Four year old successfully treated with stem cells for deafness!
This breaking news came from Phi4sius. He got the information directly from them.
From Beike Biotech. I have been in touch with them since earlier this year. They responded earlier that they hadn't yet treated Sensorineural Hearing Loss. Obviously, things have changed on that front:
We are also happy to tell you that we have successfully treated two patients with severe sensorineural hearing loss with stem cell. The last patient was discharged last week from our [name removed to protect privacy] treatment center. We arranged some hearing tests for this 4 years old patient before and after stem cell treatment. Also we carried out a treatment satisfaction survey with the parents after treatment. Patient witnessed great improvement after stem cell treatment and was satisfied with this treatment.
Below we will give you a comparsion about the change of related hearing tests before and after stem cell treatment of this patient.
ASSR
Before
Freq. - Right (dB) / Left (dB)
250 - 70 / 70
500 - 91 / na
1000 - 106 / na
2000 - na / na
4000 - na / 98
After
Freq. - Right (dB) / Left (dB)
250 - 60 / 40
500 - 84 / 84
1000 - 74 / 109
2000 - 92 / 107
4000 - 101 / 96
ABR - No significant changes after treatment.
The results can't get anymore scientific than that other than long term studies. More treatments will probably yield more results after what I've seen online.
I have compiled the audiograms from the above information to make it easier to read! This audiogram shows both before and after on the same audiogram. It's crowded and I think I made a couple minor mistakes when compiling that audiogram. But the general idea is you can see that he improved in every frequency! Look how far up he hears at 250Hz! Wow!
This is his after audiogram! He achieved as much as 30db improvement in some frequencies! I was shocked and amazed at his excellent result at 250Hz in the left ear. Hearing unaided at 40db is just amazing! I was hearing at 35db at 250Hz sloping downwards to nothing in the higher frequencies with my old Widex Senso hearing aids! I am so excited to soon get the chance to be hearing unaided better than what many profoundly deaf hear aided! I showed this to my dad and he's all excited for me too! He said that is amazing hearing and I would hear some sounds/speech unaided and with HAs, I would hear alot more speech than I currently do!
Although he responded to every frequency after stem cells, his left ear may still be dead at 1000Hz and above. If they tested 750Hz, he may still have some usable hearing there. Before that, he probably had no usable hearing above 375Hz. So gaining a full octive of hearing is impressive! His right ear improved so much at 1000Hz, it's actually better than at 500Hz(and possibly at 750Hz too!) He has good, usable hearing to at least 2000Hz, possibly even 3000Hz to 4000Hz! We don't know what he's scoring on speech, but we know that stem cells has drastically improved his ability to understand speech, hear sounds, appreciate music and has given him higher frequency hearing which he lacked before!
Let's go over the facts and myths of stem cells!
1. Myth: Big deal, so youll get a 5db or 10db improvement.
Fact: Uh, no. You can get a 30db improvement with today's stem cells and in 3-5 years from now, many deaf people will be seeing more than 40db improvements!
2. Myth: Stem cells is risky.
Fact: Mesenchymal stem cell(MSC) unlike hematopoietic stem cell(HSC) does not produce immune response. Therefore does not require match. No one has ever died or became very ill due to stem cell complications out of over 5000 patients who have gotten stem cells for all kinds of diseases. Stem cells is far safer than any drug or surgery and is rapidly becomming the top choice to treat diseases.
3. Myth: Stem cells for deafness won't occur for at least 30 years.
Fact: Oh really? It's here now! Some labs have been using stem cells to improve hearing as early as 2006. This four year old was treated in 2009 and it's expected that we will see dozens, if not hundreds of people treated and have their hearing improved with stem cells in 2010 and beyond.
4. Myth: Big deal, cochlear implants are better.
Fact: Today, as of 2009, only in some cases but not for much longer. Stem cell technology is only a few years old. Cochlear implant technology is a few decades old. It wasn't till 2005 that cochlear implants became good enough that those who actually still had a little residual hearing were finally candidates. Before that, only those with no residual hearing or so little residual hearing that you scored 0% on speech were CI candidates. I suggest you view the advantages of stem cells over cochlear implants.
5. Myth: Stem cells is unaffordable.
Fact: The price is estimated at $30,000 for stem cells and that already includes travel and other costs. A cochlear implant costs twice that per ear and even if insurance covers that, youd still need to spend a fortune to get a 2nd CI. We all pay with higher insurance rates for something that's borderline elective anyway. I hope insurance doesn't pay for stem cells other than for diseases that could be fatal. No one has ever died from being deaf. Go and save the money yourself or take out a medical loan. Let us afford insurance to treat life saving diseases!
6. Myth: Stem cells won't cure your deafness.
Fact: Not yet, but as stem cell technology matures, it becomes a question of when, not if. The timeframe could be 5 years, 15 years or even 50 years before enough hearing is restored to make you hearing. This is defined as 25db(average) across the audiogram and 85% speech accuracy. It's been observed that even in birds who have a wonderful, natural ability to restore hearing, a 23db HL was the best possibly achieved. Many birds were mildly to moderately hard of hearing, although still not considered deaf.
7. Myth: I have no residual hearing so stem cells is hopeless!
Fact: Today's stem cell technology can restore a total hearing loss(125db HL arbitrary value) down to the 90-100db range. Severe degrees of hearing loss may be improved to as good as 40-60db. You would hear with HAs far better than CI with this much hearing. Remember that a normal hearing person has 15,000+ high quality hair cells per ear and can hear 0-10db HL to 16-20KHz for children and 10-20db HL to 12KHz for adults. Stem cells currently can regrow several hundred medium quality hair cells which work alongside your existing low and medium quality hair cells. Too many hair cells would only cause you to hear worse! Bird's regenerated hair cells were of medium quality unlike the originals which are high quality.
Further comments from me: I plan to travel and get stem cells to improve my unaided and aided hearing. The estimated timeframe will be 3-5 years as I am going to wait till hundreds of others get stem cells before me. I want to see results, audiograms, facts, blogs, etc from the pioneers who go before me. My friend Phi4sius says I may see enough results in less than 2 years for me to go ahead. He's going ahead soon. I look forward to his result and hope he improves alot in his dead ear!
For those of you who say I could get cochlear implant(s) now, I would rather have stem cells even today than a cochlear implant and for good reasons. If some stem cell lab was willing to take me on as a case study at no cost, I would seriously consider! Otherwise I am not in a hurry unlike the parents of that 4 year old. I don't know why the parents couldn't wait a few more years, maybe they were afraid he was falling too far behind on speech development? He might not have had enough residual hearing like I did back then to develop speech and speak clearly. Well stem cells addressed this and his hearing is much better than mine ever was! His parents didn't want to put him thru surgery for a CI. My dad commented that stem cells even today is the better(and arguably safer) choice since you avoid scary surgery! Stem cells can be administered by an injection or IV.
I am waiting a short while because results(and safety) will only improve. I can't afford to spend $30,000 to get it every year. The first time I get stem cells will be for around 40db improvement and the next time I get it will be for enough improvement to let me hear without HAs. I will post more as I get more news and audiograms of others who are pioneers in stem cells. This will give us a better idea of how much improvement to expect among other fators. Thanks for reading. I am so excited for those who improve their hearing and for my day to come!
cool! Seems like we did not call the right person in that hospital a couple of days back, and he did not provide evidence for the improvement.
ReplyDeleteBut still there is one concern that the improvement might be much smaller for adults, as the doctor said while answering our phone call. We have to wait a little bit longer to see. Anyway, I am planning to accept stem cells in 1-2 years or so. This would be far better than I have expected a couple of months back (I thought I need to wait at least 10 years).
HI
ReplyDeleteJust to share, when I got sudden sensorineural heaaring loss in Jan 2009, I did e-mail China Stem Cell website on whether they can treat nerve deafness. There is no news and I am saddened. Then from this month of sep 09, articles about e-mail replies from china centres saying they can treat nerve deafness start to come out. I am really happy. I will let the effect settle down. I am very sure this Berke must be now the talking point among stem cell scientists in the corridors of their cutting edge labs and I won't be surprised some mainstream scientists who want to use stem cell on humans but bar from doing so by their resident countries like US and UK are packing their luggage to go to China to make a earn their pot of gold.
See (i used their contact a specialist):
http://www.stemcellschina.com/
I find it funny the Deaf are throwing excuses why stem cells is so risky or won't work or will take 50 years to happen, blah, blah.
ReplyDeleteA few years ago they said stem cells was impossible. Then scientists proved stem cells worked in mice. Then they changed their stance and said it was impossible in humans. After it was proven to work in humans, they are now saying it's a fluke and won't work for most humans. They have been consistantly wrong and will be wrong again.
Now they are saying stem cells is worse than CI, that stem cells is riskier than CI and that CI is a viable option NOW. I pointed out all the advantages to stem cells over CI, I pointed to the facts that from what we know, stem cells is likley to be far safer than CI. Stem cells isn't risk free, if people are willing to risk CI, what's so wrong about making the choice to risk stem cells? I also pointed if you get CI now, you are stuck with CI for a very long time. I am not missing out by not getting CI, I would be missing out by not getting stem cells if I got CI.
I could go ahead and get stem cells NOW. So much for those saying it would take a lifetime, then 50 years, then 30 years, then 20 years, then 15 years. Now they are saying stem cells is still a decade away. Bet they discover they are wrong in two years when it's all over the news and the evidence is overwhelming. I will be getting stem cells myself in less than 5 years and in as little as two years from now. Ive explained why I choose to wait a short while rather than get it now.
Anonymous, can you get any more audiograms? Do they have an idea of how much children improve and how much adults improve? What do they mean by "a small improvement for adults" can stem cells still give adults a 20db improvement for those with healthy ears, just happen to be deaf? I will be very happy to take a 20db improvement at 125Hz to 2000Hz. Above 2000Hz isn't important so any improvement there is just a bonus.
wongtanlim3, you have some good points. The USA is behind in stem cell technology and their strict regulations could mean that people must travel elsewhere and itll be several years before you can get stem cells in the USA. Ill get stem cells in the USA for an additional improvement after my initial 20db improvement by getting it somewhere like China. Keep emailing those China stem cell labs, try to get more news and audiograms and post it in the comments. Ill update my blog.
We need to see independent verification of this. So far, all we have is one person's statement to YOU from an organization that is apparently willing to reveal just about everything about this patient, except their identity. This is in no medical journals, and you again start making assumptions to state as FACT to debunk "myths" of stem cells for hearing loss. Where are you getting these "facts" from? From a doctor? From a scientist? I don't think so. So stop making stuff up, or stop posting what others can't prove.
ReplyDeleteA doctor Omar Gonzalez located in Progreso Nuevo, Mexico charges about $10,000 for placenta stem cell therapy and he has had several people report improvements in their hearing. There are no audiograms provided but the testimonials are from people I have talked to. One person reports his hearing improvement has remained and the other reports his hearing diminished again after about a year. The person who's hearing improvement has remained has had more than one treatment.
ReplyDeletehttp://www.aculongevity.com/
http://www.youtube.com/watch?v=sBCK4tZLhbk
hi duke
ReplyDeleteyour comments have my strongest support.
Readers can discern / judge for themselves whether your facts are made up stuff.
Dennis- I'm the one that posted the audiograms on alldeaf. I didn't reveal the patient's identity because I don't have permission to plaster their identity all over the internet! Plus, I doubt they would like me plastering their identity all over the internet either. These are facts, which don't require your curiosity or belief to be fulfilled to exist. You can use Google right? Just find the organization's web site, fill out the patient request form, and ask questions. You posted a rude comment asking for verification when, if you had any desire to perform verification yourself, you would go to Google right away to find the organization's web site mentioned in the post and perform such verification yourself. Interesting approach from someone who apparently wants independent verification yet their first action is to lash out irrationally to those that posted this information.
ReplyDeleteAssuming this is all true, the results don't look very impressive to me. So what if he can hear 40 db at 250 hz? He still has a moderate-severe hearing loss and would need to train his brain to understand speech if he wore hearing aids. Look at the audiogram - he STILL has a hearing loss. And they say they've successfully treated it?
ReplyDeletehi
ReplyDeleteJust to share, even 1 dB improvement is a big leap in human history.
Since the birth of medicine, dating hundreds of years, every experts give nerve hearing loss the death sentence.
That is why the focus is to find a human-made device to alleiviate hearing loss and therefore the hearing aids and then in 1984, the CI is born.
Then 3 years later , in 1987 , 2 teams of scientists discovered birds , after deafened , can hear again. So then and only then , scientists start to seriously find a treatment for nerve deafness.
20 years have since passed and much has been learned. It it very very difficult to find a cure because the cochlear is just 5 mm and hidden behind the human strongest bone. Then there is the 8th nerve which connect the cochlear to the brain. It is very very near , just 1 to 3 mm away from the facial nerve.
Therefore any possible surgery that can be invented will most likely harm then do go. All types of innovative ways are then devised to get round this problem eg injection, using a pump, using nano technology, using virus etc.
Then there is Bush. He is personally responsible for the state of the stem cell development (or lack of it) in the world leading medical country for 8 years !!!
Any way, back to the 1 db. If there is 1 db this year, then there can be 2 db improvement next year, it is not if, but when a true cure is coming
Nabeel,
ReplyDeleteA 40db loss, even at 250Hz allows you the ability to hear some sounds and loud speech unaided. That's something a CI can never ever give. I want to hear something without HAs instead of a silent world.
A severe hearing loss, something Phi4sius has can be aided better than CI. He has about 80db loss and can be aided up to 10db. A 100db loss can still be aided to 30db. I expect stem cells to get my loss down to 80db then with powerful HAs that offer 70db average gain, be aided to 10db!
I expect stem cells that improves natural hearing to require much less training time than CI because CI is a different ballpark with electrical stimulation. Stem cells will give me more of the acoustic kind of hearing which my brain is already used to!
Yes, he still has a hearing loss but has enough hearing to benefit from HAs. CI destroys your residual hearing and makes you 100% deaf. Stem cells makes you less deaf! If CI doesn't work, you are screwed. If stem cells don't work you keep your residual hearing and just don't improve.
Have you read all the advantages of stem cells over CI in my previous blog post? If you disagree with any of them, point it out and ill be happy to clarify.
Hi folks, I just got more information from the hospital in China which is treating hearing loss with stem cells.
ReplyDeleteThey treated one 53 years old patient last year, who lost his hearing for more than 10 years. After six treatments, he could drop the HA from his right ear, and his left ear also got improved. The patient feels pretty good himself.
Another case is a patient with both optic astrophy and hearing loss due to surgery, four months after treatments, his hearing was almost totally back (my note: in this case, the hearing loss might not be due to death of hair cells, but damage to hearing nerve).
Recently, they were treating an one year old baby, and the improvement was obvious even during the treatments. There were several more cases, some of them got significant improvemtents, some did not.
Since there are only a few cases in total, they can not gurantee everybody could get significant improvement, but the success rate is pretty high already. For those who are not under tight economic circumstances, it's worth a try. They claim that the treatments is very safe.
Anonymous - Thank you for the independent confirmation. That is incredible! He was able to drop the HA from his right ear completely?! Did they go into detail about how much his left ear improved?
ReplyDeleteObviously improvement depends on several factors - whether or not the auditory nerve was completely/permanently damaged - the length of time of hearing loss - and so forth. But, the fact that that guy had more than 10 years SNHL and improved to normal hearing is really impressive. Assuming everything is intact and hasn't been destroyed due to surgery, improvement seems to be pretty likely. Obviously, it seems as if such success depends on how someone reacts to the stem cell treatments right?
Anonymous, do they have any audiograms or any idea how "bad" their hearing was before? We don't know what they mean by "near normal" it could be 40db at 250Hz sloping down to 100+ db in the other frequencies. Yea that 250Hz is near normal but not the rest. You could hear without HA but nowhere near normal.
ReplyDeleteI was wondering if any lost residual hearing or otherwise heard worse after treatment than before? To my knowlege, stem cells doesn't destroy residual hearing like CI almost always does. Those who failed to get significent improvement, did they still get *any* improvement? Again, we want to see audiograms as this is the best proof of how much each person improved.
The more pioneers who get stem cells and have their audiograms shown, the sooner me and Phi4sius will go ahead. At a cost of $25,000 plus travel, this is still expensive. Not only that, but there's a 3-5 week stay in the hospital so it requires time as well. I am going to want a "significent" improvement on the order of 20db in every frequency or a 40db improvement in the low frequencies or some combination of this.
Deafdude, two things.
ReplyDeleteYou say a CI can never give a person the ability to hear speech. That's patently false and we both know that. Sure, it's not "unaided" but even at 40 db at 250 hz, that audiogram shows that the person still misses 90% of the speech sounds above 250 hz. Nobody can understand speech with that audiogram, unaided. So we're back to HA or CI.
So what if the CI is electrical simulation? The hair cells generate electricity and that electricity simulates the auditory nerve in normal ears. The CI does the same thing, only bypasses the damaged hair cells.
And my advice to you is, I would temper your expectations of stem cell treatment. Even if it works, you still need to adjust to the middle to high frequency sounds and that can take a while especially if you have not heard them most of your life. Same story with a CI... and that's if stem cell treatment actually proves to work, and your HAs help you hear even more.
Now, as Dennis said, I want to see independent verification of this.
The article looks interesting, but I second Dennis and Nabeel that we need to have all facts proved.
ReplyDeleteLet me clarify, a CI can give the ability to understand speech aided, but not unaided. If you don't wear the processor, you hear nothing. With stem cells, you still hear sounds and maybe even speech without hearing aids and with hearing aids, you hear alot more. I would really love to hear *something* unaided instead of the silent world I am in.
ReplyDeleteTheres so many advantages to having some ability to hear unaided. Did you read those advantages in my previous post? I know that his audiogram is not good enough for speech unaided, but it will at least give him ability to hear some sounds.
The hair cells do a better job of stimulation and naturally. Also CI has only 22 electrodes while a normal ear has 15,000 hair cells. Stem cells could give me perhaps 1000 more hair cells to hear with. That's potentally 1000 more different pitches that I can discern.
There's no IFs about stem cells working, it works on deafness and many other conditions. I have realistic expectations. Stem cells doesn't cure other forms of diseases, but it does offer an improvement. I don't expect my deafness to be cured but to be improved. Ill either be less deaf or if I get a great result, ill be HOH instead of deaf. I am prepared to adjust to my new level of hearing. I did this when I got new HAs. Stem cells will be like new HAs all over again times ten. HAs will take my improved hearing and amplify that even further.
I will try to get more informtion from that hospital, including audiograms. Meanwhile, you guys could also try to contact them by email or ask your family to call them (85-532-80653989, 80653375, 80653905). They are doctors speaking English. I am not sure if should post the email address here, but I can send this to several of you if you are interested.
ReplyDeletesorry for the typo, phone numbers should be 86-532-80653989, 80653375, 80653905
ReplyDeleteAbout the patient who got almost hearing total back after stem cell treatments, I saw this news a couple of months earlier. My impression based on Chinese expressions is that the patient does not feel hearing impaired anymore, i.e., close to or better than 20db in all frequencies.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteThis comment has been removed by the author.
ReplyDeletehi
ReplyDeletethanks for the update
Anonymous, thanks so much for your information! We await audiograms!
ReplyDeleteThe Deaf and those involved in Deaf culture are starting to get rude/hostile towards stem cells! Their arguments are weak and when that doesn't work, they resort to insults! We know they see stem cells as a threat to Deaf culture and their way of life. They probably know that the hearing will do their best to persaude the deaf to get stem cells.
Ive never told anyone to get CI because I know CI has it's limitations and involves surgery and other risks. I wouldn't even get CI myself when there's so much better out there such as stem cells. Most people can still hear some with HAs anyway so they don't need CI in the first place. Not getting CI lets you save both ears for stem cells.
That hearing lady who forced CI on her daughter is ironically against stem cells or at least doesn't believe stem cells will be a viable option for at least 20 years. She responds with weak arguments and rudeness at any mention of stem cells, yet she pratically thinks CI is a cure and even fails to realise that many people can hear quite good with properly fitted HAs! I bet her daughter could have been hearing pretty well if more effort was made to fit her with different HAs and try out transposition. She had enough residual hearing for this!
hi
ReplyDeleteFor me, I will leave the Deaf culture to their own beliefs and not trespass into their territory, but they must also respect my wish to have my hearing loss restored by whatever works. If they try to block the cures due to their own fear that the cures would diminish the deaf culture, I do not think it is right.
Each human should be free to choose their own choice.
As for mother making a choice for their babies, I am ok as long as it is legal in that country meaning it is accepted by the majority of citizens in that country through their elected representative in parliament / congress . As CI is legally recognisable device, I guess I have nothing to say.
Did no one else note that is said that ABR showed no change...That could very well mean that a 4 year old got bored during the first hearing test, stopped responding right away or at all. Then the second hearing test the child was more focused and responding. I work with kid in audiologists offices all the time. The ABR can't be "cheated" but an audiogram can, espcially by a kid. That alone makes me skeptical.
ReplyDeleteABR isn't very accurate. There have been babies who "passed" but later "refer" and vice versa. A 30db difference sounds more than any "margin of error" due to differing response. Others have gotten stem cells, including adults and they reported both an objective(aka audiogram) and subjective(aka I hear more) improvement.
ReplyDeleteMy friend emailed the Beike Website and they say currently you can get up to 30db improvement in hearing. They also said of 6000 people they treated for all kinds of diseases, none got a 100% cure but the majority experienced some extent of improvement. It improves the blind from seeing just darkness or light perception(20/20000+) to something much better like 20/2000. They become less blind and many can see shapes, large objects, colors, motion, etc. It makes the deaf less deaf and they may hear with HAs as good as CI and without HAs, hear some moderately loud sounds just as it lets the blind see large objects.
I am going to wait for stem cell technology to improve and for the pioneers to go ahead and ill see their results/audiograms. I should get at least 20db improvement and may get 30-40db. This won't cure my deafness, but neither will a CI cure me either. Even birds who can regenerate their own hearing still end up with a mild to moderate hearing loss. Stem cells will however let me hear as good or even better than CI with powerful HAs at a lower cost and risk and avoid surgery.
The reliability of ABR is quite high. The reliability of evoked otoacousitc emissions is not. I think you have your tests mixed up.
ReplyDeleteI have seen kids with perfect hearing test as a profound hearing loss on audiograms one day because they are bored, a moderate loss the next, and then perfect hearing another day. It happens - and often.
A lady(who I will keep anonymous/private) says I was mentioning her and her daughter in my blog. It could be anyone, I will not disclose who! No one knows who I mentioned because I did not disclose any names, not even the name of the 4 year old who got stem cells. It even says [name removed to protect privacy]
ReplyDeleteI have to be honest when I say that I know many people who failed to try proper HAs. I have the freedom of speech to say this as long as I keep the names private. I do not speak for anyone in particular, but in general as this applies to everyone who didn't try proper HAs before getting CI. As to the audiologist being "experts" I was fitted for HAs in 2005 and I heard worse than with my 1998 HAs. I was fitted again in 2008 with proper HAs and that audiologist said whoever fitted me in 2005 was incompetent and an idiot. He even said that because I have proper HAs, he can't guarantee ill hear better with CI!
I am not singling anyone out. When I say a lady, this was only one of many examples. I know many other men and women with similar experiences. I know a different lady who failed to try proper HAs before getting CI which let her hear at 30db. Proper HAs would have gotten her much better than 30db hearing in the low and mid frequencies and transposition would let her hear the highs. No, I am not going to disclose her name or who she is. Anyone can claim to be "that lady" it's possible several other people had an experience just like "that lady" if you want to share your experience, please post an Anonymous comment here.
My reply to Anonymous: They should be testing children several times as well as giving ABR. The above article says that the patient did improve and is happy. Adults have gotten stem cells to and they likewise have improved. I read that adults get somewhat less improvement than children
Deafdude, anyone from AD knows exactly who you are talking about when you reference the "hearing mother" who allegedly forced a CI on her daughter. It doesn't matter if you use names or not, it is still considered slander and harassment and I pretty sure police in most states would agree.
ReplyDeleteIt is not my intent to slander/harass anyone. This is why I kept it anonymous/private. Besides, all the information is already on AD. We know that she forced CI on the daughter. If she wanted to keep it private, she can have all her posts on AD removed and ill remove it from my blog as well even though no one outside AD knows and those from AD already know. She choose to make the CI story public on AD so this is nothing new and again, no one outside AD knows as I kept her name anonymous/private.
ReplyDeleteIf "forced" is too strong of a word, ill say that the CI was chosen for the daughter at a very young age before she was old enough to decide for herself. I am not singling her out, this story rings true for all parents who choose CI for the child before the child is old enough to decide him/her self. I would never, ever choose CI without letting the child grow up and have a say in this. I have no idea if the child wants CI or is happy with HAs this is why I am waiting. Besides most deaf people get alot of benefit with properly fitted and programmed HAs, I know as I was one of those. So I stand by what I said when I strongly disagree with any parent(hearing or deaf) who chooses CI for their deaf child.
Her daughter did decide herself. She wanted it and she is happy with her implant.
ReplyDeleteNot everyone has the same success with hearing aids. Because you do doesn't mean her daughter did. You aren't an expert in her family, in her daughters life, or in hearing health care. Back off and leave her alone. She made the decision that was right for her family and her daughter. She is giving her daughter access to both the Deaf and the hearing world, raising her bilingual and bicultural and giving her more opportunities for language development during the critical period for language development (which is something I know about and can speak to as a linguist).If she had waited a few years, or many years for stemcells she would have risked her daughters ability to develop spoken language.
I didn't read anywhere that her daughter decided on her own for CI, but you are right, she is happy with her CI results. I am never mean nor do I wish anything bad. I only wish she was successful with HAs like I am. It's very possible that trying different HAs and transposition would have helped her like it helped me. I don't get full benefit from HAs but they give me alot more than 0%. Her daughter has alot more residual hearing than me so the chances with HAs are much better.
ReplyDeleteI never claimed to be an expert, but I would have gotten a 2nd, 3rd, 4th, 5th opinion from other experts who know how to properly fit and program HAs. I tried new HAs back in 2005 and that audiologist didn't know how to properly program them so I heard worse than my old HAs from 1998. I saw a different audiologist in 2008 and I hear so much better with the same HAs you wear. It's possible if I tried a few other HAs, I would hear even better. No one can rule this out till it's been tried.
There is alot of controversy surrounding implanting CI on babies and young children. Your own Deaf friends would agree that the children should wait till they are adults or at least old enough to decide. I will let my children(if I ever have any) as well as the children of my brother and sister decide themselves instead of having the parents decide.
We both know that deaf/Deaf people are just as capable as hearing people. Hearing aids gave me access to sounds and speech. I will of course give HAs to any children in my family and they will be capable of learning how to speak clearly, understand some speech, read lips and do everything else. Being deaf does not make you inferior so why should it be treated as such? I was born deaf and I can do everything except hear normally. When I communicate with others, they don't even know im deaf unless I tell them. That's because we are perfectly capable!
I still want stem cells to make me less deaf so I can get much more access to sounds and even speech. I am great at reading lips and having access to speech will simply be another way for me to understand others. Lipreading is not inferior, just different. Stem cells are my choice as an adult. I respect any adult who can make an informed choice. There is no risk to developing spoken language as I had proper education and training as a child. Being deaf does not make us any less capable and we all know this. I consider everyone capable of being able to develop spoken language with or without HAs/CI. Those are just tools to access sounds. The real tool is your brain and we aren't dumb! All we need is the same education as hearing people and we will be just as capable!
For those who say I have no clue what im talking about, I am going to defend myself.
ReplyDeletehttp://deafdude1.blogspot.com/2009/04/try-every-ha-before-ci-this-guy-now.html
Why get CI when the right HAs programmed correctly can get you from 20% to 80% speech? He has the same HAs I have. If I had a little more residual hearing, id be scoring 80% speech too!
http://deafdude1.blogspot.com/2009/04/profoundly-deaf-man-scores-over-90.html
Profoundly deaf man scores over 90% speech recognition with hearing aids! It just goes to show if you put enough time and effort into getting properly fitted with HAs, you can score as well as a CI!
hi duke
ReplyDeleteHow did you learn to speak without CI ? I am curious because I read that the 1 of the advantages for CI is that children can learn to speak before their brain lost this ability when they reach 3 years old. I read that if they do not have CI, then they cannot learn to speak and if they are 3 years old, that's it, they become mute as well.
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ReplyDeleteGetting back on topic about discussing stem cells rather than CI, ill address your replies.
ReplyDeletewongtanlim3,
I learned to speak because I had residual hearing which HAs amplified. It is a myth that you can't learn to speak unless you are hearing or have a CI. The deaf are perfectly capable of this if they get speech training! Any mute deafs you see were simply denied the education and speech training that I got. They only learned sign language.
Miguel, I would need to see before and after audiograms of that case study. It's possible the hearing loss is due to some other condition or paralysis rather than sensorineural loss. My friend has emailed the China stem cell labs and so far, no one has improved more than 30db for sensorineural loss(SNHL) but I know it's possible to improve more than 30db as stem cell technology matures. How good you can eventually hear remains to be seen.
However in birds that have a wonderful natural ability to regenerate their hearing, none ended up better than 23db HL and some birds didn't improve better than a moderate loss. If stem cells ultimately can let humans regenerate their hearing as well as birds, the best possible hearing would be maybe 20db, but that's still considered normal. Many people would see unaided hearing in the range of 30-50db which is good enough to hear most sounds unaided and be aided to 0-10db with cheap mini low power HAs.
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ReplyDeletehi Duke
ReplyDeleteHave you thought of be a motivational speaker ?
You can tour America and tell the deaf's babies mothers what you have said ie it is not always the case that CI will aid deaf babies to talk. Like you have said, proper speech training would also do the job, at least for those deaf babies with residual hearing.
By doing so, you present a real life example to demolish some scientists' advice to not-so-informed-parent-of deaf babies that if a baby is born deaf, no choice, go for CI or the baby become a deaf mute.
Surgery always carry risks. All the more so for babies , who are more susceptical to infection.
Also any surgery into the inner ear is not simple. There are a lot of crucial nerves near the cochlear and the hearing nerve the 8th nerve. For eg the 7tn nerve is very near and any accident would paralysed the face.
If not for your information , I will still be 'tricked' into believing that for all deafened babies (don't care whether they have residual hearing or not), the only way not for them to become a deaf mute is to go for CI.
Might it be some selfish people want to push for CIs to earn the monies ??
Miguel, we have enough proof to know that stem cells works. We don't yet have proof that stem cells can cure anything. It can, but not with todays stem cell technology.
ReplyDeletewongtanlim3, Refer people to my blog and they can learn alot about deafness and stem cells. My friend says that the China stem cell labs have been getting lots of emails about hearing loss treatment. This is good news because it means people are learning of this as an option and are interested! The more people learn about stem cells, the more pioneers will go ahead, the faster stem cell technology will advance and the sooner we can be next in line to get stem cells!
yeah
ReplyDeleteI am pretty certain not a few but many people are seriously going to China.
This can only be good.
Look at spinal injuries. After China has treated spinal injuries using stem cell and thousands of Americans flown there to get treatment, the current US administration lifted the previous ban on public funding on stem cell research and the US pushing ahead with clinicl trial. They said politics should not stand in the way of science and all that, but I feel it is more on the US administration (and the rich lobbyists) not letting others milk the citizens' monies : if there is any milking, the US companies should do it !
With the millions of US dollars to be milked from spinal injuries patients and their insurance coy, and strong pushing from the current US administration and rich lobbyists (who own the stem cell coy) , suddenly the FDA's usual 5 to 10 years time frame before they approve human clinical trial become a few months affair.
ReplyDeletehi wontanlim3, your statement on that FDA is speeding up to approve stem cell clinical trials is very interesting. That's very good news to every patient, which would further reduce our wait time. Any link for related information?
ReplyDeleteSee :
ReplyDeletehttp://blogs.abcnews.com/theworldnewser/2009/01/stem-cell-block.html
http://www.scientificamerican.com/blog/60-second-science/post.cfm?id=fda-approves-first-human-embryonic-2009-01-23
(I read from 1st article that there is something in Obama lifting the ban that prompted FDA to approve the tests faster rather than slower. In the 2nd article, I read the application before FDA has been 4 years already !
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ReplyDeleteThanks guys for the news! Keep it comming!
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteStem cells can repair/replace/regenerate any cell in the body. This is why I am waiting for stem cells. Not only will it replace my missing hair cells in my ears, itll repair my auditory nerve. I suspect my auditory nerve isn't in great shape for the higher frequencies since it's been so long since I heard the highs. But im not worried if stem cells doesn't give me usable high frequency hearing. HearAgain hears better with 6 high frequency electrodes disabled. I can always try out transpositional HAs. Only 10% of speech information takes place above 2000Hz. Stem cells would also repair any other defects in my body besides improving my hearing. I could consider it a general health tuneup
ReplyDeleteAnyway should be clarified.
ReplyDeleteUsually sensorineural hearing loss in most cases is because they have damaged or absent hair cells, ie inside the cochlea. Hearing loss is the cochlear nerve, and rarely is the auditory nerve that runs from the cochlea to the brain. If the auditory nerve is retrocochlear hearing loss is very rare. So I tend to think that the majority, a vast majority of cases of sensorineural hearing loss is damage to the hair cells in the cochlea. For example, I have sensorineural hearing loss, I did not have the nerve auditory evoked potential, what I did last week and showed that the nerve is well, that is the nerve that runs from the cochlea to the brain, the problem is in the cochlea in the hair cells. Then should be able to distinguish well what about when it comes to loss or nerve deafness sensorineural ...
One very interesting news on delivering stem cell: snort stem cells to get them to brain. Please google this sentence for related news. I have problem to copy and paste link here.
ReplyDeleteIf this method could be proved to be safe, we could easily snort stem cell to treat our hearing loss. Isn't is amazing?
hi
ReplyDeleteYes, the things the bright scientists can think of is really amazing, isn't it?
But I always wonder how come no one has tried cochlear transplant, like they do for kidney, liver, heart transplant or even the equally challenging eye cornea transplant?
Say , they can get consent from a recent-dead person to transplant his good cochlear to another who needs it.
In terms of physical side, it will be bigger than stem cell which is bigger than a gene. So transplant might be easier.
Or perhaps they can clone the cochlear from the deaf person own tissue and transplant it back ?
ReplyDeleteSeems like scientists have tried to transplant cochlear, but failed, because the tranplanted one can not get connected with existing nerve. Unlike skin or muscle, nerve cells won't heal or regenerate themselves, thus tranplaning cochlear won't work.
ReplyDeleteTo me, I perfer stem cell therapy even if tranplanting cochlear is available, since the later would be a big surgery with huge risk.
This is very encouraging given that I am profoundly deaf with one cochlear implant.
ReplyDeleteI'm glad that I saved my other ear for stem cell treatment, so please keep me updated!!! :)
Also, does stem cell work on my ear with existing cochlear implant or do I need surgery to take out the cochlear implant?
My bet is stem cell could improve the sound quality of the cochlear implant by growing more sprial ganglion cells in the cochlear. This improvement might be more significant than that to your other ear, but we don't know now.
ReplyDeleteIn the fugure, if stem cells could almost completely recover your hearing in your other ear, it could be the time to take out the cochlear implant and let stem cells to fit in. However, I guess it's much much harder for stem cell technology to completely cure deafness, than to improve the hearing somehow.
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ReplyDeleteYou can have stem cells injected today. Can't get much easier than that besides taking them in pill form or snorting them.
ReplyDeleteNo one with a normal cochlea will get a transplant when stem cells can regrow the missing hair cells. I could see a cochlear transplant an option 15 years from now for those with damaged cochleas(ossification, scarring, former CI, etc)
Marty, it's believed that those who have a CI won't achieve good results with stem cells as far as hearing restoration goes. Maybe stem cells can give a slight improvement to your auditory nerve so you hear 5db better with CI but is it worth the $30,000 cost for that? You could get stem cells in your virgin ear and that could be the better ear than the CI ear. Could be 15 years before stem cell technology matures enough that it can give decent improvement in the CI ear to get better hearing than CI.
A partial improvement(20-40db) is in the bag. Ive shown an audiogram of this 4 year old getting 30db improvement at 250Hz and several other frequencies. I predict a full improvement could take 15 years but a partial improvement is available today! I am getting my partial improvement after the pioneers.
Hi guys, sorry I got no detailed information from the hospital I meantioned earlier.
ReplyDeleteToday I queried another hospital in China which also claimed they could treat hearing loss with stem cells. They claimed that have treated four patients with hearing loss, and the average improvement is 20 db. One of the patient got improvement > 30db, and could then took his HA off. I asked but they did not provide audiograms for this patient.
Hi Anonymous,
ReplyDeleteWere you able to get "before" and "after" audiograms of any of the 4 patients? I don't need to know their names or information, just the decibal number at different frequencies. When they say 20db improvement is the average, is this at every frequency? Would you say their improvements are similar to the improvement the 4 year old achieved? Id love to see more audiograms of other patients!
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ReplyDeleteThis comment has been removed by the author.
ReplyDeleteThis news from UK is very attractive. Any details?
ReplyDeleteif there any year it was done, easier for us to search.
ReplyDeletePersonally, I believe UK is not so 'fast' on using stem cell to treat nerve deafness in human ear , at least not as fast as, say China. But the news are coming out from there bit by bit , so need to wait a while for the picture to clear up there.
This guy points out exactly why the culturally Deaf are against stem cells and to a lesser extent, CIs.
ReplyDeletehttp://kokonutpundits.blogspot.com/2009/09/will-deaf-culture-die-out-someday.html
I am still waiting for more audiograms of stem cell patients. I am also curious when(if) stem cells can give alot more than an average of 20db improvement. If so, down to what HL can one ultimately get to? 40db HL? 30db HL?
Furthermore,
ReplyDeleteCan 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)
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ReplyDeletehi
ReplyDeleteI have also e-mailed Berke and they give more or less the same info ie one of their Chinese hospital at Guangdong has treated a 4-year-old USA patient boy who has meningitis which seriously affected his hearing and they give the same results. They have treated another but he did not improve.
I must say they are a honest lot and did not bluff. They can easily say they treated both with successes.
Anyway, I must say it did not detract from the fact that they offer a chance to anyone who is willing to try stem cell.
warns us that still is not the time to offer guarantees or provide information about the success or effectiveness of treatment, I guess they are still in a very experimental stage and should await more results. The most important thing is that it is "possible" treatment and I hope more and better news.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI eagerly await more and more information which will become possible with time. I am curious if anyone has any idea on the rate of improvement. Today it appears that 75% of those get at least a 10db improvement in their hearing. Average improvement is 20db and a lucky few get over 30db improvement!
ReplyDeleteAny candidate today can go out and be a pioneer in getting stem cells for deafness. Any idea when there will be a guarantee, say if you don't improve at least 10db youll either get additional stem cell treatments free or get a partial refund?
Im also wondering if they have treated anyone who was born deaf like I was. I read somewhere that they did and the infant experienced a huge improvement in hearing!
Are the stem cell clinics expecting a growing number of patients who wish to treat their hearing loss or deafness? They should have their results posted as testimonal and provide "before" and "after" audiograms. There's plenty of testimonals for stem cell treatment of blindness and many other conditions so we know stem cells does work.
That link is broken. But you did post in AD that the center is located in Tijuana, Mexico. They have treated 900 patients since 2003(wow that's early!) and they can treat total deafness now! How many patients have they treated for deafness/hearing loss and how much improvement was achieved and what % didn't improve? Were any who were born deaf treated? The cost of $20,000 is way cheaper than CI!
I could fly to San Diego(or some other airport) and visit Phi4sius who lives in CA. Together we could drive to Tijuana once or twice a week for cord blood stem cell treatments. This would save us thousands in travel and hospital fees over going overseas to China or some other country!
Phi4sius says we could get our chance as early as 2010! Would we see a dozen case studies per stem cell clinic and overall over 100 who have successfully been treated for deafness? I know it's available today if you want to be a pioneer and find a 20db improvement acceptable but no guarantees yet. I would be happy with as little as 20db improvement, it's a realistic expectation.
hi
ReplyDeleteWith permission, I have reproduced the correspondences I have with Berke below (names changed) :
Please seek appropriate medical opinion / advice before any medical decision is made :
_______________
Hi Wong Tanlim
Yes, this is fine. But please don't use my name or the name of the child.
Thanks for asking
B
On Wed, Sep 30, 2009 at 7:26 AM, Tanlim Wong wrote:
Can I have your permission to paste the below on the internet , so that more can read the work being done at Berke ?
--- On Tue, 9/29/09, B wrote:
From: B
Subject: Re: Fw: Re: Fw: Re: Fw: Stem Cell Treatment for wongtanlim
To: "Tanlim Wong" Cc: "inquiries"
Date: Tuesday, September 29, 2009, 3:19 AM
Dear Wong Tanlim
This boy did show improvements and his hearing increased following treatment.
We have had an increase in the number of inquiries since treating this child, but the process from inquiring to treatment usually takes a few months so the number of people we have treated has not gone up yet.
Beike has all the necessary approvals for treatment in China, and we are given permission to operate in some of China's leading hospitals. All treatment protocols are rigorously researched and approved by our Chief Medical Director prior to treatment taking place. We have treated around 6000 patients, both Chinese and International, so far and our safety record is excellent.
If you have any further questions please do not hesitate to ask
Sincerely,
B
On Tue, Sep 29, 2009 at 10:58 AM, Tanlim Wong wrote:
Dear B
May I asked whether for the 4-year-old boy, his ABR did not show signs of improvement ?
Also I would like to find out whether patients with purely sensorineural hearing loss are now arriving in Berke / related hospitals to seek stem cell treatments now that the news is out that such a treatment is now available at Berke / related hospitals ? Also is such a treatment approved to be safe by the China's authorities.
--- On Mon, 9/28/09, B wrote:
From: B
Subject: Re: Fw: Re: Fw: Stem Cell Treatment for wongtanlim
To: "Tanlim Wong" Cc: "inquiries"
Date: Monday, September 28, 2009, 2:42 AM
Hi
The ABR is the Auditory Brain stem Response - it is a type of hearing test performed on young children to measure their hearing ability.
The other patient did not supply the hearing test results but I know that they did not have any significant improvements in their hearing ability...
If you have any other questions please feel free to send me another email
Sincerely,
B
On Mon, Sep 28, 2009 at 8:29 AM, Tanlim Wong wrote:
hi
What is the ABR results?
Also is there any improvement for the other patient's and can you provide the audiogram for that patient ?
2nd part below because system error message informed post of more than 4000 words need to be broken into shorter posts
ReplyDelete--- On Fri, 9/25/09, B wrote:
From: B
Subject: Re: Fw: Stem Cell Treatment for wongtanlim
To: "Tanlim Wong"
Cc: "inquiries"
Date: Friday, September 25, 2009, 1:28 AM
Dear Wong Tanlim
Our company has treated two cases of sensorineural hearing loss, one was in a 4 year old boy who just finished treatment a few weeks ago. I have attached for you below some information and hearing test results before and after treatment for him:
Country: USA
Age: 4
Diagnosis: sensorineural hearing loss
Reason for coming for treatment: A got meningitis, when he was 3 months old and he lost his high frequency hearing
Treatment center: Guangzhou Provincial Hospital of Chinese Medicine
Treatment: 6 Umbilical cord blood stem cell injections
Before the treatment: A’s hearing has been seriously affected by the meningitis. His parents sometimes find that he doesn’t respond to them, especially when the sound is at a high frequency level.
After the treatment: It was first noticed by the center nurses that when A was playing with them, he seemed to be more coordinated and fast-responding. He can hear some low sounds and voices that was hard for him to hear before. His mother was very satisfied and happy to notice the changes after the treatment. If possible, she wants to come to China again for more injections.
Below is a comparison about the change of ASSR test before and after stem cell treatment of this patient.
ASSR:
Before After
Freq.. - Right (dB) / Left (dB) Freq. - Right (dB) / Left (dB)
250 - 70 / 70 250 - 60 / 40
500 - 91 / NA 250 - 84 / 84
1000 - 106/ NA 1000 - 74/ 109
2000 - NA/ NA 2000 - 92 / 107
4000 - NA / 98 4000 - 101 / 96
I hope this is helpful for you, please let me know if you have any further questions or want of more information
Sincerely,
B
On Thu, Sep 24, 2009 at 11:27 PM, Tanlim Wong wrote:
I have sudden nerve deafness aka sensorineural hearing loss in my left ear since jan 2009. I have seen many ENTs and undergone MRI and noted there is nothing serious. But they said there is no cure . They said my hair cells probably have been damaged by a virus.
I like to know whether your coy has treated similar cases?
3rd part :
ReplyDelete--- On Mon, 9/14/09, B wrote:
From: B
Subject: Stem Cell Treatment for wongtanlim
To: wongtanlim3@yahoo.com
Cc: "inquiries" Date: Monday, September 14, 2009, 8:53 AM
Dear wongtanlim,
Thank you for your inquiry about stem cell treatment for nerve deafness . My name is B and I will be the patient service representative assisting you through the medical and registration process. My job is to make the registration process as simple as possible and answer any questions you may have.
part 4 :
ReplyDeleteBelow, I am providing some general information about our treatments followed by information more specific to your inquiry. I have also attached to this email information and press booklets. The Information Booklet contains more specific treatment and registration information and you can find many news stories about our past patients in the Beike Press Booklet. Also, we are always uploading newly completed video interviews of patients of all diseases. You can see a collection of these video interviews at: http://vimeo.com/user290654/videos Please let me know any questions you may have after reviewing these booklets, the patient videos, and the email below.
While stem cell treatment is still a very new science, our stem cells have been used to treat over 4000 patients with various diseases in more than twenty hospitals. Since 2006, over 900 of these patients have come from countries outside China and we are currently offering treatment to international patients at five centers in China and one center in Bangkok, Thailand. A majority of the patients treated, depending on the disease and/or injury, state they regain some type of function in terms of movement, balance, sensation, vision, and body control.
Our patients are treated using stem cells from the umbilical cord, umbilical cord blood, and/or the patient’s own bone marrow. Throughout the process, the umbilical cord blood stem cells are never frozen and are kept fresh to ensure the cells help heal to their full potential. For most diseases and injuries, we may recommend 5-8 stem cell injections. Treatment takes about one month and depending on the number of injections and treatment center, the cost of treatment ranges from US$17,000 to US$34,000. After our doctors review medical information and make a treatment recommendation, I can then discuss more specifically the cost of the proposed treatment.
part 5:
ReplyDeleteI am providing you with the link to our online Initial Medical Information Form. Please go to the provided web address and fill out the form with as much medical information as possible (I can provide a Microsoft Word version of this form if you have any trouble accessing it). There is no cost or obligation to receive treatment when this form is submitted to us. It will only be used by our medical staff to help provide further treatment recommendations and advice. This medical form contains a section labeled “Additional Medical Files.” In this section, you will be able to upload test summaries and doctor reports from you hospital directly into the online medical form. For all patients, our doctors will need to review discharge summary of important treatment (such as any surgeries or hospital stays), a diagnosis report from a doctor, and/or a medical report from a doctor about the patient's current condition. You will be sent a confirmation from us when the form has been received. As soon as you wish and are comfortable doing so, please submit this form. Please note it usually takes 1-3 business days for the doctors to review the medical information and it is possible they will request more medical information if needed. If the doctors confirm that treatment can be provided, I can then continue assisting you with the registration. The Initial Medical Information form can be accessed by using the following web address: http://stemcells.wufoo.com/forms/initial-medical-information-for-beike-clients/
This medical form contains a section labeled “Additional Medical Files.” In this section, you will be able to upload test summaries and doctor reports from you hospital directly into the online medical form. For all patients, our doctors will need to review discharge summary of important treatment (such as any surgeries or hospital stays), a diagnosis report from a doctor, and/or a medical report from a doctor about the patient's current condition. For nerve deafness patients, there are additional mandatory medical files our doctors will need to review. These are listed below. If you have trouble receiving these documents or sending them to us, please let us know.
Mandatory Medical Documents: Test or doctor's summary of a CT or MRI, audiologist report
We know that many patients and caregivers are interested in visiting a treatment center. Our treatment center coordinators can provide patients with a tour typically lasting 30 minutes to one hour. If you are interested in visiting a treatment center, please let me know and I can provide you with all the necessary instructions for arranging a visitation time. Please note that the visitation must be arranged and confirmed at least 15 days beforehand and the visitation can only be arranged after the patient's full medical information has been reviewed by our medical department doctors.
I hope this information has been helpful. Please let me know how I can assist you further and do not hesitate to send me any questions you may have. You may email me or call any time. My phone number is +
Sincerely,
B
--
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ReplyDeleteI don't understand what you mean, but todays stem cells is able to regrow at least a few hundred hair cells. It improved the hearing of this 4 year old who had SNHL. Stem cells will improve my own SNHL due to me missing most of my hair cells.
ReplyDeleteThis comment has been removed by the author.
ReplyDelete[URL="http://www.sciencedaily.com/releases/2009/03/090323093129.htm"]http://www.sciencedaily.com/releases/2009/03/090323093129.htm[/URL]
ReplyDeleteThey were able to formulate conditions that allowed for the progressive differentiation into neurons and hair cells with the same functional electrophysiological characteristics as cells seen in vivo.
"The results are the first in vitro renewable stem cell system derived from the human auditory organ and have the potential for a variety of applications, such as studying the development of human cochlear neurons and hair cells, as models for drug screening and helping to develop cell-based therapies for deafness," say the authors.
My comments: Stem cells can regenerate both hair and nerve cells! Perhaps they meant that their stem cells can give more of an improvement for nerve than hair cells? The thing is most deaf people have SNHL which means damage to the hair cells. Those with damage to the auditory nerve would not get good results with CI anyway. For them, stem cells is the only choice if they want to hear speech/sounds.
Furthermore, stem cells gives an average of 20db improvement in hearing for most people who have been pioneers for stem cells. Most deaf people have a functioning auditory nerve so the 20db improvement in hearing must be comming from regenerating perhaps a thousand hair cells. Normal hearing is 15,000 hair cells. Stem cell studies on animals have proven that stem cells does regenerate hair cells!
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ReplyDeletedeafdude hello, it's true what you say that stem cells are capable of differentiating hair cells and auditory neurons, so it is also treatable hearing cells, hair cells and nerve. I have just been informed that in theory if possible, the problem is lack of experience. We need more clinical experience is still so new that they can not promise improvement.
ReplyDeleteThat's why I am waiting around 3 years, this is plenty of time for the pioneers to have gone ahead and for us to see results from the dozens of pioneers. The stem cell labs will also build alot of experience for hearing loss/deafness and other conditions. In the next 3-6 months, we should be seeing more "before" and "after" audiograms from the next dozen or so pioneers.
ReplyDeleteAnother thing to consider is that the "after" audiogram was taken about a month after the first stage/round of stem cell treatment. Improvements may continue for 3-6 months after the last stage/round of stem cell treatment has been administered. So we should know of a followup at the 3 and 6 month points post treatment. While they report a 20db average improvement, was that after 1 month? There very well could be another 10 or even 20db improvement after 6 months!
A 30db improvement in my case would give me enough residual hearing to be aided to 0db in the low frequencies, 10db in the mids and 20db in the highs. This is better than CI in every frequency and id have more access to sounds and speech vs. an average CI result of 30db across.
On another note, some fear that stem cells will make you hearing and they don't want to be hearing because they want the ability to enjoy silence while sleeping. Ive tried to explain that stem cells today or anytime soon is not capable of a full restoration. A 30db improvement will put me in the moderate-severe deafness category, ill be less deaf than I am now.
Maybe 15 years from now, stem cell technology will be so advanced that it may be able to get you as good as 20db HL unaided. Of course those who don't want to be hearing can simply get less stages/rounds of treatments. You can keep getting additional stem cell treatments till you are happy with where your hearing is with HAs. There is no need to keep spending tens of thousands on stem cells once you attain enough improvement to get full benefits from HAs unless you wish to be hearing and not want to wear HAs.
hi all
ReplyDeleteI am also in the waiting list. Maybe when the technology matures, we can made an appointment together and have the treatment.
hi deafduke
ReplyDeleteI need you to thank you . When i was at my lowest, your blog really help lift me.
Thanks
You are most welcome, wong! Id love to get stem cells together with Phi4sius, you, miguel and anyone else interested. It's possible that the stem cell labs may offer a 20% discount for group treatments. Also we would be able to compare our results and audiograms and learn more!
ReplyDeleteBy the way, someone said:
"I am actually very much pro-stem cells. They offer the possibility to cure Type 1 diabetes, many types of cancer (one of my good friend just had a stem cell transplant to cure his cancer) BUT having worked with stem cells and the auditory system I know that it will be a long time before they will cure deafness."
My reply: He never wants to talk about stem cells for deafness and has no interest in getting stem cells for his own deafness. Most deaf people are like that. They are fine with stem cells for deadly diseases but not for deafness. They see it as a threat to Deaf culture and they also believe that being hearing is bad. Well, there's nothing wrong with deafness and there's also nothing wrong with being hearing. I wish the deaf would have more respect for hearing people. Don't be surprised when hearing people don't respect the deaf because respect goes both ways!
The fact you don't want stem cells for your own deafness is your choice and I respect this but don't go bashing stem cells for those who wish to improve our own hearing. I won't ever tell you that you "need" stem cells or a cochlear implant. I do tell people that they have the choice of HAs, CI, stem cells and there's no wrong choice. Those who are happy with HAs, great for you then! I choose stem cells and that's my choice.
I keep correcting people that stem cells is not a cure(yet) but people keep failing to understand. It indeed will be a long time(around 15 years) before stem cells can cure deafness. However stem cells today has been proven to improve your hearing by an average of 20db. This person has proven that stem cells on mice has made them less deaf! When stem cells makes me less deaf, of course I will attain much more benefit from HAs. This is my whole point of me getting stem cells in 3 years! 15 years from now, ill get stem cells again to make me hearing and not need HAs.
I agree. But we need to leave the deaf culture people to do their own thing. We need to preserve our energy, zeal, etc not for a more important goal ie finding a cure for ourselves who want to improve our hearing.
ReplyDeleteThe deaf culture people , well, let us leave it to their own devices.
Isn't there people who refuse to take medicine ?
If GenVec work faster, then we will benefit earlier !
ReplyDeletehello, I'm trying to understand the meaning of the phrase. I'm Spanish, and therefore have difficulty with English. I read it but sometimes do not understand the meaning of the phrase. My question is if you are experimenting with humans or is in the pipeline. If you are in preclinical stage would not be talking to candidates for human ... See if someone explained the meaning of the phrase: "GenVec is currently in lead selection for the human candidate for adenovirally delivered AtOH1"
ReplyDeletethanks!
My reading of it suggest that the company is trying to determine what criteria to set to test which group of human. Eg those with hearing loss for 1 year or less ? Then there is also the age group. How old ? Then hearing loss due to dr ug ? loud noise ? infection ? unknown cause ?
ReplyDeletethanks for the clarification!
ReplyDeleteI understand that now, if I mistake not, is not in the preclinical phase, but now is seeking candidates rights? Genetics is another option, apart from the stem cells. The more we share information better.
greetings
http://www.genvec.com/go.cfm?do=Page.View&pid=3
ReplyDeletehttp://www.genvec.com/download/2006%203.0%20GenVec%20ATOH%20%20Summ%20FINAL%20OUT1.pdf
This is great news! It has been demonstrated in animals, such as mice to give a 30db improvement! One mouse went from 75db HL to 45db HL! It's not a cure in the sense it won't make you hearing but it can improve your hearing to where you can be aided to 0db with HAs and score on speech tests well into the normal range. Itll let you hear some sounds and a little speech *unaided* which is something a CI can never do!
"Positive Results For Hearing Loss & Balance Disorders. The underlying adenovector delivery technology has been proven safe in thousands of patients across a range of diseases and proof of concept of TherAtoh has been established in multiple preclinical models. The program is positioned to be quickly advanced into the clinic".
ReplyDeletesource: http://www.allpennystocks.com/aps_us/company_spotlights/archives/gnvc.asp
Hey Guys,
ReplyDeleteAs a late deafened guy all this sounds great, but don't you think you are clutching at straws a bit?
I mean people like Heller tell us this type of treatment is years away. I don't want to dampen anyones enthusiasm but i think you need to be realistic!
None of this evidence is backed up anyone respected in the medical world hence the reason that you have to try so hard to get information on it.
Sorry guys, I wish we could all get treated asap but i think it will be many many many more years until we can
Let me comment using quotes from the article:
ReplyDeletehttp://aao-365.ascendeventmedia.com/Highlight.aspx?id=101&p=4
[QUOTE]Of the 30 million hearing-impaired individuals in the U.S., the vast majority are sensorineural in nature, with current state-of-the-art treatment including hearing aids, middle-ear implants, and cochlear implants, he said. Hearing aids present the real drawbacks of appearance stigmas, acoustic feedback, frequent battery changes, and discomfort and irritation. Also, hearing aids generally fall under the increasingly exclusive purview of audiology.[/QUOTE]
How do they define "hearing impaired" and even those who show a mild or high freq. loss on the audiogram, if they function like a hearing person, should they be considered hearing? It's silly to be ashamed of HAs, no one will make fun of you. I point out im hearing impaired and they don't care, I am treated with respect just like the rest. As for feedback, this is a thing of the past unless you are so vain to try CICs which suck. My batteries only need to be changed twice a month, big deal. CIs need daily battery changes. My HAs and molds fit properly so there's no real discomfort/irritation.
[QUOTE]"Otolaryngologists and otologists will need an edge to compete in the hearing aid market, and that edge will be middle-ear implants because audiologists cannot perform surgical procedures," Dr. Glasscock said. "It's the middle-ear implants that represent the greatest unmet medical need."[/QUOTE]
MEI's are as much of a "medical need" as refractive surgery for the eyes. Glasses do the job fine, so do HAs and for those who are so deaf that HAs don't work then CIs offer a chance but even CI isn't a "medical need" because there's nothing wrong with being deaf and CIs won't cure your deafness anyway.
[QUOTE]Patients not faring well with conventional hearing aids will respond much better with either partial or total-device middle-ear implants, a technology considered "beyond" hearing aids and "before" cochlear implants, he said. Two partial middle-ear transplants (Med-El Vibrant Soundbridge and Ototronix Maxum) have been approved by the FDA, and two midde-ear devices are under FDA review (Otologics Carina TIMED Implant and Envoy Medical's ESTEEM Implant).[/QUOTE]
MEI's don't give better hearing than HAs, but CIs do have the potental for better hearing vs. HAs for those with little or no residual hearing.
[QUOTE]The most sophisticated technology to date, the cochlear implant, depends upon the brain to achieve success. In the future, they will be totally implanted with no outside microphone or sound processor, he said. Amazing advances are also occurring in implanting cochlear devices, including the percutaneous cochlear access using a microstereotactic frame, as well as robotics.
Worldwide, 125,000 patients have received cochlear implants, and future goals for those devices call for total implantation and a reduction in price points to make them available for millions of people worldwide.[/QUOTE]
The future is stem cells, not CI.
[QUOTE]"In children, the most important thing to remember is that the current cochlear devices destroy residual hearing," Dr. Glasscock said. "Children being implanted today may well see a time in their lifetimes when hair cell regeneration is possible, and we should strive for preservation of residual hearing."[/QUOTE]
This, among other reasons is why I don't believe in forcing CI on children unless they had no residual hearing to begin with. Adults can make their own choice if they gotta have instant gratification and a chance to possibly hear better now with CI vs. HAs or make do with HAs and save their residual hearing till they can get hair cell regeneration. I am getting stem cells experimentally either by clinical trials or will travel overseas.
*continue below*
[QUOTE]In fact, he called the potential for ear hair cell regeneration the Holy Grail in otology.[/QUOTE]
ReplyDeleteThis will replace all other technologies except HAs only because those with mild to moderate losses(and in some cases, severe) may decide it's not worth the huge cost(could be $100,000 in America) for a very small improvement. Ive been reading about this and it's been shown that up to a 60db loss, properly fitted HAs can aid you to normal for sounds and very near normal for speech.
[QUOTE]Other species (birds, fish, reptiles, and amphibians) experience vigorous ear hair cell regeneration throughout their lives, so researchers are seeking to unlock this mystery and make hair cell regeneration a reality through stem cell therapy, gene therapy, or molecular modulation (drug therapy).[/QUOTE]
It's true there's no deaf animals within those species, but it was shown in chickens that the best possible hearing they could recover down to was 23db HL after having their hearing damaged. Also the more damaged their hearing was, the worse their hearing was after recovery.
[QUOTE]"There are important safety considerations in hair cell regeneration work," Dr. Glasscock said. "Transplanted stem cells may form tumors or attack the host.[/QUOTE]
Not umbilical cord stem cells, they have never caused tumors or serious side effects.
[QUOTE]He also offered a prediction about when mid-21st century otologists would be able to cure both conductive and sensory forms of hearing loss.
"From discussions with knowledgeable researchers, everyone's best guess is sometime in the next 20 years," Dr. Glasscock said. [/QUOTE]
Some forms of conductive losses can be cured today but studies have shown that conductive losses can be aided to normal because there's no damage to the nerves/hair cells. Stem cells can improve(but not cure) SNHL today! I am getting stem cells in the near future so I can attain a 30db improvement in my hearing. Ill decide in 20 years from now if it's worth the huge cost to improve further and end up with a mild unaided hearing loss. Id be able to hear quite well aided with 30db improvement and still benefit from blissful silence by removing my HAs. I have no conflicts with myself being hearing or mildly HOH, the biggest reason would be the huge cost(possibly $100,000!) for a small improvement over what HAs could aid me down to after I get my initial 30db improvement which would be the biggest improvement by a mile.
hi
ReplyDeleteAny one has any update on the following :
See :
http://blog.cordbloodbankingnews.com/2009/03/center-for-regenerative-medicine-cord.html (external link, opens new browser window)
No updates yet, perhaps Miguel has updates.
ReplyDeleteHi everyone, I've stumbled upon your blog and your discussions just recently and now feel not so alone. I am 29 years old and had sudden hearing loss in one ear earlier this year (Jan 2009). I was diagnosed with SSNHL and am left severe hearing loss in that ear. All this time, it's been tough coping and adapting. I found it difficult for the people around me to understand exactly what I was going through. Your blog has reminded me that I am not alone on this. And reading all the news about stem cell research as a possibly treatment option now, I would really like to explore this option too.
ReplyDeleteWhen I was first diagnosed, I learned there are different types of hearing losses. Do you mind if I ask how you all lost hearing?
-sp
I too have SSNHL. This is a fantastic article. I hope further improvements will follow after this seemingly successful treatment!
ReplyDeleteI am going to be the 100th comment on my own blog. Stem cells is a reality today. I posted about "Chloe gets stem cells and doesn't need HAs anymore!" I have emailed that stem cell lab. Right now im learning as much as I can and getting all the answers and learning about results from the pioneers. One of my friends with single sided deafness might get stem cells summer of 2010, if he does, id like to go along with him and get it myself at the same time.
ReplyDelete@deafdude..
ReplyDeletereally informative blog. I have SNHL and Severe tinnitus.
lost my hearing due to TMJ and noise polluation at work place
Does anyone have a contact number to where stem cell is available to improve hearing impaired?
ReplyDeleteYou can check out RNL BIO, they treated Chloe and a few others.
ReplyDelete4 months post treatment, the below shows my hearing. L = Left hear before treatment, L1 after treatment. The results are in dB's. I would like to get the treatment done again as I think that I would gain an extra 20-25db, but I cannot afford another $20,000. Had I known what I do today, I would have asked Cryocord in Malaysia (who did the treatment), to store some of my fat . That way I would not have to get Liposuction done again, which cost approximately $4000. I think that it is best to get round 1 done, then round 2, 6 months later, so your body does not start recognising the stem cells as invaders and your immune system reacts accordingly.
ReplyDelete1000 L:0, L1:0, R:0, R1:0
1050 L:20, L1:10, R:10, R1:10
2000: L:10, L1:10, R:0, R1:0
3000: L:35, L1:10, R:25, R1:0
4000: L:65, L1:30, R:30, R1:10
6000: L:70, L1:50, R:65, R1:40
8000: L:75, L1:55, R:70, R1:500
L Francis
8000: L:75, L1:55, R:70, R1:50 I meant.
ReplyDeleteL Francis
It's a good idea to do adequate research and learning beforehand. Good luck!
ReplyDeleteIsn’t it amazing that you can store your own strong cells for future use may be after 5 or 10 years down the lane. With stem cell therapy it is possible to treat many chronic diseases with his/her own good cells that to without any side effect and at an affordable price.
ReplyDeletestem cell treatment center
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ReplyDelete