Stem Cell Treatment For Hearing Loss Has Begun.
UPDATE: There is a captioned video, so check it out:
http://kokonutpundits.blogspot.com/2009/11/video-interview-caption-with-first.html
Thanks to neuro!
First of all, I want to state that I am NOT an expert in this subject I am about to blog about.
A friend emailed to me, with the links about a stem cell treatment for hearing loss for a late-deafened young adult. The article, http://www.earthtimes.org/articles/show/rnl-bio-rescues-a-college-student-from-autoimmune-hearing-loss,1027683.shtml, states that the lady was losing her hearing to an autoimmune disease since she was 15 years old and that the doctors tried this “radical” stem cell treatment (harvesting the fat cells from the surrounding of the lady’s belly button and isolated the cells and had them sent to South Korea. Then the family went to South Korea (due to FDA’s not approval of the adult stem cell treatment for hearing loss where the lady received the treatment via IV.) It was an interesting article to read and I realized that it was just starting… stem cell treatment has succeeded in getting most of the hearing back to the young lady and so, what’s next? I want to make it clear that the article discusses ADULT stem cell treatments, but we all know that sooner or later, stem cell research will venture into infants/children who lose their hearing due to autoimmune diseases or born deaf and stem cell treatments prove their ability to grow cilia (hairlike cells) in their cochlea. It’s less invasive than cochlear implants, all right. The majority of hearing parents WILL take this stem cell treatment for their deaf babies over subjecting them to CI surgeries, believe me. I don’t know if the treatment will restore all, most, or some hearing to the infants/children… it all depends on the factors.
There is a YouTube vlog about it, but it’s not captioned. You could check it out and ask someone to interpret it for you.
http://www.youtube.com/user/rnlbio#p…-A7LaM]YouTube
That’s about it.
Have a good day.
I’m curious how the Deaf Community will feel about this. This approach doesn’t require any invasive surgery and insertion of man-made electronic device, the leading reasons for their opposition to cochlear implants. Many claimed that stem cell therapy would be more ideal than this machine implant, but that was some time ago.
Will the Deaf Community object to this novel treatment if this is proven extremely effective? Or will they still object to this, citing the rights of Deaf infants and toddlers to wait until they are old enough to make decisions for them?
Mishkazena
November 8, 2009 at 9:52 pm
Yes, Mishkazena, I am wondering about this also. After all, the majority of deaf babies is born to the hearing parents and we know that the hearing parents will opt for less invasive treatments for their babies/children. I honestly don’t know how long it would take cilia to become regenerated sufficiently for the brain to utilize the auditory stimuli, likely requiring less need to sign language and more need for AVT.
It will be interesting to observe this trend.
kmayes
November 8, 2009 at 9:59 pm
I’m guessing that when the stem cell treatment is approved and if it does actually restore hearing, many parents of deaf/hoh children will no question about it, opt for it. That’s 90% right there! A big number, no doubt about it.
There’s so much more that we don’t know and I’ve been following on this topic for some time now. This is great news, one reason why I put off on getting a CI.
Out of the many deaf people, we will see a good number of them that will opt for it, my guess. The extremist definitely will not. And, if all goes well as expected, we can predict that the deaf culture will die out slowly, maybe in the next 50 to 100 years. Many deaf of deaf who procreate might find themselves a rarity. Be interesting to see what the numbers tells us, how many would opt for it and how many would not.
And, the deaf extremists thought that cochlear implants are dangerous. Not. It’s the cure that is detrimental to the deaf culture.
It’s all science and technology and if many deaf people appreciate what technology has done for them, in areas of video phones, captioning, text messaging, etc., then they will have to learn to appreciate all technology that improves the quality of life for deaf people.
Gamas
November 8, 2009 at 11:04 pm
I’d put my name down straight away Gamas ! but the stem cell approach so far hasn’t been tried on someone long term or born deaf yet. As far as stem cell research being a threat, I don’t buy this, what’s to threaten ?
MM
November 9, 2009 at 3:28 pm
MM, exactly. From what I understand, stem cells come from one’s own body and more safe to use on one’s own body…with a slight alteration in genes of course.
kmayes
November 9, 2009 at 3:50 pm
Gamas,
To be honest, I will not go for stem cell treatment… because I want to be able to sleep in the nights ;o) So I believe that it would be the ideal treatment for late deafened population and for infants/toddlers (the younger, the better, so that their brains will quickly adapt to increasing volume of soundness as cilia regenerates.)
Yes, this is more of a threat… I sense that the deaf culture does not fully understand it.
Karen Mayes
November 9, 2009 at 12:02 am
Yea, well that might be true for many who have been deaf for years, they might not be able to adjust. I think I will. I am hoh and can hear certain frequencies at night when I sleep. For others, there are ear plugs.
There are plenty of deaf adults who lost their hearing as a child and they would probably go for it too. Ideally, it may be good for certain group of people, but it’s not to say it will be limited to that? It does take adapting to new sounds.
Let’s not forget many deaf people who lost their hearing between as a youngster who still want to hear again. They know what it is like to hear and long to hear again.
Be nice if we had a poll to see who would go for it, if it was available for them.
Two great money making schemes: AV and ear plugs.
Gamas
November 9, 2009 at 12:39 am
I’m not surprised when the time comes. I knew since President Bush first announced there will be sixteen limited lines as the federal gov’t will fund the stem cells.
Yet, since FDA has not approved the stem cells, the medical team from USA have watched and pursued the medical team from other countries to use the clinical experiments. If it succeeds and cures before it reach to the FDA for the approval, I think it’ll be great. That’s because the medical team from other countries would exchange the information in order to save the $$$$.
Think about the “Machine vs. Natural” controversy. If the FDA approves the stem cells treatment for the hearing loss, I think there will be the short-term controversy.
White Ghost
November 9, 2009 at 1:07 am
Oops!
Need to add on the first paragraph.
“I knew since President Bush first announced there will be the sixteen limited lines as the federal gov’t will fund the stem cells, the treatment on hearing loss will be included when the time will come.”
White Ghost
November 9, 2009 at 1:19 am
It sounds very much like science fiction books I read when I was a teenager… politics, economics, medicine…
Short term controversy? If it is for late deafened adults, yeah… but what if it’s done on infants/children? I think it would cause more uneasiness to the “extremists” and more determination in keeping ASL alive… I could be wrong though.
Okay, I am hitting the sack… just to read the novel and then to sleep. My hubby will be keeping an eye on this blog and join the conversation if he’s interested ;o)
kmayes
November 9, 2009 at 1:24 am
Oh, I can see a big uproar about this. Of course, I would not be in on the discussion cuz it is not our decision as a deaf community to make.
But I can take this one step farther: when, the key word is WHEN, this becomes mainstream, then it will be a matter of a shot of meds into a pregnant woman and the process will be done by the time the baby is born. It will be that simple. They already have the technology to determine if the baby will be born hearing or not.
Me, as a born deaf individual, will have a lot to think about in get this or not. First, is my workplace, it will just make communication that much easier. I can see people jumping my throat about this. Second, it is the hearing world out there and there is just so much that I know I’m missing. – the main one being music. But then at times, silent is golden! So, I guess I better start researching ear plugs!
Brian L. Mayes
November 9, 2009 at 1:43 am
I am asking not about your vlog but about your clock.
You said you had to hit the sack now. Your clock shows
Monday, Bovember 9th at 1:24 a.m. WHILST I am in Washington, DC where the clock shows Sunday, November 8th at 8:45 p.m. Are you based somewhere in the English Channel? Just curious.
Jean Boutcher
November 9, 2009 at 1:48 am
There are some assumptions we can make (while waiting for more information) for the sake of discussion.
Assumption one: The stem cell treatment is a “complete cure.” Babies can be treated as soon as identified and would grow exactly as hearing children. That will naturally eliminate 90% of the Deaf population.
That would leave the 10% who cannot be treated for some reason (like total absence of cochleas) or those whose Deaf parents opt out in favor of raising their kids in their own culture. That raises more questions like: should legislation be passed forcing stem cell treatment on these kids?
Here Deaf Culture would not die out, but remain a statistical oddity and anthropological curiosity that can be preserved like we do with dying languages and cultures.
I believe that most culturally Deaf people would not object to a perfect cure. Even they would not impose deafness on their hearing children, less mandate deafness for children of unknowing hearing parents.
However, in the past we have seen the tragic results of less than perfect cures and wrong educational approaches.
Assumption two: The stem cell is not a complete cure and still leaves gaps that need to be filled by aids, implants, special education and physical accommodations.
Deaf Culture will not necessarily be helped or limited by this, but we may see a kind of bicultural people like we do with today’s CI and HA generation. Questions arise: how do we regard these people–like we do today’s HOH generation, design different educational and instrumental approaches, amend existing ADA guidelines to better support a half-hearing people, etc?
This is where I would expect the most controversy to arise…with imperfect hearing and bad assumptions made by medical-model people and the desire for parents to have hearing children having too much hope, we will see again concerned Deaf people advocating for better acceptance, more visual approaches to education and more understanding of the dangers of overexpectation.
Other assumptions that I would rather not get into: stem cells creating unexpected problems that affect health, longevity, brain function, or psychological problems. Hopefully this is ruled out early, not later.
Dianrez
November 9, 2009 at 2:22 am
[...] This post was mentioned on Twitter by Deaf Village, Jeff Robinson. Jeff Robinson said: Stem Cell Treatment For Hearing Loss Has Begun. http://tinyurl.com/ya7tbec [...]
Tweets that mention Stem Cell Treatment For Hearing Loss Has Begun. « Life Seen through Karen Mayes’ Eyes -- Topsy.com
November 9, 2009 at 2:32 am
Social comments and analytics for this post…
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uberVU - social comments
November 9, 2009 at 4:00 am
Hm, Brian… well, as you know me, I was born deaf and I will likely die deaf. I’d not want to go crazy having to hear 24/7. If I were born hearing, became deaf overnight, I’d opt for stem cell treatment, no question about it.
We should look into the stocks that concentrate on earplugs ;o) Kidding.
kmayes
November 9, 2009 at 10:01 am
Hi Jean,
Ugh, it’s the WordPress that I need to tweak with its clock. I am not expert on it… I live in Indiana ;o) I see WordPress says it’s past 10 AM now… while it’s 5 AM now. I will figure this annoying problem out later on, bleh.
kmayes
November 9, 2009 at 10:04 am
Dianrez,
Yes, I noticed that the stem cell treatments were not going to be the answer to all problems. Likely it will succeed 100% in some areas and 80% in other areas and 25% in other areas…etc. I know it all depends on the body’s able to regenerate its specialized cells or to accept the new organs grown from the stem cell labs… either way.
Some people will likely object to this idea would be due to religious beliefs; to belief in children’s right; to the desire to preserve the culture; to prolife (not believing in creating life under the microscope to end up to destroy them for the sake of science and medicine); and to name a few reasons. I feel more comfortable with the idea of harvesting our OWN body cells for stem cell research.
I am questioning the percentage “100%” cure rate. And what are the side effects, like you said. So hearing aids would likely become a hot market for people who undergo stem cell treatments for hearing loss.
Only time will tell.
kmayes
November 9, 2009 at 10:15 am
[...] "Stem Cell Treatment For Hearing Loss Has Begun". "Stem Cell Treatment For Hearing Loss Has Begun". Stem Cell Treatment For Hearing Loss Has Begun. Life Seen through Karen Mayes’ Eyes [...]
Info on STEM CELLS from scientific source - Page 14 - AllDeaf.com
November 9, 2009 at 10:32 am
to thank the person that makes the debate without censorship, in this blog. We should discuss the breakthrough of stem cells and treatment of hearing loss. What happens to the scientific community? Do not they say anything?
neuro
November 9, 2009 at 10:54 am
Yes, Neuro…
It appears that stem cell research is still in “infancy” and due to controversy over how the stem cells are harvested, we don’t know much about it… thanks to Bush administration which was against stem cell research. When I first heard about it, a decade ago or so, I understood that the stem cells were harvested from embryos which were later destroyed. Hence controversy. Nowadays, stem cells can be found around the belly buttons and in the bone morrows, if I understand correctly. Nowadays amniotic fluid and placenta are harvested for stem cells.
As I said at the beginning of my blog posting, I am not very knowledgeable about stem cell research. Obama administration opened the doors to stem cell research, so we should hear more about it in the next few years.
kmayes
November 9, 2009 at 11:24 am
Wow. After all the recent infighting we had within the deaf community regarding CI, our debates are already outdated with the arrival of advanced stem cell technology.
No question about it. It’ll have a major impact on our deaf community and there is not much we could do about it. Mind you, stem cell is not the only thing that’s coming. There are at least five or six different new solutions coming around the corner. I rest my case.
Barry
theHolism
November 9, 2009 at 2:47 pm
Hi Barry,
Yes, you are correct. I see that the Deaf Culture is NOT aware of the impact that it’s hitting it now.
I sense that we are entering the new era of what “benevolence” really mean to the deaf community and its impact, especially with the advances in technology and medicine. Some who feel that being Deaf is God’s birthright for them will be dismayed at this… how will they deal with the majority of hearing parents if/when the treatments (stem cells, gene engineering, etc..) prove to be more effective than hearing aids and cochlear implants? They’d have to come with another way that would ensure the longevity of Deaf Culture and ASL.
So… wait and see.
kmayes
November 9, 2009 at 3:15 pm
can see the video, but with sub-heading. Thanks to the blog Kokonut Pundit
http://kokonutpundits.blogspot.com/2009/11/video-interview-caption-with-first.html
neuro
November 9, 2009 at 3:25 pm
Ahhhh… Mike McConnell, aka Kokonut Pundit! I was thinking of him yesterday when I realized the youtube video was not captioned ;o)
I am heading over to his blog now…
kmayes
November 9, 2009 at 3:30 pm
I posted about this in my blog too. I was born deaf but am so excited to see what it’s like to hear better. I am going to complile a Q and A section in my blog, feel free to ask questions!
Deafdude
November 9, 2009 at 3:37 pm
Hey Deafdude, I bookmarked your blog.
Thanks ;o) I see that there was a 4 year old child receiving stem cells treatment as well… hm.
kmayes
November 9, 2009 at 3:47 pm
And, the year 2010 being the earliest for human trials in the USA? One site talks about having blood cord stored, what if there are people that are interested in something like that and do not have their own blood cord stored? I’m a bit not clear on this, is this blood cord the same thing as stem cell? How does one harvest their own stem cell?
Gamas
November 9, 2009 at 6:29 pm
Gamas, hopefully this link provides an idea of where they are found:
http://www.isscr.org/public/adultstemcells.htm
It’s just adult stem cells… not embryonic stem cells.
kmayes
November 9, 2009 at 6:39 pm
Hi Karen and all,
Stem Cell regeneration is right around the corner without a doubt. I’m told from a person who is a UCI (University of Irvine) graduate that regenerating hearing from CI users to any type of hearing loss. I personally prefer CI so I can turn it off when I need to go to sleep.
Stem Cell is a great tool for lot of reasons which regenerate missing blocks of your DNA. It can repair your eye sights, etc. It’s a complicated process but it’s there!
Russell
RussellE
November 9, 2009 at 6:44 pm
Cord blood has a very high percentage of stem cells in it. It just makes it easier to harvest the amount of stem cells needed. Fat cells also seem to have a higher percentage of stem cells than other types of cells in the body, from what I understand.
This will be a good solution to hearing loss if the loss is only from damaged or missing hair cells. If the cochlea itself is deformed, or other parts of the ear are deformed, then those parts will have to be regrown entirely. This will probably be a lot farther off in the medical horizon, but it will happen eventually.
I have often wondered if the controversy over implants is really about the implants, or if it is really about the threat to Deaf Culture. If it truly is only about the implant, then the actual total “cure” to deafness should be welcomed openly. We will see.
K.L.
November 9, 2009 at 6:51 pm
I noticed one thing… a total silence from the people who are involved in advocating for audism, DBC, etc… no comments from them (I am sure they lurk here though.)
Interesting.
kmayes
November 9, 2009 at 7:07 pm
I noticed the same as well. They were making all kinds of false assumptions about stem cells and when proven wrong, they just silently disappear! Last month one lady said “youll still be saying stem cells soon in 10 years” when I corrected her and showed the evidence, she was silent and didn’t respond.
There’s still some people arguing that stem cells is inferior to CIs and won’t give hearing as good. When asked if they think CI is a cure, they say no. Stem cells is the cure! Well not everyone will have perfect hearing after stem cells but they will hear so much better!
To the guy who said ” I personally prefer CI so I can turn it off when I need to go to sleep.”
You could get a low dose of stem cells and ask for around 20db of improvement. Instead of 100db HL, you could be at 80db HL. Get the best HAs(70db gain) and youll hear at 10db with HAs and silence(80db HL) by removing your HAs.
“This will be a good solution to hearing loss if the loss is only from damaged or missing hair cells. If the cochlea itself is deformed, or other parts of the ear are deformed, then those parts will have to be regrown entirely. This will probably be a lot farther off in the medical horizon, but it will happen eventually.”
Most of those who get CI are going to be needing a new cochlea grown and transplanted. A similar experment was performed on birds and they were unable to regenerate their hearing with extensive damage. CI causes a ton of damage to your ear besides destroying all your residual hearing.
“I have often wondered if the controversy over implants is really about the implants, or if it is really about the threat to Deaf Culture.”
For me, it’s about the implants, their risks, destroying your ear(s) and being unable to benefit from future regeneration technology. Many people who get CI have enough residual hearing to be getting partial benefit from very powerful HAs programmed at maximum gain/amplification.
Deafdude
November 9, 2009 at 7:28 pm
“Well not everyone will have perfect hearing after stem cells but they will hear so much better!”
Pretty much a lot of adults in the age range of 25 and up do not have 20/20 hearing as it is – mostly due to environmental factors such as exposure to loud music, etc. So, I’d be up there with them. I know many who tell me they don’t hear as well as they used to but are still able to follow conversations and use phones, etc. Nothing is perfect.
Definitely lots of questions that needs to be answered so, deafdude, I am looking forward to your Q & A section.
Cells dies, what happens when one get stem cell treatment and it eventually dies out, can one get another treatment?
Gamas
November 9, 2009 at 7:40 pm
Cord Blood? Despite on the diabetics and other blood diseases, how does it work?
I wonder how it works…..I have no idea how they prevent from getting the diabetics and other blood diseases.
Like Barry said there will be *more* medical technology in which are coming up within the decades. Our debates will run out and cannot battle with the medical technology. That’s true.
Will the medical technology hurt the enrollments of NTID, Gallaudet and CSUN? Perhaps. Just wondering.
Dr. Hurwitz mentioned during his tour at Gallaudet that he’ll attempt to recruit up to 3000 students. Well, I doubt that it would happen.
White Ghost
November 9, 2009 at 8:13 pm
With clinical trials starting, it will still be about two years or more before it becomes an accepted treatment that insurance will cover instead of implants.
The problem with clinical trials is that it measures safety and efficacy only in the present. It cannot cover safety or efficacy after five years, or over a lifetime until that much time has passed.
How is one to know the effects on a child 25 years later? Will there be problems with stem cells dying out prematurely, or turning malignant, or growing where they aren’t supposed to? Those questions cannot be answered in the present even when the treatment is approved for general use.
Something to think about. We may not see the full effects on Deaf society for another generation or two.
Dianrez
November 9, 2009 at 10:00 pm
There seems to be a lot of confusion about stem cells on here.
Embryonic stem cells
1. FROM WHERE? – come from embryos
2. DO WHAT? – exist only to make a fetus…not to heal the body
3. POTENTIAL? – haven’t produced any treatments
4. DOWN SIDE? – often grow tumors
5. AVAILABLE? – not available
6. FOR HEARING? – there are a few studies but currently no clinical trials for stem cell treatment of hearing disorders
7. OTHER DISEASES? – there have been no successful clinical trials with stem cells
8. HOW LONG? – once the trial begins, IF IT BEGINS, it will then take at least 7-10 years (clinical trial period) to complete the trial
Adult stem cells
1. FROM WHERE? – come from dozens of places in the body (blood, marrow, teeth, umbilical cord, mother’s milk)
2. DO WHAT? – exist only to repair the body
3. POTENTIAL? – have produced treatment s for over one hundred diseases
4. DOWN SIDE? – have never grown tumors
5. AVAILABLE? – treatments are available all over the world
6. FOR HEARING? – there is a long history of successful studies – http://repairstemcell.wordpress.com/2009/11/16/hearing-loss-%e2%80%93-a-brief-history/
7. OTHER DISEASES? – there are over 2000 clinical trials that prove their therapeutic benefit and safety
8. HOW LONG? – stem cell treatments are treating hearing disorders NOW
I hope that clears up the confusion.
David Granovsky
November 18, 2009 at 7:46 pm
David…
Thanks! I am going to copy and paste what you just said on Dianrez’s blog’s latest posting, http://dianrez.xanga.com/716406316/a-note-of-caution-on-stem-cell-treatment/?nextdate=last.
kmayes
November 18, 2009 at 7:51 pm
hi.
to give more credibility to the treatment would be important to show the results. For example audiograms before and after treatment. Also know how much improvement we guarantee the stem cell treatment. “All that will try recover the audition?
neuro09
November 20, 2009 at 3:50 pm
I’m pre-lingually/culturally Deaf who became legally Deafblind with Ushers Syndrome. American Sign Language is my native language. Given the preponderance of problems within and beyond Deaf-World I’m the furthest from biased about this.
The concept of Stem Cell procedures are nothing new to people who have done their homework for years. I’m now in the midst of considering this advance for my peripheral vision which has been lost for awhile. I don’t mind this because I will know what I’m seeing again. I’m most doubtful I’d be up for hearing again thru this procedure because I never knew what it’s like to hear. Heavy-duty auditory training and all that jazz. No, thank you.
This is what I’ve been talking about for TEN YEARS. This is why I don’t care for Cochlear (or Retinal in my case) Implants debates. Unbelievable how many were naive debating this as if CI would exist forever. The only thing is that I don’t like ones getting CI for the wrong reasons or when medical risks are involved in a particular case or when one doesn’t want CI. The younger, the better. This is beyond creepy.
Limiting logic of arguments to invasiveness is akin to arguing with idiotic people. Unbelievable how so many people rambled on boring some of us with technical mumbo-jumbo without hard-hitting and intellectual ethical discussions specifically focusing on ethics not the invasive aspects about CI issues.
Get on with the program. Respect people who make the choices for their babies to receive stem cell procedures. Respect people who want their babies to be culturally Deaf and in 10% of cases deposited in one of the deaf schools including state-run ones.
Let’s coexist in harmony. Please, this is America representing Freedom of choice as long as they’re equally informed. States are obligated to present options without bias. This means the Deaf and non-deaf schools (self-contained with deaf or bona fide mainstreaming with interpreters) better clean up their act.
Like it or not, Americanism will prevail in name of civil liberties.
Robert Alfred Hawkins
November 9, 2009 at 10:29 pm
[...] Mayes shared the news on her post “Stem Cell Treatment for the hearing loss has begun” and has some good links to follow, not to mention good discussions going on over [...]
Would you? I Would! « Gamas Wanderings
November 9, 2009 at 10:30 pm
I’d just like to recommend a book that is sort of related to this topic.. “Flowers for Algernon,” written in 1968. It’s about a mentally retarded man who undergoes an experiment that increases his intelligence to a supergenius level, but unfortunately doesn’t take hold and his intelligence degenerates back to where it was before. It’s written as a diary from the man’s point of view and chronicles the impact of the experiment on his personal life. VERY fascinating read, and emotionally powerful.
Moebius
November 10, 2009 at 4:51 am
Dern, now I think I should add something else…
This book I recommended above can really provoke one to think about just how beneficial progress can be to an individual on a personal level
Moebius
November 10, 2009 at 4:53 am
I’ve also read about how some blind people have had surgeries performed on their eyes and vision in those eyes have been completely restored, but they still can’t see because their brains “forgot” how to “see” because with no stimulation coming from the eyes, the areas in the brain for processing vision simply atrophied so they can’t process the information anymore. That could also be the same for people who have been deaf all their lives, even with stem cell restoring their ears, their brains may very well have “forgotten” how to process the signals coming from the ears.
Moebius
November 10, 2009 at 4:57 am
then … How do they hear with cochlear implants who have not ever heard?
neuro09
November 10, 2009 at 10:27 am
I’m legally blind from Ushers Syndrome (RP & Deaf). There are real documentations showing differences between ones who have been blind for a long time if not since birth compared to ones recently blinded. Big difference. There are already procedures involving visual training which is much easier than auditory training.
Robert Alfred Hawkins
November 10, 2009 at 11:40 pm
Hearing Loss Turns Into Hearing Gain From New Stem Cell Research And Treatment
http://donmargolis.com/Home/Blog/November-2009/Hearing-Loss-Turns-Into-Hearing-Gain-From-New-Stem.aspx
neuro09
November 10, 2009 at 10:20 am
I agree, many prelingual deaf do get significent benefit with CI. That’s probably because they heard enough with HAs so their brain remembered what hearing was like, even if it wasn’t normal hearing. It would be a different story if that person never heard a sound in his life.
Deafdude
November 10, 2009 at 1:53 pm
but still, if you’ve never heard a sound in his life, are implanted, and has benefits with cochlear implants. Not as much as anyone has ever heard. If you are introduced to prelingual deaf, why not be prelingual deaf candidate stem cells?
neuro09
November 10, 2009 at 2:06 pm
Hi Karen,
I didn’t know that you are so interested in hearing -related topics that I have been refusing to share with you about my experience on CI. Although I am still prelingual, I never miss any incoming background and conversational sounds through my “new hearing” since six years ago. My neural plasticity on speech sounds is still unnerving due to lack of tonal sibulants that was substracted by my very own processor. It is very unfair for everyone to conclude that any prelinguals who acquired CI in later life does NOT do well in any incoming sound sources. It may take time for major CI companies to find a better algorithms to improve thier hearing on speech as well as musical lyrics.
There are lots of things I can learn about how we hear regardless of our age and hearing experiences.
It is still a freedom to explore what we have on our body other than trying to mold ourselves to “Deafism” pressure. Just like scientists and rocket engineers who are willing to explore extra sensory persceptions rather than just sit down and let them be happy “about” me.
Rick Freeman
CID 1979
Rick Freeman
November 10, 2009 at 4:03 pm
Hi Rick,
Cool about you having CI… but I think you read me wrong. I have a late deafened son who is more of an aural person than a visual person. I have a deaf daughter, born deaf, etc. and she has no interest in CI nor I have any desire for her to get one.
You could read my other blog postings and you’d realize that my son was born with normal hearing, already having a foundation in language, etc. There are ALL kinds of hearing losses. You’d feel differently if your child was born with normal hearing and then started losing hearing SLOWLY over the years, believe me. Your child would have strong feelings about it. So as a parent, I do what is best for my child.
Have a good day.
kmayes
November 10, 2009 at 5:46 pm
So a prelingual deaf person can do well with stem cell, even after not hearing sound for years? Do we assume that because of those already with CI are doing well?
Gamas
November 10, 2009 at 5:49 pm
Gamas… if one has good aural skills, wearing hearing aids for years, etc… yes, I think the brain will pick up on it. But for one who has zero aural skills, etc… I believe it would take a LONG time for the brain to get used to the incoming sounds. I wear hearing aids, yes, but I am not interested in getting a CI or two for myself… nope, because my hearing aids put me in 30 dB range, able to hear high frequency sounds (music, birds chirping, etc.) If I opt for stem cells… well, I’d ask for a FEW gains in dB, not up to hearing level, because my brain is already wired to being deaf since birth… hmmm…
kmayes
November 10, 2009 at 5:57 pm
I have a question to all of you, discuss what will happen to CI and the fate of CI companies once stem cells takes off and becomes mainstream. What will happen to those who already have a CI or two? What will their options be?
Deafdude
November 10, 2009 at 6:40 pm
Deafdude,
Well… we already noticed that Advanced Biotics was bought out. So I am sure that the CI companies will quickly find/develop other products to deal with. Stem cell therapy would not be for everyone… might work or might not work. CI companies MIGHT merge with hearing aid companies? Who knows?
kmayes
November 10, 2009 at 7:06 pm
Yes, it’s possible. Remember that CI companies have paid lots of money to the researchers.
White Ghost
November 10, 2009 at 7:14 pm
They are working on a genetic cure for those that get little or no improvement from stem cells. There’s several other ways to regenerate hair cells. CI would be a last resort and likley to be a niche market. Perhaps those who already have CI will be stuck with CI for decades.
Deafdude
November 10, 2009 at 7:40 pm
AB bought out by whom?
Gamas
November 10, 2009 at 7:22 pm
Interesting….I googled it up and Sonova brought AB out as of YESTERDAY!
White Ghost
November 10, 2009 at 7:28 pm
Gamas, I heard Sonova was buying AB, as a “partnership.”
Check out the link:
http://www.pr-inside.com/advanced-bionics-to-be-acquired-by-r1572920.htm
kmayes
November 10, 2009 at 7:29 pm
White Ghost beat me to it.
kmayes
November 10, 2009 at 7:30 pm
I now have a Q and A on my blog, check it out and ask away!
Deafdude
November 12, 2009 at 3:13 am
Stemcells helped this girl!
http://www.bbc.co.uk/ouch/messageboards/F2322274?thread=7061404&latest=1
neuro09
November 12, 2009 at 6:38 pm
from “RSCI Newsletter” of November 2009 I read an announcement about the impending hearing loss treatment with stem cells. He says that in January 2010 will begin treatment (USA??). And there will be more news in the next issue. Hopefully, I at least expect more information and news!
That’s information
“HEAR YE, HEAR YE! THE FUTURE IS HERE!
Repair Stem Cells for a variety of hearing disorders will be available in the USA in January. Of all the treatments that RSCI recommends to patients; treatments for hearing disorders will be the least expensive. To find out more, email donmargolis@gmail.com with the word “HEARING” in the subject line. Please include your name and the country in which you currently reside in the message. Next issue will cover stem cells and hearing disorders”.
desdeREAL PEOPLE – REAL NAMES – REAL IMPROVEMENT.
source: http://neuro09.wordpress.com/2009/11/14/real-people-real-names-real-improvement/
neuro09
November 14, 2009 at 11:05 am
Good, neuro09, I’d keep an eye out for it… to learn more information about stem cell therapy
)
kmayes
November 14, 2009 at 11:32 am
Hey all-
Thanks for looking into my recent article on hearing loss and stem cells. Here’s an addendum…
HEARING LOSS – A BRIEF HISTORY
http://repairstemcell.wordpress.com/2009/11/16/hearing-loss-%e2%80%93-a-brief-history/
I hope the info is useful
David Granovsky
November 16, 2009 at 4:35 am
At 15 my son suffered from Sudden Sensorineural Hearing Loss which was misdiagnosed by the pediatrician and I didn’t get him to an ENT until 15 days later when I realized the pediatrician didn’t know what he was talking about. The guilt I live with is horrible. Every few months I look for new treatments and this seems so promising. Thank you for posting the information.
michele mislevy
November 16, 2009 at 6:10 pm
There is nothing to be guilty of because there was no cure for hearing loss till now. What degree is his hearing loss in each ear and how does he do with HAs?
Deafdude
November 17, 2009 at 6:47 pm
Hi Michele,
We parents will always feel we could do more for our children
) This coming Thursday my son’s CI will be activitated and he will start auditory therapy next week, 3x a week for the rest of this school year. Oh, he got the CI before the Chloe news came out.
We all make decisions that we’d regret later on or we’d be glad later on… that’s life. I am sure you are doing everything you can do for your son. I hope your son’s ENT keeps you posted on the advances of medical field.
kmayes
November 17, 2009 at 8:16 pm
FYI
Sadly, virtually all major advances in stem cell treatments are happening outside the USA. The ENT will most likely not have a source of information regarding the advances so you must look elsewhere. In fact, years of talking with doctors, scientists and bio-chemists made me realize that the US is years behind the rest of the world regarding stem cell treatments and info.
David Granovsky
November 17, 2009 at 8:30 pm
hi.
I am interested in stem cells to treat hearing loss. According to the form are clinics that can treat hearing loss, but it would be important to decide or tell us to assure us what percentage of cure or improvement in hearing loss. The more data the better. We do not know if we will guarantee an improvement or a cure for hearing loss. Would not it be important to explain, even with evidence, the percentage of improvement?
Would not it be important to explain, even with evidence, the percentage of improvement?
greetings
neuro09
November 23, 2009 at 8:36 am
He can still get stem cells in his nonimplanted ear. It’s a question of when, not if that stem cells will work for the CI ear. Could be 20+ years though. I barely knew anything about CI till 2008 and by then, there was alot of talk and news on stem cells and it was proven successful in animals so I knew it was around the corner for humans. I still expected to wait 5-10 years but am glad at how fast stem cell technology is progressing! Now I may be able to benefit sometime in 2011. Will wait out 2010 as im letting the pioneers go ahead first.
I did make my decision not to get CI and wait for stem cells and am glad for this. Those with CI still have the other ear(bilateral CI is rare) to benefit from stem cells.
David, it is up to people to do their research on stem cells and read the news and come to their own conclusion. I know more and more people are skipping CI and opting for stem cells.
Deafdude
November 18, 2009 at 12:10 am
“it is up to people to do their research on stem cells and read the news and come to their own conclusion.”
Deafdude – I agree 100% and I just want to share the stem cell information that I have spent years compiling and the hearing disorder vs. stem cells info I have spent weeks compiling. I am in touch with some of the top stem cell docs in the world and just want to save people some research time.
David Granovsky
November 18, 2009 at 8:04 pm
for those who plan to go to Live Webchat Schedule Topic: “Development and regeneration of hair cells – the latest news in research”. Asking questions about stem cells and treatment of hearing loss!
Topic: “Development and regeneration of hair cells – the latest news in research”
Guest Speaker: Dr. Douglas A. Cotanche
Date & Time: November 19, 2009 at 9 PM ( EST )
Hearing Loss Association of America
http://www.hearingloss.org/Community/schedule.asp
neuro09
November 18, 2009 at 6:52 pm
[...] desdeStem Cell Treatment For Hearing Loss Has Begun. « Life Seen through Karen Mayes’ Eyes. Categorías:Uncategorized Comentarios (0) Trackbacks (0) Deja un comentario Trackbacks [...]
Stem Cell Treatment For Hearing Loss Has Begun. « Life Seen through Karen Mayes’ Eyes « Neuro09's Blog
November 19, 2009 at 9:34 pm
“Dr Marcelo Rivolta, Senior Research Fellow at the University of Sheffield, tells us how his research could make hearing aids and cochlear implants a thing of the past”.
source: http://www.rnidimpact.org.uk/curingdeafness.html
neuro09
November 22, 2009 at 12:45 pm
seeking information on the website of RNL Biostar I found more information. For those who want more information:
“RNL Biostar offers therapies for a variety of indications. For treatment inquiries, please contact:
Dr. Jin Han Hong
hongjh@rnl.co.kr
301.661.2279″
SOURCE: http://www.rnlbiostar.com/
neuro09
November 23, 2009 at 10:18 am
Hi neuro09,
Thanks for leaving the links on my blog for anyone interested to know about about stem cell therapy.
Mike McConnell’s blog (Kokonut Pundit) discusses it more than my blog, so your suggestions would get more attention on his blog. To be honest, I am not a scientist or anything like that ;o)
kmayes
November 23, 2009 at 11:08 am
On reading the RNL Biostar website, it has some important small contradictions.
The first one is that they treat people with specific disorders of a general nature, such as immunosuppressive (as in the woman mentioned in the interview). They don’t mention deafness or anything with a congenital, genetic or neurological nature.
The second is that it mentions adult stem cells are derived from cord blood, placenta…which aren’t technically adult stem cells but fetal stem cells.
Fat tissue (adipose) is not mentioned till later in another webpage and is cited as able to form new blood supply critical to regeneration. Cancer cells also require new blood supply to survive??
There are no names of researchers mentioned at all. No research papers. No patient studies. No statistics or follow-up. Only one name is mentioned: the contact person for investors interested in cutting a peice of the pie.
A treatment is described which will require the patient to go to Korea for the finalization. Why isn’t treatment finished here in the States? Probably because the FDA hasn’t approved it, which means not enough proof of safety and efficacy is available.
A research facility is said to be built in Germantown, Md. with an opening date of April 25. Which year–this year or next year?
I’d keep on asking questions, friends.
Dianrez
November 23, 2009 at 3:03 pm
“This kind of treatment is very expensive because stem cell are isolated from your own body and expanded in state of the art GMP facility. More over you have to travel to another country to receive stem cell injection because stem cell injection is not allowed in your country yet. The procedure that Chloe experienced is to receive 600 million cells in three separate iv injections. It took 2 weeks for her to finish the procedure. The place for stem cell injection was Kyoto, Japan where we have a contracted clinic and are establishing our own clinic. To reduce your travel cost, you can also visit our Chinese location at Yanji, China. All travel cost is extra. The stem cell cost only may be over $20,000. I am sorry if you expect a promising procedure at affordable price. Thank you for your time”.
source: http://neuro09.wordpress.com/2009/11/24/rnid-org-uk-community-forums-tinnitus-forum-how-far-are-we-away-from-a-positive-treatment/
or
http://www.rnid.org.uk/community/forums/tinnitus/how_far_are_we_away_from_a_positive_treatment_/?pn=3
neuro09
November 24, 2009 at 5:22 pm