drastic improvement in hearing.

So? That doesn't mean it'll work in humans.
And if stem cells have sucessfully treated non autoimmune caused hearing loss, then where are the people who can now hear?
You are simply buying into the PR hype of those clinics. How do you know it's not just a scam? I think if you'd been around in the 70's you'd be yapping that chiropratic (sp?) was gonna be THE CURE for hearing loss. There was a LOT of stuff.....all of it virtually the same as the PR hype for stem cells, but for chiropratic!

 

[netrox]

Deaddude, first of all, I have NO problem with people wanting to be hearing. Of course, those who value Deaf Culture may take an issue with stem cell to treat deafness but that's NOT my point.

My point is that I am not sure about how much progress we've come with the stem cell technology for deafness. We've tried many times with so many ways to treat deafness and we've failed - hearing aids only amplify sounds WHEN you have some residual hearing and CI's are the only FDA approved treatment for deafness with dB loss of 90 or higher. I remember clearly when I was growing up, I'd look for any treatments and stem cell was often mentioned... and to this day, I haven't seen it materialized while they progressed with CI technology.

It will COME to the day when we can finally treat deafness with stem cell technology but it ain't today unfortunately and the sources you cited aren't something I would trust.

I know many Deaf people would take offense to the idea of "wiping out deaf people" with stem cells and that is entirely a different issue - I am talking about the technology we have, not how we apply the technology.

 

[Mrs Bucket]

*snip*

Second of all, you have not been in contact with any stem cell centers while I have. The experts can treat my hearing loss with stem cells and they have experience treating animals and humans. You were saying just last year when it was proven to work in animals. "ok so stem cells works in animals, that doesn't mean itll work in humans" Now you have changed your tune and you will change your tune again as more and more humans get improved hearing. I will just say I disagree with everything you say and will listen to the experts over what you say.

*snip*

This is exactly what im thinking about and have discussed with my family and the stem cell labs. I have shown my parents all the facts and done my research. When(sooner rather than later) I do decide to go ahead, ill let everyone know my results.

*snip*

I may be getting stem cells at Nepsis and I take them as a source. They are treating people now, not in 15 years.

From my observation here...

You are trying hard to recruit our approval on your decision making process as you mention your family several times. It would seem you have met doubt and the same disagreement from your family like you have received from us.

What makes you so sure none of us have not been in touch with any of the stem cell centres? Please refrain from making assumptions. I have a sister who is involved with the industry - HAs, CIs and yes the inner ear.

She is Culturally Deaf and she is involved with helping others hear with what residual hearing they have. My sister is quite the asset her company needs and wants - the Deaf opinion.

Please be careful when you toss out your assumptions about us as a whole. I have a strong suspicion you are stemming from personal experience with your family you need to self-project those issues onto us. This isn't quite healthy and not fair for us too as well.

Counselling will help for this.

I would refrain from making broad and sweeping statements like "I may be getting stem cells" from a company and using their name - Nepsis especially when companies do sweeping checks on the internet. Do you think they would appreciate having such misguided statements coming in from you? To read that you may get stem cells from them when they have yet to give one out to a human being when they are just testing on mice - don't do that.

Nepsis has a disclaimer too as well -

This web site and the information on it is not to be used as a substitute for medical advice, diagnosis or treatment of any health condition or problem. Those who visit this web site should not rely on information provided on it for their own health problems. Any questions regarding your own health should be addressed to your physician or other licensed healthcare provider. Nepsis Institute make no guarantees, warranties or express or implied representations whatsoever with regard to the accuracy, completeness, timeliness, comparative or controversial nature, or usefulness of any information contained or referenced on this Web site. Nepsis Institute do not assume any risk whatsoever for your use of this website or the information posted herein. Health-related information and opinions change frequently and therefore information contained on this Web site may be outdated, incomplete or incorrect. All statements made about products on this website have not been evaluated by the Food and Drug Administration (FDA). Use of this Web site does not create an expressed or implied professional relationship.

Direct from Nepsis website


Something on this website just triggered an internal alarm, my family doctor shares a large central office with other 10 + doctors. They have a website however it is restricted to patients and no patient information is made public.

This website has a testimonials page with patients' names, ages, emails and some phone numbers shown. Kinda fishy on my part. Hubby says in the USA, some are commercialised and some privatized.

All in all, do your research, deafdude. It is needed.

 

[GrendelQ]

Mrs. Bucket's response was very thoughtful and very much on target. I think deafdude1 is neither mean-spirited or out to deceive anyone, just overly enthusiastic and very inquisitive, trying to reconcile his own decision-making with what he sees as flawed decisions made by others out there.

I hate to quash such a bright, optimistic spirit, because I'm sure there will be hair cell regeneration some day, for a lot of people who might want them, but questioning others people's judgment about their choices is very offensive. He may not realize how much CI-bashing he does every time he posts to discredit or invalidate the experiences one of us shares (as in,Li-Li's 15-20db scores are not average for CIs - that would be 50db (!), or with a 90db loss you shouldn't be eligible for a CI). Maybe AD just needs to place a permanent banner on his posts that says "I'm not a doctor, I just play one online."

 

[lovezebras]

I agree....as someone that is looking into CI one day when my hearing is past the 100dB point which isn't very far, I find it very discouraging when deafdude posts negatively on the subject. I don't really care if HE has worse hearing or how he is aided. I know how I want to hear and what I want to hear etc and I don't want his non-professional input. I see him posting on the hearingaidforum as well as deaf123 and he spits the same crap about trying hearing tests online and stuff and asking for others audiograms there as well too ...stop the bs and focus on your own hearing loss..I LOVE to learn about Deaf Culture as well and how my hearing works but if you are that effing interested go take audiology damn it

 

[shel90]

Deafdude, Alicia is right. If you are fascinated with the pathological aspect of hearing loss, why dont you take some classes in audiology and maybe pursue a career in that field. I took graduate level courses in audiology. They were very interesting but too technical for me. lol

 

[OneSided]

delete post

 

[deafdyke]

I think deafdude1 is neither mean-spirited or out to deceive anyone, just overly enthusiastic and very inquisitive, trying to reconcile his own decision-making with what he sees as flawed decisions made by others out there.

Yes. He also seems very naive as to the fact that while stem cells could be a cure/treatment it might also be snakeoil.
It's just too early to say right now. And you know........................I think that most money and research needs to go into finding cures for REAL things like Alizhemier's, mental retardation, learning disabilties, diabetes, depression, scheizophernia etc. Seriously deafdude...............if you have EVER seen the effects that conditions like those have had on people, you'd be thinking the same way I am
There should be research and a search for a cute for non childhood blindness/hearing loss.
I understand 100% that late-blind and late deafened folks are very negatively effected by their hearing loss...................and I used to be. Used to hate being hoh, hated my hearing aids....until I realized that being hoh isn't all that bad.....There are some crappy parts to it.........but it can also be just a part of me, like the fact that I'm gay or like to read or am a hippie.

 

[set2]

Deafdyke,

You have made some excellent points in you last post. I especially agree that money should go to finding cures for mental illness and diabetes because I have seen second hand the effects of diabetes and mental illness.

As a late deafened adult I feel blessed that implants are available and that I have been able to benefit so much from one. Implants are not a cure but WOW! what a difference they can make. It would be nice if those with other conditions could benefit in a similar way from other advances in medicine.

 

[yizuman]

I think medicine needs to be put in research mode until it is definite that whatever applies will not cause harm to anyone in any way shape or form. Most especially it does not violate ethics in medicine (i.e. trading one life for another, cloning, playing god, etc.)

For now if technology is more feasible (again, does not cause harm) other than medicine (if medicine is not safely applicable in one's entire lifetime), then by all means use technology until something else better comes up.

Yiz

 

[Foxrac]

Let vote republican to ban on stem cell so DD will have no choice, lol.

 

[shel90]

Yes. He also seems very naive as to the fact that while stem cells could be a cure/treatment it might also be snakeoil.
It's just too early to say right now. And you know........................I think that most money and research needs to go into finding cures for REAL things like Alizhemier's, mental retardation, learning disabilties, diabetes, depression, scheizophernia etc. Seriously deafdude...............if you have EVER seen the effects that conditions like those have had on people, you'd be thinking the same way I am
There should be research and a search for a cute for non childhood blindness/hearing loss.
I understand 100% that late-blind and late deafened folks are very negatively effected by their hearing loss...................and I used to be. Used to hate being hoh, hated my hearing aids....until I realized that being hoh isn't all that bad.....There are some crappy parts to it.........but it can also be just a part of me, like the fact that I'm gay or like to read or am a hippie.

I agree...I think the money would be better spent on research for real diseases. Deafness is not a disease. :roll:

 

[lovezebras]

I agree deafness isn't that bad and id rather just go with a CI/HA ..i actually like being able to be sound off sometimes

 

[Lissa]

Deafness is not life destroying or serious. You can cope with deafness, be lucky that it is not worse, etc life threatening conditions. i love being soundless at night

 

[deafdyke]

I agree deafness isn't that bad and id rather just go with a CI/HA .

Yes. It's not like we don't have ANY access to sound. The sound provided by a HA/CI is awesome....................and it does seem like a lot of the stem cell hopers are folks who are either very desperate (they were late deafened....and that's 100% completely understandable) or who still haven't come to terms with the fact that they are dhh.

 

[deafdude1]

Deaddude, first of all, I have NO problem with people wanting to be hearing. Of course, those who value Deaf Culture may take an issue with stem cell to treat deafness but that's NOT my point.

I am getting rude comments from the anti stem cell mob, almost all of who are culturally Deaf. They used to be rude to those who wanted CI. Thanks for respecting our choice to be hearing.

My point is that I am not sure about how much progress we've come with the stem cell technology for deafness. We've tried many times with so many ways to treat deafness and we've failed

Stem cells appears to be a success, however. It may not work 100% of the time for everyone. I am willing to accept the fact there's no guarantee itll work for me.

hearing aids only amplify sounds WHEN you have some residual hearing and CI's are the only FDA approved treatment for deafness with dB loss of 90 or higher. I remember clearly when I was growing up, I'd look for any treatments and stem cell was often mentioned... and to this day, I haven't seen it materialized while they progressed with CI technology.

I did not even know about stem cells till 2008 and by then, there was plenty of proof of success in the animal model. I knew very little about CI till late 2008 when one of my audiologists mentioned them. By then, I was researching CI and stem cells and decided on stem cells.

It will COME to the day when we can finally treat deafness with stem cell technology but it ain't today unfortunately and the sources you cited aren't something I would trust.

That's your choice, I won't argue with this. I trust those sources and I believe the experts in the stem cell centers who are able to treat me and others today.

I know many Deaf people would take offense to the idea of "wiping out deaf people" with stem cells and that is entirely a different issue - I am talking about the technology we have, not how we apply the technology.

They feared the same with CI, now those who used to be against CI are pro CI. We could see a repeat of this with stem cells.

What makes you so sure none of us have not been in touch with any of the stem cell centres? Please refrain from making assumptions. I have a sister who is involved with the industry - HAs, CIs and yes the inner ear.

I would assume anyone against stem cells would not want to waste time reading/knowing about stem cells. They make all kinds of statements about stem cells which the experts in the stem cell centers would dispute/disagree.

To read that you may get stem cells from them when they have yet to give one out to a human being when they are just testing on mice - don't do that.

They are currently treating humans with stem cells for deafness.

All in all, do your research, deafdude. It is needed.

I research things througly before deciding. I had researched lasik for several years and decided to just stick with glasses. I see fine with glasses so no need to be risking my eyes with lasik. I don't hear fine with HAs so im willing to take a risk with stem cells.

Deafdude, Alicia is right. If you are fascinated with the pathological aspect of hearing loss, why dont you take some classes in audiology and maybe pursue a career in that field. I took graduate level courses in audiology. They were very interesting but too technical for me. lol

The money I have saved is for stem cells, not more classes. I can learn about hearing loss online and by participating in message boards. I have a long thread on cochlear dead regions and hearing loss to speech scores.

Deafdyke,

You have made some excellent points in you last post. I especially agree that money should go to finding cures for mental illness and diabetes because I have seen second hand the effects of diabetes and mental illness.

The real world does not work this way or there would be no cosmetic/elective surgeries, including lasik.

Let vote republican to ban on stem cell so DD will have no choice, lol.

Already done in America and we are already traveling to other countries.

I agree...I think the money would be better spent on research for real diseases. Deafness is not a disease. :roll:

Neither is small breasts, wrinkles, glasses, baldness, long nose, saggy skin, etc. The real world is run by profit/greed and when there's a market, companies rush to it. There is a huge market for treating deafness and companies are flocking to offer stem cells for this. Life is all about choices, some people risk their eyes with lasik so they see better without glasses, others risk their ears with CI and stem cells so they hear better.

Deafness is not life destroying or serious. You can cope with deafness, be lucky that it is not worse, etc life threatening conditions. i love being soundless at night

Partially true, but I know alot of people who say they can't cope with their deafness, especially the late deafened. Stem cells would offer a choice to anyone who wanted at least partial restoration of their hearing. I respect people's choice to be deaf, but alot of the anti stem cell people are being rude with my choice to be hearing.

Yes. It's not like we don't have ANY access to sound. The sound provided by a HA/CI is awesome....................and it does seem like a lot of the stem cell hopers are folks who are either very desperate (they were late deafened....and that's 100% completely understandable) or who still haven't come to terms with the fact that they are dhh.

I would like more access to sounds/speech than what I currently get with HAs.

 

[Mrs Bucket]

I am getting rude comments from the anti stem cell mob, almost all of who are culturally Deaf. They used to be rude to those who wanted CI. Thanks for respecting our choice to be hearing.

"Our choice?" So far it is just only you touting your desire/need to be hearing. I am sorry but you cannot be hearing; emotionally, socially, psychologically - you cannot be hearing as there are social dynamics both hearing and deaf individuals just cannot be the same.

I research things througly before deciding. I had researched lasik for several years and decided to just stick with glasses. I see fine with glasses so no need to be risking my eyes with lasik. I don't hear fine with HAs so im willing to take a risk with stem cells.

As a DeafBlind, I need to ask you to refrain from comparing vision to hearing. They both are vastly different; hearing and seeing are two different dynamics. ASL is a gestural-visual language. To speak, it is required to hear.

The money I have saved is for stem cells, not more classes. I can learn about hearing loss online and by participating in message boards. I have a long thread on cochlear dead regions and hearing loss to speech scores.

Why are you not educating yourself in college or taking classes when you should be allowing the professionals in this field do their job; thus allowing you to learn about why we all response in our own trigger reactions. I am in college and one of the programs is Lifespan Development - a wonderful psychology program. I learn about why we as individuals have culturally/socially based responses.

Learning online will not satisfy your knowledge; you need to get out and socialise. You tout to have IQ - intelligence but remember with IQ comes EQ - emotional intelligence.

I must advise you that you have weak EQ skills because your thinking processes do not bode well with your IQ. Take your last statement -

I can learn about hearing loss online and by participating in message boards.

Nobody here is a well-respected CI doctor or the well-respected stem cell researcher you seek out for. So far, you claim to be the "researcher" you are looking out for. In your mind - IQ and EQ, your words are the gospel.

Now I hope you understand why you view us attacking you - both your IQ and EQ are of the same plane. It is not working out well because we question your technique; naturally it is your inner self fight or flight coming out as a natural defense mechanism.

No one is attacking you here in this thread; we just question the integrity of your thinking process because of stem cell research itself.