Has anyone been or know of anyone treated with SC that has had an improvement in their hearing? I have what's called nerve deafness in which the hair cells in the cochlear die off and stop carrying in the sound. This is the type of hearing loss most people get but they get in when they are much older. Mine started as a young adult within 10 years there's only about 10%left. It's not genetic or virus atttibuted. It's beyond hearing aids. I am looking into several clinics for SCT. None of them have treated Hearing Loss. I have an email out to Ramirez as I have read many parents trusted him with their children. Ideally, I would like to be treated in the US for travel reasons. Ha! Wouldn't we all! If any of you out there know of any clinical trials or Doctors willing to treat me I would be the experiment to set the precedence or be the SCP. I know SC would work!
Sensory Neuro Hearing Loss
- Thread starter Cynthia
- Start date
Stem Cell Therapy for Hearing Loss
Cynthia:
The following URL is from RepairStemCells.org; the article is about a MS patient who had therapy done outside the U.S. But it also states "In February, Humphries underwent another experimental stem cell treatment to regrow inner ear nerve hairs. It not only improved his hearing but helped him tolerate heat, which can be a problem for people with MS?" There's a YouTube video on this patient (Mr. Richard Humphries) as well...
I've tried, without success yet, to try to find out more about this patients ear treatment...maybe you or someone else will have more luck...
http://repairstemcell.wordpress.com/2009/09/02/my-ms-pain-is-gone/
Robert
Cynthia:
The following URL is from RepairStemCells.org; the article is about a MS patient who had therapy done outside the U.S. But it also states "In February, Humphries underwent another experimental stem cell treatment to regrow inner ear nerve hairs. It not only improved his hearing but helped him tolerate heat, which can be a problem for people with MS?" There's a YouTube video on this patient (Mr. Richard Humphries) as well...
I've tried, without success yet, to try to find out more about this patients ear treatment...maybe you or someone else will have more luck...
http://repairstemcell.wordpress.com/2009/09/02/my-ms-pain-is-gone/
Robert
Wow!
Thanks Robert!
Very good news for MS patients and Late deafened adults like me. I'm trying to find his UTube video. See if I can track him down to answer a few questions. If I do I will let everyone know about our conversation.
Just a note of caution to anyone using Vicodin it is ototoxic - meaning it will hurt your hearing permanently.
There is no doubt in my mind that SCT can help me. The question now is getting everything together to get to the right clinic.
Thank you again!
Thanks Robert!
Very good news for MS patients and Late deafened adults like me. I'm trying to find his UTube video. See if I can track him down to answer a few questions. If I do I will let everyone know about our conversation.
Just a note of caution to anyone using Vicodin it is ototoxic - meaning it will hurt your hearing permanently.
There is no doubt in my mind that SCT can help me. The question now is getting everything together to get to the right clinic.
Thank you again!
stemcellblogger
New member
Answer for Cynthia and mor einfo on Richard Humphries, MS, Stem Cell treatment
Cynthia -
-------------------------------------------------------
Richard Humphries, MS, Stem Cell treatment
A minor correction and some additional info:
It was stated that this article: "My MS Pain is GONE!" http://repairstemcell.wordpress.com/2009/09/02/my-ms-pain-is-gone/
was from repairstemcells.org It is not. It is from repairstemcell.wordpress.com (the word cell is NOT plural)
Some additional info (some may overlap. fyi, Preston and RIchard were treated "together"):
My ?Battle With? and ?Victory Over? MS, by Preston Walker- Part 1
http://repairstemcell.wordpress.com/2009/04/07/my-battle-with-and-victory-over-ms-by-preston-walker-part-1/
My ?Battle With? and ?Victory Over? MS, by Preston Walker- Part 2
http://repairstemcell.wordpress.com/2009/04/07/my-battle-with-and-victory-over-ms-by-preston-walker-part-2/
Over a dozen articles on stem cell/MS/Humphries from donmargolis.com (the blog associated with repairstemcells.org) - http://donmargolis.com/SpecialPages/Search.aspx?searchtext=humphries&searchmode=ExactPhrase
HUGE resource for stem cells and MS (some overlap):
"Multiple Sclerosis and stem cells ? need more info?"
http://repairstemcell.wordpress.com/2009/09/02/multiple-sclerosis-and-stem-cells-need-more-info/
Preston's own blog - http://startelegram.typepad.com/my_fight_with_ms/
If I can be of any further help, please let me know.
Cynthia -
-------------------------------------------------------
Richard Humphries, MS, Stem Cell treatment
A minor correction and some additional info:
It was stated that this article: "My MS Pain is GONE!" http://repairstemcell.wordpress.com/2009/09/02/my-ms-pain-is-gone/
was from repairstemcells.org It is not. It is from repairstemcell.wordpress.com (the word cell is NOT plural)
Some additional info (some may overlap. fyi, Preston and RIchard were treated "together"):
My ?Battle With? and ?Victory Over? MS, by Preston Walker- Part 1
http://repairstemcell.wordpress.com/2009/04/07/my-battle-with-and-victory-over-ms-by-preston-walker-part-1/
My ?Battle With? and ?Victory Over? MS, by Preston Walker- Part 2
http://repairstemcell.wordpress.com/2009/04/07/my-battle-with-and-victory-over-ms-by-preston-walker-part-2/
Over a dozen articles on stem cell/MS/Humphries from donmargolis.com (the blog associated with repairstemcells.org) - http://donmargolis.com/SpecialPages/Search.aspx?searchtext=humphries&searchmode=ExactPhrase
HUGE resource for stem cells and MS (some overlap):
"Multiple Sclerosis and stem cells ? need more info?"
http://repairstemcell.wordpress.com/2009/09/02/multiple-sclerosis-and-stem-cells-need-more-info/
Preston's own blog - http://startelegram.typepad.com/my_fight_with_ms/
If I can be of any further help, please let me know.
Last edited by a moderator:
Cynthia:
I too am seeking help for hearing loss; I hope you're successful in contacting Mr. Humphries!
Robert
I had to edit stemcellblogger's post as he posted a link for a commercial site. We do not allow this for any clinics or doctors or commercial businesses unless it is posted in the promotional forum so that everyone realizes that the site is not independent and unbiased.
Don Margolis' site is a commercial site. It goes by the name Repair Stem Cell Institute. I have no problem with commercial sites, but in no way can I agree that the site has the top 8 clinics in the world listed on it. I disagree with one choice in particular. Don charges the clinics/doctors a percentage if you sign up for treatment on his site. I compare him to a travel agent who will do the work for you. Does it increase the cost of your treatment? It could, so if you are price shopping, try to negotiate a price on your own. Don't expect Don to do it for you. That is not something he should be expected to do if you decide to commit to his service. You also must use one of his clinics that participates in his business.
You do need to be aware that once you fill in the form on the site, you will be contacted several times in an effort to get you to make a commitment I am told by a few members. I am not sure if stemcellblogger is associated with Don or not. I always thought his site was an independent one, but lately he has been recommending that people use the services of the Stem Cell Repair Institute.
I am more than happy to provide anyone that wants it, a list of stem cell clinics that our members have found reliable and reputable. We do not run a commercial forum here so this list is sent as a private message to anyone that requests it.
Don Margolis' site is a commercial site. It goes by the name Repair Stem Cell Institute. I have no problem with commercial sites, but in no way can I agree that the site has the top 8 clinics in the world listed on it. I disagree with one choice in particular. Don charges the clinics/doctors a percentage if you sign up for treatment on his site. I compare him to a travel agent who will do the work for you. Does it increase the cost of your treatment? It could, so if you are price shopping, try to negotiate a price on your own. Don't expect Don to do it for you. That is not something he should be expected to do if you decide to commit to his service. You also must use one of his clinics that participates in his business.
You do need to be aware that once you fill in the form on the site, you will be contacted several times in an effort to get you to make a commitment I am told by a few members. I am not sure if stemcellblogger is associated with Don or not. I always thought his site was an independent one, but lately he has been recommending that people use the services of the Stem Cell Repair Institute.
I am more than happy to provide anyone that wants it, a list of stem cell clinics that our members have found reliable and reputable. We do not run a commercial forum here so this list is sent as a private message to anyone that requests it.
Thanks for the clarification
Thanks Barbara,
This is something everyone should know about. I agree very strongly about keeping commercial sites limited here. Personally, I would not use this type of service as I believe we amongst ourselves here have the best knowledge. EXPERIENCE! I appreciate you sharing this with me.
Thanks Barbara,
This is something everyone should know about. I agree very strongly about keeping commercial sites limited here. Personally, I would not use this type of service as I believe we amongst ourselves here have the best knowledge. EXPERIENCE! I appreciate you sharing this with me.
I had to get my account registered and activated in order to reply. A friend of mine linked me here since I know alot about stem cells and can help!
Yes, there's a 4 year old who got a 30db improvement with stem cells, it's in my blog. http://deafdude1.blogspot.com/
Theres a guy who got 25db improvement plus more testimonals of people reporting an objective as well as subjective improvement. With todays stem cell technology, most people improve in one ear and many improve in both ears.
Do you have any audiograms or any idea of how bad your hearing is today? How much benefit do you get with HAs? Has anyone discussed cochlear implants? I don't want a cochlear implant because I also am waiting for stem cells.
There's SCT centers in China that have treated a handful of people already. They don't guarantee anything since stem cells is so new but it works in most cases and unlike a CI, SC does not destroy residual hearing nor does it have the risks of CI, including surgery. SC can be administered by injection or IV. The cost in China is around $30k which is as little as a tenth the cost of USA! I plan to travel to China myself due to cost reasons.
That is great you are stepping ahead as a pioneer in SC. I am very excited for you!
Me and my friends will be next in line after the pioneers go ahead first and I see results from them. We would like to see before/after audiograms and a blog from those who got treated for deafness/hearing loss. Do you have any audiograms of your hearing loss progression?Interesting
Thanks for sharing....You aren't totally deaf right? Your must been able to acquire some speech and reading right? Tell me about your news source? What and where is the center? How are you coming up with the costs? How can you be so sure you will have a 40db improvement? How can you be so sure that within 2 treatments you will hear again? How do you know people haven't gotten sick? Who are the people whose audiograms are shown? Why aren't they talking about it? I'm very curious that's all. It's a learning process for all of us. If I ever have the chance to be treated I will have plenty of documentation to help others.
Thanks for sharing....You aren't totally deaf right? Your must been able to acquire some speech and reading right? Tell me about your news source? What and where is the center? How are you coming up with the costs? How can you be so sure you will have a 40db improvement? How can you be so sure that within 2 treatments you will hear again? How do you know people haven't gotten sick? Who are the people whose audiograms are shown? Why aren't they talking about it? I'm very curious that's all. It's a learning process for all of us. If I ever have the chance to be treated I will have plenty of documentation to help others.
Ill answer your questions, can you answer all mine? How deaf are you and can you scan and post your audiograms here? You are a late deafened adult, what age did you start losing your hearing?
1. I am profoundly deaf for the most part since birth. Above 250Hz, my loss exceeds 100db. Audiograms are shown on my blog.
2. Yes I was able to hear and understand some speech with HAs, this is why I don't understand why people who still have some residual hearing want a cochlear implant! A CI will just destroy your residual hearing and could make it impossible to benefit fully from stem cells.
3. Please visit my blog, I posted a link above. here's it again: http://deafdude1.blogspot.com/
4. The costs come from the center. Figure $30,000 as a good estimate in China. This is half the cost of one CI! Stem cells can treat both ears!
5. Right now there's no guarantee how much improvement youll get. To my knowlege, today's stem cells won't make you hearing, but can give you alot more hearing and youll hear some sounds/speech without hearing aids and with hearing aids, hear everything you want.
6. 96% of people don't get sick, I read the stats. Stem cells is far safer than cochlear implant, this is why I don't want a CI.
7. I only have one audiogram, read my blog and youll find out.
8. Stem cells is so new and there's only a handful of people who got it. People are talking about stem cells but for other conditions than deafness. You can be the first to blog about stem cells improving your hearing! Hope the answers help. Can you answer my questions and show us your audiograms? Im also curious.
Thanks for sharing
I am not considered deaf by defination b/c I was not born with a hearing loss. I acquired it as a young adult. I don't have any copies of recent audiograms b/c I have had my hearing loss for so long I don't keep an audiogram around. Nor is it a conversation I have with many people. As I'm sure you have found most people are clueless about hearing loss and audiograms unless they have a hearing problem. I will share with you that it is profound. If excepted into a SCT program I will ask my old ENTs to send me copies of my audiograms for documentation or reference.
I am not considered deaf by defination b/c I was not born with a hearing loss. I acquired it as a young adult. I don't have any copies of recent audiograms b/c I have had my hearing loss for so long I don't keep an audiogram around. Nor is it a conversation I have with many people. As I'm sure you have found most people are clueless about hearing loss and audiograms unless they have a hearing problem. I will share with you that it is profound. If excepted into a SCT program I will ask my old ENTs to send me copies of my audiograms for documentation or reference.
Do you remember anything about decibal loss? Can you hear anything without hearing aids? How much do you hear with hearing aids? How well do you function with your hearing loss? Are you willing to spend $30,000 and go to China for stem cells?
I understand your curiousity and No offense friend but this is too tiring to keep discussing my loss. If I ever get accepted into trial everything will be posted.
No, I am not willing to go to China and spend 30K only b/c I believe the treatment I am seeking is closer and less expensive. If that works for you then God bless you!
Everybody asks me how I function. Alls I can say is thru God's grace! Coping has been difficult. I have a high level of stress all day as I am on guard that I will miss something that is being said and look like an idiot. It's not easy when you keep losing your hearing b/c you have to keep adjusting. It messes with your head, your self esteem, every aspect of your life. I have to keep reminding people to face me when they speak. I have to be my own advocate. Frankly, it gets exhausting and frustrating. I was a very outgoing person before, little by little I started to isolate or only do small group interactions only b/c I need time to rest up from the stress of trying to hearing all day. I've missed out on cell phones, ipods, walkmans for that matter and a lot of good jokes and probably a few proposals. I put it in God's hands everyday as I pray for God to restore my hearing to find a cure for those suffering from this. As much as it sucks I'm a better person for this experience and am trying to find a way to use as a means to help others. I know the cure is on the horizon!
There is a national support group with local chapters called HLAA Hearing loss Assoc of America it used to be called SHHH Self help for the hard of hearing. They provide support in their local meetings with ideas of coping etc. Everybody in the group has some degree of hearing loss. So it's like a brain storm group. Overall it's a good organization. Look it up sometime as they have info on all aspects of hearing loss, legislation,aids, coping, service dogs that can assist you in your hearing needs. They advocated a great many laws to help us hear better in public places.
Peace!
How long should I wait for stem cells for deafness?
1. Good luck getting into a clinical trial in America. There will be thousands applying and perhaps 20 being accepted. I am not waiting 10 years for FDA approval in America and my odds of getting into a such trial is very low because everyone will want to be accepted.
2. Ive been told that treatment in America(where I live) can cost nearly $300,000 when it becomes available in 5 years. I can get it for a tenth the cost in China now. Bush banned stem cells so America is several years behind.
3. I hope the cure comes sooner rather than later so me, you and others can have their hearing improved or restored. Ive read that it may take 15 years for a complete cure, but today the SC labs in China can give an average of 20db improvement!
4. Furthermore,
Can you or anyone else try to get more audiograms(before and after) of any patient who got stem cells? By now, at least two dozen have gotten stem cells. We would like more results/evidence! Someone emailed a stem cell clinic in China that treated 4 patients and 3 of them improved an average of 20db and one got more than 30db improvement. That guy got so much improvement he could hear some sounds/speech unaided! I wonder how much of a loss he started with and what his final loss is now. Im guessing he was severely deaf(about 80db loss) and improved down to 40db loss which would give you 50% speech understanding unaided and aid you down to 0-10db easily.
Id also be interested if those stem cell centers in China and elsewhere believe stem cell technology will become more powerful for hearing loss in the near future(1, 2, 3 years) or if todays results are the best one can expect for a very long time(at least 10 years) I am not going to wait 10 years if todays results are as good as it gets for at least 10 years. Ill just go ahead with Phi4sius in the summer of 2010, take our 20db average improvement and be able to hear alot better with HAs. Then in 2020 or so, simply get more stem cells or some other more advanced procedure that can further improve hearing.
I want to know if they believe stem cells can be giving much more improvement in the near future(1, 2, 3 years) or will it be exactly the same as today's stem cells? I don't want to wait if I don't have to. I will only wait if results are expected to be much better in the near future. Otherwise ill just get my 20db average improvement which will make do for 10+ years till they find a better or different way to get me the rest of the way in improvement so I can hear well enough to rarely or never need HAs(40db or better unaided hearing)
1. Good luck getting into a clinical trial in America. There will be thousands applying and perhaps 20 being accepted. I am not waiting 10 years for FDA approval in America and my odds of getting into a such trial is very low because everyone will want to be accepted.
2. Ive been told that treatment in America(where I live) can cost nearly $300,000 when it becomes available in 5 years. I can get it for a tenth the cost in China now. Bush banned stem cells so America is several years behind.
3. I hope the cure comes sooner rather than later so me, you and others can have their hearing improved or restored. Ive read that it may take 15 years for a complete cure, but today the SC labs in China can give an average of 20db improvement!
4. Furthermore,
Can you or anyone else try to get more audiograms(before and after) of any patient who got stem cells? By now, at least two dozen have gotten stem cells. We would like more results/evidence! Someone emailed a stem cell clinic in China that treated 4 patients and 3 of them improved an average of 20db and one got more than 30db improvement. That guy got so much improvement he could hear some sounds/speech unaided! I wonder how much of a loss he started with and what his final loss is now. Im guessing he was severely deaf(about 80db loss) and improved down to 40db loss which would give you 50% speech understanding unaided and aid you down to 0-10db easily.
Id also be interested if those stem cell centers in China and elsewhere believe stem cell technology will become more powerful for hearing loss in the near future(1, 2, 3 years) or if todays results are the best one can expect for a very long time(at least 10 years) I am not going to wait 10 years if todays results are as good as it gets for at least 10 years. Ill just go ahead with Phi4sius in the summer of 2010, take our 20db average improvement and be able to hear alot better with HAs. Then in 2020 or so, simply get more stem cells or some other more advanced procedure that can further improve hearing.
I want to know if they believe stem cells can be giving much more improvement in the near future(1, 2, 3 years) or will it be exactly the same as today's stem cells? I don't want to wait if I don't have to. I will only wait if results are expected to be much better in the near future. Otherwise ill just get my 20db average improvement which will make do for 10+ years till they find a better or different way to get me the rest of the way in improvement so I can hear well enough to rarely or never need HAs(40db or better unaided hearing)
Good luck
These are good questions to pose to one of the Stem cell doctors or researchers out there. Have you asked these questions of the people at the clinic in China you keep referring to? Most of us on the board are like you ...just trying to find away to deal with our condition. We share info and experiences to help each other. We also advocate to make Stem Cells treatment a reality in the US. If you are interested in helping to further this cause then I encourage you to write your congress person, senator, govenor the President with all your facts and reasons. Call these people do whatever it takes to make yourself heard.
In the meantime, if you go to China keep us posted as we are all interested in anyones SCT experience.
These are good questions to pose to one of the Stem cell doctors or researchers out there. Have you asked these questions of the people at the clinic in China you keep referring to? Most of us on the board are like you ...just trying to find away to deal with our condition. We share info and experiences to help each other. We also advocate to make Stem Cells treatment a reality in the US. If you are interested in helping to further this cause then I encourage you to write your congress person, senator, govenor the President with all your facts and reasons. Call these people do whatever it takes to make yourself heard.
In the meantime, if you go to China keep us posted as we are all interested in anyones SCT experience.
Some of the questions being tossed out in this thread would be very suitable for the Ask the Doctor forum. Please submit them to my e-mail. Next month the host is Dr. Braly. There is so much on the horizon right now that I believe that today's treatments will certainly not be tomorrow's. I also think that anything that can be done in a clinic in China can be reproduced in a clinic elsewhere.
I do have to comment about Bush banning stem cells. This popular misconception has been circulating far too long. President Bush banned federal funding for embryonic stem cell research. PERIOD. President Obama lifted that ban but we have still been bogged down with arguments of whether the old lines can be used, moral objections that some states are using to not allow research, iPS cells which could make embryonic stem cell research unnecessary, etc. The arguments are putting us behind. Stem cell research scams are putting us behind. Many research programs are simply jobs programs for scientists! Money is a huge factor. Who wants a cure when millions can be made researching, obtaining lucrative patents one can sell to pharmaceutical companies, etc.?
President Obama and members of Congress need to jump on board with the proposal that ICMS has made to allow safe adult stem cell therapy to take place all over the U.S. using ICMS guidelines and its registry system. Instead, they are still on the embryonic stem cell merry-go-round. I truly wish we could see some of the promised change when it comes to stem cell therapy.
I do have to comment about Bush banning stem cells. This popular misconception has been circulating far too long. President Bush banned federal funding for embryonic stem cell research. PERIOD. President Obama lifted that ban but we have still been bogged down with arguments of whether the old lines can be used, moral objections that some states are using to not allow research, iPS cells which could make embryonic stem cell research unnecessary, etc. The arguments are putting us behind. Stem cell research scams are putting us behind. Many research programs are simply jobs programs for scientists! Money is a huge factor. Who wants a cure when millions can be made researching, obtaining lucrative patents one can sell to pharmaceutical companies, etc.?
President Obama and members of Congress need to jump on board with the proposal that ICMS has made to allow safe adult stem cell therapy to take place all over the U.S. using ICMS guidelines and its registry system. Instead, they are still on the embryonic stem cell merry-go-round. I truly wish we could see some of the promised change when it comes to stem cell therapy.
Sgt. Preston Walker
New member
Audiograms
We would like to see before/after audiograms and a blog from those who got treated for deafness/hearing loss. Do you have any audiograms of your hearing loss progression?[/QUOTE]
Richard Humphries said he would send his to me.... However, his email address is rdhforegolf@hotmail.com .
It will be a quicker turn around if you contact him directly.
We would like to see before/after audiograms and a blog from those who got treated for deafness/hearing loss. Do you have any audiograms of your hearing loss progression?[/QUOTE]
Richard Humphries said he would send his to me.... However, his email address is rdhforegolf@hotmail.com .
It will be a quicker turn around if you contact him directly.