Thursday, August 18, 2011

L Francis gets 20db improvement with stem cells! Mine and his audiograms included!



Here's more proof(click to enlarge) that stem cells works, much to the shock of anti stem cell loons. Yet again, they have been proven wrong and will keep denying the wonders of stem cells. Meanwhile, me and my parents grow more and more excited for each and every successful case we read about. A big thank you to Francis for sharing his amazing success story! We can conclude that stem cells is indeed capable of achieving 0db hearing as well as improving hearing at every frequency, even at the highest frequencies! His 20db improvement coincides with the average improvement other successful pioneers attained.



This is my audiogram(click to enlarge) from 8-15-2011. It's similar to my previous audiograms give or take 5db. The bone conduction thresholds were vibrotactile. My speech awareness thresholds measured 85db HL in each ear. This means I can't even hear a shout unless it's less than a foot from my ears and forget about understanding a word! I also got new earmolds that day, hope they fit my ears snugly and comfortably.

Update: I came and they don't fit and produce feedback so I had them remade. This blog post is shorter than usual, but I will be posting more posts soon. I am still on track to get stem cells within 2-4 years once all the pioneers have gone ahead and their results are known. Technology also will be better and the average improvement will increase to 30db from today's 20db average.

267 comments:

  1. Hi, This post is a bit unclear,but I follow you regularly in the hope that Prisha too would benefit and so will the entire deaf community.This is a miracle we are all waiting.

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  2. "Imperial Innovations commits £5M to Autifony"
    source: http://www.hearing-aid-news.com/imperial-innovations-commits-5m-to-autifony/

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  3. Can you please provide more details on where you had this procedure? Thanks for the eye-opening post!

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  4. Hello,
    Can you explain us who is L Francis, where is he from, and in which clinic he took stem cells?
    If is it true information, it will be a great news! 20db improvement is very helpful because I think that some missing frequencies will be back, for example frequencies higher from 1,5-2 kHz. This frequencies is very important for understanding a speech.

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  5. Just read the comments on this blog !!!

    L.Francis is from Australia and got the treatment from Cryocord in Malaysia.

    He has shared all his experiences regarding the treatment in the comments section (like this one) on Deaf Dude's previous three posts.

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  6. I've just written the company to see if what DeafDude says is true and to get the kind of relevant information Deaf Dude conveniently leaves out (amount of patients treated so far, success rates, risks). I'll keep you posted if they respond.

    The other company DeafDude wrote about never responded to my queries. I suspect the procedure had no consistent track record and they weren't willing to go out on a limb about it.

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  7. I would like to know more about it. Please let me know about the companies dealing with this procedure.

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  8. I don't think they have treated more patients so DeafDude is not leaving out any info on purpose. He's just re-posting what L.Francis reported after getting his first audiogram post treatment.

    What i don't understand is why DeafDude's so reluctant to get the treatment ?? I always thought he wanted to become a stem cell pioneer but now he says he'll wait 2-4 years...

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  9. It's clear that he isn't as convinced as he pretends to be.

    Given the lack of peer-reviewed studies or scientific work in the field, as well as the high cost of treatment by potentially bogus companies operating outside the USA, this is a very reasonable stance to take.

    The question is why he just doesn't admit it.

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  10. I just heard back from Cryocord.

    My query to them: "I've read on the Internet that you are using stem cells to treat people with hearing loss and have had some success. Can you provide me with some information on the treatment, including cost and hearing improvement that can be expected?"

    Their response: "Thank you for writing in. Indeed we have done a case on hearing losses using autologous adipose derived Mesenchymal Stem Cells. It was a treatment protocol given by the patient who has done intensive research with some of his doctor friends. It was a 3 part i.v injections over a period of almost month. Although autologous stem cell treatment is safe, there is insufficient evidence that it could treat hearing losses. Despite this, it was noted by the patient to have increased hearing ability and this would improve over time. The cost is US25k including a little fat harvest by a plastic surgeon. I hope this information is of help to you. Thank you."

    Anyone out there want to drop 25,000 dollars on a treatment that has been given to only one patient so far? And does anyone want to go through with this treatment when the company itself writes that there is "insufficient evidence that it could treat hearing loss"?

    As I said, DeafDude talks a big game, but he's not being completely upfront about the facts. So far, I have only been able to confirm two cases worldwide where stem cell injections have been used to treat hearing loss with any degree success. I have repeatedly asked DeafDude to provide evidence of other supposedly successful cases, but he is always elusive, providing only links to websites where there is only talk about treatment but no proof. (Part of this problem, I believe, is that he doesn't understand what scientific evidence is.) These two cases are simply too small a sample to make any claim about the effectiveness of the procedure.

    I think a lot of people reading this blog don't understand that the kind of therapy that will bring replicable results - involving delivery of hair-cell regenerating stem cells to the inner ear - is different from the stem cell injection treatment DeafDude is pinning all his hopes on here. In order to develop this first type of treatment, a great deal of research has to be done on which stem cells promote hair regeneration and how these can be isolated and delivered to the inner ear. Even people with little knowledge of science will understand how complex this problem can be. The stem cell injection therapy that DeafDude writes about is essentially based on the idea that you can just inject stem cells into the body and they will cure all ills. There is really no attempt made to understand the reasons behind this and thus improve or even guarantee the effectiveness of the treatment. This is why the medical community doesn't take it seriously (DeafDude calls them all "loons" but it is simply due to his poor understanding of scientific procedure).

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  11. Thanks for the comments everyone.

    1. I used to want to be a pioneer after Chloe got stem cells, but my parents suggested I wait for more results, including a few results of people who were born with a hearing loss like me. I am not in a hurry and can wait 2-4 years for more results and the technology to further improve.

    2. Thanks for sharing the email with Cryocord. The $25k cost is 25% the cost of bilateral CIs(a dead end old tech), if anyone can afford $100k for two CI, they surely can afford $25k for stem cells and always "fall back" on a CI(which destroys residual hearing) should stem cells not work.

    3. A few dozen people have gotten stem cells for hearing loss and there's a 50% chance of getting around 20db improvement. You can email various stem cell centers for more info, share it here too. I will go ahead when at least 75% of people improve their hearing.

    4. I have already shown articles in my blog of stem cells working in animals, feel free to search. Now they are doing the same with humans with 50% success and improving every year. Injecting stem cells is the best and safest way to go and the stem cell centers I've emailed have made this clear.

    5. The medical community in my country(United States) is a bunch of anti stem cell loons. They will pretend stem cells doesn't work and will try to sell you dangerous drugs/pills instead which might treat your disease(with plenty of side effects) instead of curing it(and saving lives) like stem cells does. Far more profit in repeat treatments than an outright cure. Regardless, more and more people are waking up to the wonders of stem cells(not just for deafness!) and eventually, every country worldwide must offer stem cells!

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  12. Im with you deafdude. Just read an article today where they are talking about treating baldness with stem cells. Although growing hair on ones head is quite different than the inner ear, I would guess if they think treating baldness is important hopefully they will see deafness and hard of hearing is much more important. Keep up the faith and positive attitude. I enjoy your feedback from your resources.

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  13. Dear Deafdude. I too have been in contact with some labs across the country. One of them in particular is a very prestigious medical university in California. I have made contact with the scientists who are working on stem cell inner hair cell regeneration. The good news is, I have to agree with you that what I have found is that they have accomplished many goals towards this treatment. However the bad news is they have told me that the reason why this specific treatment has not reached clinical trials yet is because of lack of funding. That's right, no money. Well go figure. I specifically got this out of them because I asked them why it was that every time I turn around there is a stem cell trial of some sorts going on, for example: Spinal Cord Injury, Blindness (macular degeneration), heart attack stem cell trials, stroke, heck Rick Perry's back from Texas and the list keeps going on and on. The reason why these trials are going on is because there is a ton of labs, scientists and most of all Big Pharma money funding these trials. So the goal that I have set for myself is to educate the many out there that want hearing treatment like you and I to start supporting and donating towards these particular studies for stem cell inner hair cell regeneration. Believe me if Big Pharma was behind this research you would see FDA approved U.S. trial occurring right now. We need to figure out how to bring this research to light so that it can start receiving the funds and recognition needed in order to get this treatment into human trials.

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  14. Why wouldn't "Big Pharma" be interested in researching stem cell treatments for deafness? If they developed a treatment, they would make billions. You think they don't want to make money?

    My guess is that although there have been some interesting and promising developments, a viable treatment in still years off. I also think that the reason Stefan Heller's operation at Stanford (if that's what you're referring to with your "prestigious medical university") saw its funding cut was because their initial results weren't all that good.

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  15. Your first question why would Big pharma not be interested is exactly what many of us are wondering. There are a couple of studies going on that I am aware of. There is a partnership between Genevec and Novartis as well Sanofi and Audion Therapeutics. Both Novartis and Sanofi are Big Pharma. I wouldn't discount the fact that there is viable treatments developed, especially when you look up the two studies I have just mentioned in this post. However they are not specificaly Stem cell treatments, they are gene therapy and small molecule based regenerative medication. I do believe the ability to regenerate hearing in mammals including humans is out there. We just need to sit back and wait until big funding gets involved. I have researched this for over 4 years and have read numerous studies of where they have regenerated hearing in mammals through stem cells, gene therapy etc. We all need to stay positive and support these studies when possible. Thank you.

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  16. more info:
    http://www.actiononhearingloss.org.uk/your-hearing/biomedical-research/all-about-hearing-research/what-is-being-done-to-help.aspx

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  17. Big Pharma are indeed VERY interested in stem cell therapies. That's why they're busy buying all kind of patents regarding stem cell treatments - they don't wanna be left outside when this treatments are finally available.

    The thing with stem cells is they are not drugs, so they fall outside the area of control of the Big Pharma - however that won't stop them having their piece of the cake as they're actually trying to get as many patents they can for all medication needed to support the treatments. Again, stem cell treatments pose a big challenge for this companies as it turns their business model upside down (definitive treatment versus longtime or lifelong medication).

    One thing is sure, Big Pharma recognizes the huge potential market in hearing loss and related problems (tinnitus, vertigo) so big companies like Novartis and Sanofi are investing in specialised companies like Genvec and Audion Therapeutics. Other companies should be added to the list like Auris Medical and Otonomy - basically they're all looking to fill this big (and very profitable) gap (as right now there's no medication to stop / treat hearing loss and associated conditions such as tinnitus or vertigo). Bear in mind, per example, in the US they're more Meniere's Disease sufferers than Alzheimer's.

    It's been said quite a few times that re/ hearing regeneration it's gonna be a race between stem cell therapies and drugs - there's research on both fronts so whoever hits the market first will win. Just a few days another Big Pharma company, Glaxo Smith Kline (GSK for short) announced it was investing 1.3 millions of pounds (uk sterling) in a biotech spin-off (Autifony Therapeutics) devoted to treatments for noise-induced hearing loss and tinnitus. Apparently, they wanna start human trials in 2013.

    http://www.bioportfolio.com/news/article/777266/Gsk-Invests-In-Biotech-Start-up

    http://www.inpharm.com/news/165362/gsk-biotech-uk-autifony-therapeutics

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  18. I wonder what the situation is in Canada (state of research on Stem Cells) compared with the United States? We didn't have to deal with the Bush administration...

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  19. Canada has and does face the same regulations that have plagued the U.S. from advancement. See below clipped from an article.

    Regulations governing stem cell research in Canada have existed since 2002. Ethical guidelines and federal laws regulate government funding and prohibit particular acts related to stem cell research.
    1. Origins
    o The initial regulatory framework for stem cell research in Canada are the Canadian Institutes of Health Research's Guidelines for Human Pluripotent Stem Cell Research, which offer ethical criteria for the approval of scientific research grants. The CIHR established these guidelines to address rapidly evolving science while ensuring ethical and scientific oversight.
    Ethical Guidelines
    o Federal government funding for stem cell research is regulated by the Canadian funding agencies' Tri-Council Statement: Ethical Conduct for Research Involving Humans and the CIHR's Updated Guidelines for Human Pluripotent Stem Cell Research 2007.
    Laws
    o Established in 2004, the Assisted Human Reproduction Act prohibits particular activities related to stem cell research including creating in vitro embryos for research and accepting payment for stem cell research tissues. According to Stem Cell Network, Canada's Food and Drug Act is also applicable as stem cell therapies are biologics and must be approved by Health Canada for use in clinical trials.
    Governing Bodies
    o Stem cell research grants require approval by an interagency Stem Cell Oversight Committee, local Research Ethics Boards and, where applicable, an Animal Care Committee. Assisted Human Reproduction Canada is the federal agency responsible for licensing stem cell research activities.
    Future Regulations
    o As technology advances and public opinion changes, stem cell regulations in Canada will change as well. Ethical guidelines are constantly updated and federal regulations continue to evolve.


    Read more: Do Regulations Exist in Canada Regarding Stem Cell Research? | eHow.com http://www.ehow.com/facts_6389897_do-regarding-stem-cell-research_.html#ixzz1XOofJDKy

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  20. progress with Genvec/Novartis (atoh1)??
    http://www.actiononhearingloss.org.uk/community/forums/tinnitus.aspx?g=posts&m=50620

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  21. Canada faces nearly the same scrutiny the U.S. has. All of this is changing daily. Just type in Stem Cells in your internet browser and you will almost see a new development occuring daily with stem cell research in the U.S. It is sad to think how far ahead we could be if the politicians and courts did not prohibit this research for such a long time. The lifting of the ban for embryonic stem cell research has certainly helped this research and adult stem cell realities are now finally able to speak their benefits, especially as it pertains to having nothing to do with human embryos like embryonic stem cell research. Both of these stem cell studies are equally important but I think many are starting to realize that Adult Stem cells are the future for regenerative capabilities.

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  22. "Sanofi-aventis and Audion Developing New Treatments for Hearing Loss
    Audion Therapeutics, Amsterdam, Netherlands, announced that it has entered into a 2-year agreement with Sanofi-aventis to develop new treatments for hearing loss through a regenerative medicine approach".
    source: http://investorshub.advfn.com/boards/read_msg.aspx?message_id=66991340

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  23. "A Review of Gene Delivery and Stem Cell Based Therapies for
    Regenerating Inner Ear Hair Cells"

    source: http://www.mdpi.com/2079-4983/2/3/249/pdf

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  24. The mdpi.com site is a great read. Good job! Again let's hope we all get to see this research come to fruition.

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  25. "PROMISING RESEARCH – Cord Blood Stem cell treatments for hearing loss"
    source: http://hlaakc.com/2011/09/16/promising-research-cord-blood-stem-cell-treatments-for-hearing-loss/

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  26. Wow! Actual clinical trial beginning! This is great news!! Let's all hope it is successful as it will hopefully be tried on adults as well if it works for the children.

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  27. Thank you very much for amazing blog.
    Most of publications describe possible treatments for non-genetic hearing loss.
    Does somebody know if any studies going regarding genetic hearing loss (Connexin 26)?
    Thank you

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  28. Stem cells already works on some adults(such as Francis in my blog) for hearing loss, so it’s quite likely that several or even all of those babies will see an improvement. If so, we will then see our first clinical trial for adults in the United States using their own adult stem cells. Remember that anyone can get stem cells overseas, but at this point, the treatment is experimental with no guarantees. I am waiting for the pioneers to have gone ahead and for this technology to mature some more, then I am next.

    As for genetic losses, such as Connexin 26, you may still achieve partial improvement with stem cells(I explain this in detail in a previous post) and wait for 2020 for a genetic cure to further improve your hearing. I probably will get a genetic test before getting stem cells so I know what to expect. Thanks everyone for the links to stem cell articles.

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  29. "Groundbreaking Clinical Trial Launches to Treat Hearing Loss"
    source: http://www.hearingloss.org/content/groundbreaking-clinical-trial-launches-treat-hearing-loss

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  30. As long as Scientist do not have the resource/funding to carry-out stem cells therapy, it would be very difficult to convince others whom do not believed stem cells can work.

    A lot of scientist are now more confident that stem cells are safe but they need to do a human trial in order to know more and it's efficacy.

    The results from Stephen Heller were outdated years ago but not now. If he says that, how is he going to get funding in future. In fact, he had groung breaking news from animal testing. It only the problem of getting funds to further his research was the problem. Like all scientist, they have problem getting funds. even rich people like Bill Gates to not donate to such cause. I think it's important that if we can get rich people to help speed up Biotech research to create a cure, it would certainly help scientist to develope one.

    I posted to a site "ask a doctor" column whom is a ENT Professor(Phd), he does not believed there will be any stem cells therapy soon as he is skeptical and not even a human trial.

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  31. Those scientists need to move to a country that isn't run by a bunch of anti stem cell loons. They will then get their funding or better yet, be able to open a stem cell clinic and start treating people today.

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  32. Vitro Develops Novel Stem Cell Technology for Use in Treatment of Hearing Loss
    source: http://www.marketwatch.com/story/vitro-develops-novel-stem-cell-technology-for-use-in-treatment-of-hearing-loss-2011-10-04

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  33. I found two comments in my spam folder, but those comments were not spam. When I marked "not spam" those comments accidentally got deleted. Oh well, I read them and I will respond best as I can from memory.

    1. Big pharma is indeed buying up patients, but they don't have a monopoly on stem cells. They will have to compete in price and quality with all those stem cell centers overseas. No one will get stem cells in the USA for $100,000 if they can get it overseas for a third the cost and their stem cell technology is several years ahead to boot.

    2. I read about a drug method to treating hearing loss, but stem cells is safer and available now. Also the drug method might only work in those with sudden hearing loss or those who were recently deafened. They say that stem cells and genes are likely to work far better for those born deaf like me.

    3. There is nothing ethical about delaying lifesaving adult stem cells which can treat deadly diseases, not just deafness. Those poor patients have to be able to afford stem cells to save their own lives and they have to be healthy enough to travel overseas to get those stem cells. The governments in all countries needs to approve a humanitarian exemption where stem cells can be legally done "off label" to treat patients with deadly diseases and possibly save their lives. Insurance or government should pay for the stem cells for anyone too poor to afford the chance to save their own lives.

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  34. Hey Deaf Dude, could you give me some details, i would like to contact you. Im a 1st timer on here and need some advice. My daughter - is 2 years old and has hearing loss. I will go through it properly with you via email??? I dont know how these blogs work. Thanks

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  35. Feel free to read my previous posts on this blog, there's alot you can learn. Ask any questions you have, my answers will be of use for the others who read my blog. Get her the best hearing aids and make sure you find a competent audiologist that programs them so she hears at 20db or better and don't let anyone push her into a risky, deadend technology such as cochlear implants when stem cells is cheaper, safer and better.

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  36. To put the statements made here into perspective, here's some info from the Heller Lab website (Stefan Heller is one of the leaders in hair regeneration/stem cell research for hearing loss:

    Patient Inquiries

    In the past months, we have been overwhelmed with inquiries from patients and parents of children with hearing loss asking for advice about hearing disorders and novel treatments. The large number of inquiries make it impossible to answer all requests personally. Our laboratory is performing basic research on inner ear sensory hair cell regeneration. At this point, I am unable to tell when or if our research will result in clinical trials in the future. Clinical trials for stem cell applications to the inner ear are not planned at the moment, and there is no wait list or any other kind of list that you can enlist.

    About cochlear implants:

    Cochlear implants are working devices, and particular for a young child it is important to allow the child to hear as soon as possible, which ensures proper speech and communication development. Do not wait for a cure that may or may not become available! Please always consult with a health care professional/otologist as well as audiologists.

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  37. I wouldn't want to push people in getting cochlear implants. I know too little about them. I just think it's good to know that reliable treatment are still much further down the line.

    Like many others here, I look forward to clinical trials (when and if they come).

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  38. (I emailed the Heller Lab website and will post if they respond)

    One of my friends sent me a link to your website and I read this page: http://hellerlab.stanford.edu/qanda.html

    I wanted to let you know that I am profoundly deaf and have learned alot about stem cells from experts like you and others. I currently wear two Phonak Naida ultra power hearing aids and will be saving both of my ears for stem cells. You mention cochlear implants, but I don't see any mention of hearing aids. Everyone knows that hearing aids is a cheap, safe method of giving the hard of hearing and most deaf individuals access to sounds, music and speech. Modern hearing aids, such as mine offer an average gain of 70db(if properly programmed) in the low and mid frequencies. Thus, this could aid a deaf individual with a 90db loss to 20db, a 100db loss to 30db and a 110db loss to 40db. Cochlear implants are more expensive and vastly more risky(major head surgery) than stem cells(minimally invasive IV injection) and hearing aids, not to mention a dead end technology that will be obsolete once stem cells becomes mainstream knowledge and a more mature technology in the near future.



    Cochlear implant(s) often destroy the individual's remaining residual hearing so they were typically only used when the individual was 100% deaf with no residual hearing to begin with and thus could not benefit from hearing aids. Nowadays, cochlear implants are over prescribed, especially among children who often could and would benefit from properly fitted and programmed hearing aids. I know this because I was born with 90 to 100 db hearing loss and did quite well with analog hearing aids and even better when digital hearing aids came out. Thus, any individual with residual hearing(especially 100db or better) will have access to sounds, music and speech and can wait for stem cell technology to mature more then get stem cells after the pioneers in clinical trials have gone ahead.



    Stem cells has already been proven to work in the animal model from what I have learned and been proven to be safe for a myriad of conditions besides hearing loss. You also probably know that stem cell centers overseas are treating patients and dozens have gotten an average of 20db improvement in their hearing, but Chloe had her hearing improved to near normal levels. I also read of a stem cell clinical trial in Texas where they will treat 10 babies using their own cord blood stem cells to improve their hearing. I believe this clinical trial will be a success since it's already proven to be a success in animals and dozens of people in other countries. Therefore, I am not a fan of cochlear implants and advocate people stick with hearing aids till they have saved up the money and are ready to get stem cells. This information could be posted on your web page as it's important for them to know. I thank you for your time reading this and for your research in stem cells that is already viable in helping people.

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  39. Hi Deaf Dude/All @ Blog..

    Are u able to speak clearly with this level of deafness with HA support

    Can you listen and speak s f sh clearly

    My dauther of 2 years is recently detected one month back and Not sure that her Phonak Naida 1 UP is helping her to listen all speech and how well she will develop speech and will her speech be normal or deaf Voice ..

    Her audiogram looks same as deaf dude posted in the blog

    She is too small to give quick result and say she is listening or not

    Really Worrid Can anyone help to Respond based on you wonderful experince of Life

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  40. Are u able to speak clearly with this level of deafness with HA support

    Can you listen and speak s f sh clearly

    My dauther of 2 years is recently detected severe to profound deafness ( 85 db threshold) one month back and Not sure that her Phonak Naida 1 UP is helping her to listen all speech and how well she will develop speech and will her speech be normal or deaf Voice ..

    Her audiogram looks same as deaf dudes one

    She is too small to give quick result and say she is listening or not

    I am Not seeing much development in her after 1 month useing the aids in terms of hearing and speech development

    Really Worrid Can anyone help to Respond based on your wonderful experience from Life

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  41. Dear Deaf Dude

    Will appreciate you respond to my above post in similar enthusiasm and promtness you respond to aniti stem -cell post..

    I am facing issue in reality..and i thing you should be prompt responding my issue rateher that stem cell whch is not so call realistic right away

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  42. ShirshenduNandi,

    Can you scan her audiogram and post it here? If her hearing is better than mine, properly programmed hearing aids should give her significant benefit. I will be able to give more advice once I see her audiogram.

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  43. RE-

    500-90
    100-101
    2000-104
    3000-104
    4000-102

    LE

    500-91
    1000-106
    2000-4000-NR

    ReplyDelete
  44. Her hearing, at least in the right ear is good enough for some ability to understand speech provided her hearing aids are programmed for maximum amplification. I was able to understand speech, read lips and speak clearly with 90-100db loss and old analog HAs(born in 1982) How high did the audiometer go? Can she hear anything in the highs in the left ear?

    I give you permission for you to print my audiogram(do a search) from age 16 where I had 100db loss and was aided to 35db. Show your audiologist my audiogram and let her know that your daughter should be hearing at 35db or better. Your daughter needs a comprehensive unaided and aided test using 11 frequencies from 125Hz to 8KHz.

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  45. wow deafdude is right on im deadfdude2 we are in the same boat.... i could go on and on about my life as being deaf but we have the same story quite amazing.. i am 47 93% loss both ears.from birth i dont even know sighn languge i have maid it with HAs since 1971. what made me decide to post is the fact that i to went to different so called ha specialist thru my life. i only liked about 5 out of 50 well there service and knowlege 2010 i went for new aids and got nadia which the the woman in woodlands, i did not mention her name she did not know how to program them she told me well my profound hearing was to bad to hear any better even though i was hearing better with the ones i came in with from 2002 well i ended up going to another place and got different hearing aids (unitrons) that i could hear better with at the time and just recently went to another that gave me a trial for the nadia that lady did not know how to program and those were better than the ones i chose the problem is the money i just bought the untons you cannot trust just one go to as many specialist as possible and yes i am a canidate for cl but i will save my few remaining hairs untill they die.... wait and think before you give you kids a cl

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  46. Hi Lee..Can You speak clearly and Pronounce s,sh,th .and diffrentiate them in hearing speech as well

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  47. Deafdude, I'm surprised you're not all over this one. :) The FDA has started the first clinical trials using cord blood stem cells to treat acquired sensorineural hearing loss in children: http://cordblood.com/regenerative-medicine/clinical_trials_overview.asp

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  48. http://cordblood.com/regenerative-medicine/clinical_trials_overview.asp
    This old Infor already covered in this discussion Multiple times

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  49. yes, my speech is good.. i do pronounce some words wrong. i do have problems with hearing aids there not the cure all but cant cope without them..

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  50. ShirshenduNandi i have been told by my mother that the doctors were shocked. that i was able to speak clearly when they found out i was deaf they said i was unusual case hmm. i am now told that to that my speech is very good for my profound loss. and yes i can hear s sh th but also i have felt lucky to since i have joined hearing impairment groups in the past i dont have any deaf friends now i dont know sign language so i did not fit in but a lot of them according to hearing charts my hearing was about the same and worse but i could not communicate with them because there speech was too bad for me to understand and a lot could not here me so i stopped going i still want to learn to sign but never take the time.when i was growing up i did not have near the help what they give deaf kids in school now i went to normal schools it was very tough not easy..

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  51. my chart
    left------ right
    250-85--- 250-75
    500-105--- 500-95
    1000-105--- 1000-105
    1500-95--- 1500-110
    2000-95--- 2000-105
    3000-90--- 3000-95
    4000-90--- 4000-100
    6000-95--- 6000-100

    ReplyDelete
  52. ShirshenduNandi, did your daughter get another hearing test with and without hearing aids? Did you show your audiologist my older audiograms? Re-read my above reply to you.

    Lee, your audiogram is similar to what mine was when I was 16. Your ability to hear high frequencies probably helped you speak clearly. Do you have any aided audiograms that tells you how well you hear with hearing aids?

    ReplyDelete
  53. deafdude i not sure what kind of test for sure you mean but if its the one with popcorn hotdog baseball icecream LOL i have it memorized after all these years get all 10..but my first REAL test came when i went to hear about the C.I.but it was way harder then any test i ever had with h.a specialist. but it was like this, on single words i got only 3 out 50 but sentences i got like 78% right but i believe the way they would say -- o k are you ready say the word -reindeer etc.. confused me but i am deaf. i have always heard oh you did good with these new h.aids you got all 10 right wonderful how great... will it be cash check or cc

    ReplyDelete
  54. deafdude just hit me that i have never had a sound test done with ha only without that i ever remember?.. do you have to ask for that??

    ReplyDelete
  55. I dont have done Pure tone audiogram..I have done ASSR test for My Daughter ( she is asleep and tones of diffrent frequencies passed on ) also I have ABR ..Bsed on the test we have given her aids

    ReplyDelete
  56. Do you feel that ASSR results does not match Pure tone audiometry as teh child is asleep..Can the result be heaven difference

    ReplyDelete
  57. Hi L. Francis,

    Can you please let us know how you came in contact with Cryocord Malaysia? I called them on (+603-7880-2929) today from Chicago and they say that they only inject 'cord blood stem cell' for the stem cell treatment.

    I have no idea of how to have adult stem cells drawn out of my navel area to be sent to Cryocord lab for it's duplications into million of cells.

    Can you please provide the contact information of the Cryocord people and especially the doctor who gave you the treatment?

    Thank you very much.

    ~Jsca.

    ReplyDelete
  58. i also spoke to Cryocord Malaysia over phone..thay are not confident about this treatment.when i asked their Phone support desk do you have any such treatment for deafness using stemcells they told Pls send your report to us we wil reveiew and revert to you .

    If they really did something astonishing in the feild thay would have approached me as Yes we treat deafness plase send your report

    ReplyDelete
  59. Be careful of places that are incompetent. Aparantly, only China has had the best results. There is also Korea and Panama. Everyone always asks for your reports and medical history as to see if you have any other underlying conditions etc. Name is Harry

    ReplyDelete
  60. Also, deafness can mean whole variety of conditions. For example - cochlea not working due o damaged hair cells, nerve damage, cracked cochlea, undeveloped inner ear etc. Therefore, they require your results etc to see if the SC will help you. Remember SC repair damaged cells but cannot repair everything. EG - can repair damaged cells but cannot repair an amputated arm. Harry

    ReplyDelete
  61. Hi, I got a reply from Cryocord.

    This is what I asked to Cryocord:
    "I want to know that do you provide Adult stem cell treatment or no? We are NOT looking for cord blood stem cell treatment. There was a patient from Australia, who got his stem cell treatment at Cryocord for his hearing loss and arthritis in April 2011."

    THEIR ANSWER:
    "Stem cell therapy for deafness is allowed in Malaysia as part of clinical research only. Therefore, strict inclusion and exclusion criteria applies. These rules are meant to protect the rights and interest of the patient. Should your father be found suitable to participate, we will be most to enrol him. Therefore it would be most helpful if you could share further information about your father.
    Thank you very much.
    Dr SP Chin.
    Clinical advisor"

    I wander whether L. Francis did really have his adipose-derived treatment at Malaysia or no? I am really looking forward to L.Francis' help b/c some of us really want to have stem cell treatment and its better to make a preparation beforehand.

    ~Jsca.

    ReplyDelete
  62. Another reply from Cryocord:

    "I do not think I mentioned cord blood stem cell in my earlier email to you. Maybe you have confused our institution with another. We are not all "guys" here.

    Yes we do provide adipose-tissue derived ex vivo expanded mesenchymal stem cells as part of a strict clinical protocol, if that is what you mean. Stem cells is a very general term loosely applied to various types of cells with regenerative and transdifferentiation capacity. However specific diseases require different types and sources of stem cells. The route for administration, cell dosing and dosing frequency also vary from individual to individual depending upon the type, aetiology and severity of the disease. Therefore a full report from you would be helpful. Some patients are clearly ineligible for stem cells. Other patients may also unlikely to benefit significantly from stem cells at this stage of the development of the therapy. For such patients we will advise that you not to undergo the therapy.

    If you are interested, I will put you in touch with my study coordinator.

    Thank you.
    Dr SP Chin."

    ~Jsca

    ReplyDelete
  63. Harry" I understand the word deafness and know the meaning of it more than any other english word"

    I can ask a doctor " Can you treat fever"

    I can expect a answer" Yes i have treated fever before But for your case i need to verify your report to see if i can treat the fever you have"

    Instead If the doctor tells you " wait give me your report i will see and let you know if i can treat" wont you run Out

    I got similar experience on phone with crycord

    ReplyDelete
  64. Obviously, companies want your business and some are there to rip you off. But for SC treatment, every company requires your full diagnosis to see if SC will cure you. As stated, there are only 3 companies i would trust. I think this L Francis is not a genuine case as i have tried researching him.

    SC apparantly cannot cure gene defects thats why comapnies require to see you med docs. Also to see if there is any other underlying illness within you. I wouldnt trust this malaysian company. Speak to Don Margolis. He knows his stuff - Harry

    ReplyDelete
  65. L Francis i also feel is a fake case.. No clue of this person anywhere..

    SC need minimum 10 years to clear trials and middle class families can afford

    ReplyDelete
  66. "SC need minimum 10 years to clear trials and middle class families can afford"

    Agree, however different types of SC will be available by then that would probably work better - i.e. Nasal SC.

    People are charging a fortune at the moment. For me, thats taking advantage of SC treatment as they know SC Treatment cannot be performed in USA, UK and other 1st world countries. However, there are some companies cashing in on it now but do not do the treatment correctly.

    I do not have hearing problems, i am doing it for my 2 yr old daughter who has just suddenly lost her hearing even though she passed her ABR when she was one month old. Something has happened in 2011 - no colds, no illnesses, no diseases etc. Docs says she more then likely has a nerve damage as her whole ear is working and cochlea is perfectly fine. MRi scan will tell the results. - Harry

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  67. Wait a second. I wrote to the company and they confirmed the treatment. I posted their response above, but here it is again:

    "Thank you for writing in. Indeed we have done a case on hearing losses using autologous adipose derived Mesenchymal Stem Cells. It was a treatment protocol given by the patient who has done intensive research with some of his doctor friends. It was a 3 part i.v injections over a period of almost month. Although autologous stem cell treatment is safe, there is insufficient evidence that it could treat hearing losses. Despite this, it was noted by the patient to have increased hearing ability and this would improve over time. The cost is US25k including a little fat harvest by a plastic surgeon. I hope this information is of help to you. Thank you."

    Please note that they themselves feel there is insufficient evidence that SCs are an effective treatment of hearing loss.

    ReplyDelete
  68. Same here harry I am also trying for my daughter she is also 2 yrs old. But we detected at 2 years of agre and she is on hearing Aid for 1 and half months Now..

    My wife had got rubella in 4th Month of pregnancy But our Fu@@@ Indian Doctors never Tols us the consequenses as per them the child will be fine and at birth we saw a normal baby crying and stuff an there is no Strict ABR rules at Birth

    So we spent quire relaxing time all these years befor the sky broke on us when we took her for tratmenst whcy she was unbale to speak

    SEVERE TO PROFOUND BILATTERALLY

    I am still in Huge depression an dtrying to come out of the same

    What about Your daughter deafness level : nandi

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  69. Hey Nandi, my daughters level at moment i think is the same as your daughters. However, my wife had no illnesses what so ever. So everything was normal up and till we realised she was not speaking as much. Where you from Nandi if you dont mind me asking.

    Does you daughter have sensoneural hearing loss?? or is it Auditory Neuropathy (ANSD)?

    Are you considering SC??

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  70. This is a message for Deaf-Dude.

    I enjoy reading your blogs and your views, and in some way agree with them. But you say there has been dozens cured with upto 30 dbh improvement. Are all these done at one place???

    Is it RNL BIO or Beike Biotech?? Which one do you recommend?? Both companies have good portfolios. Don Margolis says only china has the best results and dont trust anyone else. Then i hear there is Panama - Cell medicine. Whats your knowledge on these??

    Which one do you recommend?? and Why?? Yes i know about Chloe's case - but she ha Autoimmune HL and NOT SHL and NOT ANSD. So her symptons differ. Everyone i seak to recommends Beike Biotech in China, and i have read all there hearing loss articles - people having 10dbh improvement and so on.

    So tell me what you think with facts please - Harry

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  71. Hey harry.I am from India (Kolkata/Calcutta)..But I stay in kualaulumpur Malaysia For Work Related

    But If stem cell give 10 Db improvement and have to speant 25 K USD then no point going for it at this point well the day its 30-40 DB wi will make sense

    Nandi

    Nandi

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  72. Hello everyone:

    1. For those of you who have young deaf sons and daughters, please make sure their hearing aids are programmed for maximum amplification. This can be verified by an aided behavioral audiogram. Keep in mind that modern HAs offer an average of 70db gain.

    2. I know that today's stem cell technology is still immature, but some people are deciding to go ahead anyway, such as Francis who achieved 20db improvement and I believe his results. I will hold out for a 40db improvement since my hearing is so much worse to begin with.

    3. RNL BIO or Beike Biotech are both good choices, I would give the nod to RNL since they treated Chloe with amazing results. I have already proven that stem cells can treat any SNHL, not just autoimmune. Look at Francis success!

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  73. Proven is baloney, DeafDude, but good luck to you and all the others with the treatment.

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  74. Im very unsure which company would get the go ahead. RNL Bio have had some bad publicity in late 2010 as 2 patients died after having stem cell treatment for anti-ageing. But they have great results for hearing loss - Chloe, and other diseases. But when i email them (several times), no one ever gets back to me. Deaf-Dude, can you tell me why they dont get back to me??? Do you have any contact details for them.

    I do like Beike Biotech, they have so much pedigree and great results. I have a article of a american girl getting 10DBH improvement. And other articles.

    I would like to speak to RNL Bio but they never respond. Deaf-Dude get me in contact with them.

    Next point - There is no L Francis. I researched everywhere. Give me facts on this please.

    Nandi - i agree with you. Spending a lot of money to get 10DBH improvement could be not worth pursuing until you know you can get 40 DBH improvement. But sometimes it all depends on the individual and symptoms. Chloe received full improvement - but her diagnosis was autoimmune disease. I pressume if you have SNHL then you could get anything upto 40 DBH improvement - its only my presumption - facts are people have got 10-30 DBH Improvement. Nandi i may persue stem cells in near future. I have been speaking to Don Margolis and David Granovsky. David says he has around 200 people waiting to have SC treatment and on his list.

    He wrote to me yesterday - " Be warned, while I have approximately 200 patients on file looking for stem cell treatment for hearing loss, I have yet to find a treatment center with the required number of patients treated and percentage of patients helped for me to feel comfortable recommending them to you. That said, I am constantly reviewing new treatment centers and protocols and results are always changing and improving so I am confident your time will come soon"

    Nandi, email me if you want.

    Harry

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  75. Hey Harry

    Thats great news Seems you are doing more practical research on Stem cell than deaf dude .

    Its good not to beleive in hoax news until an unless anyone sees and listen some proofs .

    Internet had become unfair means of speading hoax news and divert People by confusing them

    So My request to all is beleive in black and white proof Not just beleive in Hoax and spead them confusing others

    Lets Pledge ,We live in a great world with promising Future and we will make a difference in the life of our chilren who have their whole life waiting ahead

    Nandi

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  76. Guys anyone Have any Update On :Latest Stem Cell developments for hearing loss..Seems the Noise and hype created suurounding stem cell seems quite .

    Will it be true some day? waiting eagerly as i prefer SC over CI..

    But last few month development news flow about SC ( specifically related to Hearing loss) is not much

    If anyone any latest info pls post it...

    Sceintist you have helped in hearing to Mice a lot now it turn for humans

    Chan BC

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  77. L. Francis is the real deal - he did post his whole experience in this blog. He's just an individual who took his chance on stem cells inspired by Chloe's success - you won't find his story elsewhere because he has decided to remain anynomous.

    Regarding D.Margolis - i don't like the guy.
    he's business tied to the chinese clinics so he'll try to push you in that direction and get his fair bit of $$$ because of that.

    ReplyDelete
  78. Hi Anonymous of the above post

    L francis cannot afford to be anonymous if you really got benifitted from sten cell

    This is the most cowardish act


    You have to come forward and say to the world .Look i have got benifitted

    You cannot stay silent, instead you need to help several others who are willing to go for stem cell but unable to make a decision because of lack of confidence and proofs


    If you are really benifited from this treatment you should thanks god and come forward to help mankind of your old community

    Nandi

    ReplyDelete
  79. "Regarding D.Margolis - i don't like the guy.
    he's business tied to the chinese clinics so he'll try to push you in that direction and get his fair bit of $$$ because of that"

    Now this is questionable - any proof that he is tied with Beike Biotech??? Because that is who he recommends. So why does he state that Chloe was cured by RNL Bio (a different company) in his website?? Why would he mention this if he is tied to Beike??? Don and the state (ex) governor tried to make stem cell treatment more public and have the fda approve of it. So please state facts before making allegations. Proof please.

    Just because someone posts his Blogs on here, doesnt mean they had stem cell treatment. Why would you post here!! Its nothing special compared to international media, local media, papers etc. To me its a farce. No record at RNL Bio either.

    I speak to many people at the moment and many companies do Adult stem cells. The fact is, many companies do it but, a lot do not carry out the correct proceedures. China, Korea, Japan are way ahead of Europe, USA etc. Fact is, Asia are more intelligent and are children are 2 years ahead of any other child in the world. Fact is, Korean people have less diseases in themselves.

    FDA in europe and USA are corrupt. Their shareholders have shares in pharmaceutical companies and 1 reason they would go bankrupt if stem cell was made available worldwide. Many other reasons aswell. POLITICS and MONEY. Im not saying stem cell is perfect as now, its becoming better year on. The statement is "stem is not a cure, it provides you a better way of life". So if you receive extra 20 DB hearing, its not cured but you havea better way of life. I may consider for my daughter early 2012. £12,000 i have been quoted. Harry

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  80. "Fact is, Korean people have less diseaeses in themselves." DeafDude, could you remove this drivel from your blog in the interests of maintaining the quality? Thanks and 안녕히가세요, Harry!

    ReplyDelete
  81. Anonymous, no need for that. What I meant to say was Korean people have been known to be the healthiest people in the world. This has been reported in many articles and papers. Because of treatments available and technology. I'm not here to slag or offend anyone. Btw, in not Chinese or Korean, I just appreciate what they are doing. Anonymous, if u want slander anyone, go on a chat room - Harry

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  82. All the best Harry Keep me posted on the results of your daughter

    I dont have so much fund as of now But if it worth for you then would take loan to cover Up the cost

    I do not mean that i am pushing your littile sweetheart for this, But if you had really made up your mind for her treatment you can show us correct way

    Regards
    Nandi

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  83. Hi Nandi,

    Stem is my option if no one in UK can do anything. We are due to see the ENT Professor next week. Her MRI scan came out clear, the brain, the cochlea, the nerve came out clear - this has lead to us so confused. ABR Shows an inner ear problem, but clear cochlea micrphonics. Did anyone have these symptoms and results?? What could her diagnosis be??

    Harry

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  84. Great blog! Very informative! I even learned some new info! Let's speak directly - dsgrano@gmail.com Please check out my posts on stem cell treatment for hearing loss:

    A SCIENTIFIC HISTORY OF STEM CELL TREATMENT FOR HEARING LOSS
    http://repairstemcell.wordpress.com/hearing-disorders/

    ReplyDelete
  85. David - who would you say is a competant stem treatment company?? Whats your knowledge on it.

    ReplyDelete
  86. With Geron abandoning embryonic stem cells and the US finally waking up to the benefits of adult stem cells there has never been a better time to learn about the opportunities for recovery from adult stem cell treatments. I have a new stem cell treatment protocol for hearing disorders coming together soon. The cost is around $18,500 and requires int'l travel. No insurance coverage but I am also working on medical financing. I am waiting on final information regarding numbers of patients treated, specific protocol criteria and success rates. I will keep you guys abreast of future developments. If you want me to send you information directly you can provide me with your injury specifics and contact information - bit.ly/PATIENTQUESTIONNAIRE For a history of stem cell treatments for hearing disorders - http://repairstemcell.wordpress.com/hearing-disorders/

    ReplyDelete
  87. repairstemcell - David, this sounds like Beike Biotech. Can you confirm this?? To be honest, it could only be Beike or RNL BIO (Bethesda Clinic). Beike Charge $18500 whereas RNL charge $20000. Beike has way more treatment records, but both have had positive results.
    David, how soon will it be before you have some development??

    Next thing is, Beike reps obtain a 2% commission for recommending someone for treatment. So if you go with Beike, strike a deal with the rep, go 50-50 with the commission.

    Vistastemcell claim to cure many diseases using EMBRYONIC stem cell. Now, what im lead to believe, this is not fully tried and tested and believed to potentially cause tumors later on in life, or gene mutation. But their reps sound so convincing, as they are so intrigued with your symptoms, and what to know your case fully by asking for the actual MRI Scan so they can look. But embryonic SC scares me.
    Harry

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  88. "I have a new stem cell treatment protocol for hearing disorders coming together soon. The cost is around $18,500 and requires int'l travel. "

    David""HOW SOON"? Should not be late so that our children get habituated of deafness world

    Had this treatment any CLINICAL TRIAL Records and approved by FDA

    Regards
    Nandi

    ReplyDelete
  89. http://rnlbiofraud.weebly.com/ says it all really. Don't waste your money on them.

    ReplyDelete
  90. That anti-RNL site looks like something that would be created by an anti-stem cell loon!!

    ReplyDelete
  91. The site was created by someone who paid 25 grand for the treatment and was not helped by it. In other words, he threw that money out the window.

    Given the lack of verifiable information about stem cell treatment and the extremely high cost, it's surprising to me that anyone who dares to point out the possibility of a scam is called a "loon." I'm beginning to wonder whether this blog is infested by representatives of RNL and other questionable companies to stop honest debate.

    For all the others considering treatment, please note that DeafDude has not yet had stem cell treatment and is not going through with it in the foreseeable future.

    At least he understands that more tests need to be run before he drops his (or his parent's) hard earned cash.

    ReplyDelete
  92. I contacted the guy who created the http://rnlbiofraud.weebly.com/ website. Seems genuine to me. He clearly has nothing to gain from it other than warning people not to make the same mistake that he did.

    ReplyDelete
  93. I think it is smart for all of us to wait. Take a look at this research that has been successful to the point the company is searching for potential investors (Big Pharma probably) to develop their research into treatments. The bottom line all this question as to whether or not it can be done is answered. The good news is it can be done. We all are basically at the mercy of financial backing. Once Big Pharma gets involved this dilemma that we face will all come to a joyous end hopefully. Take a look at this link.

    http://www.marketwatch.com/story/vitro-develops-novel-stem-cell-technology-for-use-in-treatment-of-hearing-loss-2011-10-04

    ReplyDelete
  94. Ah Hello?? The company in your link (Vitro Diagnostics) last reported annual revenue of 1,759 dollars and a loss of 58 thousand dollars. Its stock is trading at 8 cents over the counter. Do I have to explain to you that the release you quoted is only meant to pump up its stock price and the company operates out of someone's condo? Please get a life!

    ReplyDelete
  95. Oh, sorry, that revenue was over a three-month period. But do the math: the annual loss will be bigger too!

    ReplyDelete
  96. Dear Ah Hello:

    Your negative pessimistic attitude is not appreciated so go join the other individuals out there that don't want to see this research flourish.

    By the way, who's side are you actually on? If you are inflicted with the situation that all of us live in, maybe it would benefit you to help join the cause that will help us all.

    Until then, rant and rave somewhere else. Your attitude stinks and your response is purely immature. I would have to say I have a life, maybe your so angry because you do not.

    Now, who needs to get a life? Think about your comments and your outbursts before you make a more fool of yourself in the future.

    ReplyDelete
  97. I do want to see this research flourish. Very badly, in fact. It's funny that you should assume otherwise just because I pointed out that the information you posted was worthless. Do you disagree with my assessment? Why don't you address that issue instead of distracting from it with your mistaken assumptions about my motives.

    If you follow DeafDude's blog for any length of time, you'll see that there are a lot of people who, quite understandably, want stem cells to work and are considering paying thousands for dollars for treatments that have not been tested and proven to be effective. These people need to be warned about the possibility of scams. They are not helped by publishing links to companies whose work is negligible and suggesting this is an advancement in science.

    ReplyDelete
  98. You are not even worth talking or listening to anymore. My whole intention is to provide postitive information my friend. You are the one who is spinning this negatively.

    Do you know this company personally or have you worked with them to know the facts you are stating?!?!

    I don't know who you are, but your tone is completely negative and you my friend again have started this conversation.

    If indeed you have so many facts about this company than do tell all of us. But I believe you have nothing but assumptions and yes all of us know what that makes you if all you have is assumptions.

    I am purely posting what was made public and what was posted on many bio websites for information to be discussed, reviewed and seen. Get off your high horse pal!

    Unless you of course have the credentials to back up what your are talking about, which I highly doubt you do considering your ASSumptions about this company.

    ReplyDelete
  99. Interesting. I just posted the information I had gathered on the company from the Internet and explained why it was mistaken to believe they should be taken seriously, but my post was removed. I will gladly repost, if anyone's interested.

    Beware people. There are a lot of unscrupulous people out there who know that deaf and hard-of-hearing people will pay almost any amount for a cure. Get proof that treatments work before you get scammed.

    My own opinion, after doing quite extensive research on the subject, is that we won't be seeing effective and verifiable treatments for another fifteen years. I'm sorry if this seems too negative for the sensitive souls like the person posting before me, but it is what I truly believe.

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  100. If you would have read the article it was not advertising treatments. They are stating they have the compounds necessary to provide potential treatments. They are not a treatment center. Maybe you should focus on reading as much as you have been focusing on trying to state how fraudulent the company is. I could pull many articles from Stem Cells to Gene Therapy stating the same thing they are. In case you haven't figured it out, this whole dilemma is being held up because of funding. Do more research and start supporting some of these scientists and maybe if you are as interested in seeing things flourish as you say that maybe you wouldn't be downgrading any research being conducted to help us. If your also concerned why your postings have been removed, like suggested before you might want to evaluate your tone and opinionated statements that do not even relate to the discussion at hand.

    ReplyDelete
  101. I suppose the individual against Vitro Diagnostics will probably shoot this one down as well.

    Can't wait to see what is said about this one because there is no advertising of anything here other than the fact they proved it works on guinea pigs.

    All in all this again is great progress and is the first article I have seen in a long time that did not put the ever so famous tag line at the end, "There is much needed research and study needed before human trials can begin", Or of course the other ever so famous this treatment may be available 10 years from now.

    I truly think the science whether Stem Cell or Gene Therapy is closer than we think. Keep the faith everyone.

    Here is the site with the article that was published on the 29th of November.

    http://www.zmescience.com/medicine/genetic/deafness-cured-by-gene-therapy/

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  102. DeafDude-you have to have faith that if you have the better arguments, people will listen to you. To censor other people's arguments merely shows weakness and cowardice.

    ReplyDelete
  103. The problem is that you (the person who posted about Vitro and its “groundbreaking research”) are ignorant about the way capital markets work in the United States. Let me explain a few things for you:

    1. Vitro Diagnostics trades on the the OTC (Over the Counter) market, which is loosely regulated and not subject to the strict requirements of NYSE or Nasdaq. Companies trading OTC regularly come up with all sorts of claims to pump up their stock, which is in the owner’s interests since they usually own large amounts. Vitro’s latest release was a typical empty press release for an OTC stock, giving no specifics about its techniques, never mind test results (“Vitro Diagnostics … announced development of technical advancements with application to treatment of hearing loss in animals and humans). Its only purpose is to get gullible people like yourself excited about the company’s prospects.

    To be continued...

    ReplyDelete
  104. 2. Vitro’s stock is currently trading at 8 cents a share. When a stock trades for pennies, it means that investors have no confidence that the company is ever going to make any money. This company will probably go bankrupt. When you see a stock trading at 8 cents, there is really no need to look into its products, technologies or services: the stock price tells the whole story.

    ReplyDelete
  105. 3. Even stocks that trade OTC have to file financial reports. If you go to Vitro’s website you can find all this information and confirm the figures I provided in an earlier post. Just click on “Form 10Q Third Quarter” for the most recent financial results on this page:

    http://www.vitrodiag.com/investorrelations/investorrelations.html
    According to this form, Vitro made about 1,100 dollars from sales (not profit, mind you) in the last three months. Just think about that—an entire company taking in monthly revenue of not just over 300 dollars! To suggest, as you did, that this company is going to attract the interests of “Big Pharma” is sort of like claiming your son’s lemonade stand is going to be bought up by Coca Cola.

    ReplyDelete
  106. Re: "I suppose the individual against Vitro Diagnostics will probably shoot this one down as well" (concerning the article at www.zmescience.com)

    Hi, me again, and I will gladly correct you on this one, too.

    The article you cite is just a rehash of a study that was done on guinea pigs back in 2005 and published in Nature Medicine. This is stated in the article but obviously you didn't both to check the primary source or the publication. Since you have scanty knowledge about the state of stem cell research for deafness, you once again jumped to the conclusion that this was groundbreaking research and a cure was just around the corner. Please inform yourself before you post misleading information like this and the Vitro release again.

    ReplyDelete
  107. Has anyone heard of Vista Stem Cell???
    Thet also claim good results - anyone care to give feedback on them

    ReplyDelete
  108. Guys

    None of you are Big Scientist, Nor BIG Investor relation manager,nor Financial Boon to discuss companies Progress and performance

    Simple equation

    When you feel stem cell is good go for it

    If you feed cochlear is good ,go for it

    If you feel H-aid is good ,go for it

    Dont waste your time making unnncesary and timepass statements

    Give this valuable time to go something constructive

    All the Best

    ReplyDelete
  109. The TRUTH is that stem cells to are being used cure hearing loss! Search on the web for a girl named Chloe Sohl who was successfully treated using stem cells!!!!!

    ReplyDelete
  110. To the above poster, I strongly suggest you visit www.rnlbiofraud.weebly.com - its about the company that supposedly treated Chloe Sohl.

    ReplyDelete
  111. is this possible really?
    how come this girl got some of her hearing restored years ago yet it hasn't been posted all over the news, surely this is a break though and every charity for deaf/HOH would sink millions into this?

    ReplyDelete
  112. A lot of this is a con. Some have had positive reactions, but a lot have had very very minimal reactions. This blog does not give you full information. You need to go into other blogs/posts such as stemcell pioneers. There you can see who has had bad/good treatment, and they tell you of research in place.

    This blog is dying, and no one here has had stem cell treatment, only people saying they are going to do it.

    ReplyDelete
  113. Hello everyone. If you haven't been following what a gene therapy based company called Genvec and their partnership with a Big Pharma company have been working on, take a look.

    This was just posted today as they have reached a critical milestone in their goal. There is not much in detail but if you google either one of these companies you will see their collaboration that started about a year ago. And it isn't just to hype the market, Novartis is one of the largest Pharma companies in the world and they are both working feverishly toward treating hearing loss.

    http://www.theflyonthewall.com/permalinks/entry.php/NVSid1540191/NVS-GenVec-achieves-second-milestone-in-collaboration-with-Novartis-

    ReplyDelete
  114. umm, interesting. However, there is no real proven article on this, just word on the streets. However, it doesnt mean its not true. I hope it is, however, facts like this should be branded in the media to give people hope.

    ReplyDelete
  115. Look up Genevec and the Novartis collaboration. It isn't just word on the streets.

    They have had an agreement with each other since January of 2010 working on hearing loss and balance issues.

    ReplyDelete
  116. Genevec and the Novartis collaboration..Incomplete Information

    Pls clarify

    What kind of hearing Loss they can treat/will treat

    Acquired/Age realted /Sensoneural/Genetic/All Kind???

    Is it drug/Medicine treated? or Impant/therapy?

    Shat it work On chilren?

    Regards
    Nandi

    ReplyDelete
  117. Nandi, have you heard of a Doctor Called Hinmanshu Bansal. He is based in Rudrapur India. He has had grat success in stem cell treatment, especially treating a USA patient from blindness. His clinic is Non-profit and based on research only. There are many media articles on him. Do a google search on him.

    I have spoken to him, and his partners, and they seem very nice. All they want is tests results to se if their stem cells can treat you. Also, on a positive note, an american patient went ot China and the stem cell treat failed to improve his symptoms. Then her went to India, and now his symptoms have improved rapidly.

    The advantage on him, he is non-profit and research only. Hope it helps - Harry

    ReplyDelete
  118. Thanks Harry for your time and sharing Info.But Little information on treating hearing Loss about the Doc...I dont waana my Kid to be guneipig of stem cell
    By the way have you given your daughter HA and speech therapy started ?

    what is her progress is she babling Now..

    Regards
    Nandi

    ReplyDelete
  119. My daughter only lost her hearing we think in last 4 months. She had been babbling before and has a few words. Yes they have put HA on her to help progress in her speech. She is seeing a speech therapist. She sometimes dont want to wear her HA but she responds when she has them on. If her symptoms are getting worse to the point here HA are no good, then i will try Stem cell treatment.

    I think a natural cure will be available within 10 years as there is so much research in place and clinical trials.

    Harry

    ReplyDelete
  120. if she Responds with with HA i feel you have no point to PANIC.

    Have faith in HA technology give her 6-8 month withg HA to see the real diffrence

    Give here speech inputs from your side .all things you see nearby , all work you do..even the stupidest act to ,\be expressed to her with words..NO GESTURES PLEASE

    She is filling her brain with words now its time for you to give the memory card the maximum input .Dont bother she is responding or not do your part.she will definately pay back and that will be your happiest moment

    Regards
    Nandi

    ReplyDelete
  121. Nandi, Does your daughter have hearing aids?? Is she severe/moderate/profound/mild hearing loss?? How old is she??

    Do you have any info on her progression??

    Harry

    ReplyDelete
  122. My daughter have Phonak 1 UP Hearing aid Bilatterally

    She is severe to Profound deaf in Both ears

    She is using HA since last 2 and half months

    She is 2 years 3 months age.

    what about your daughter hearing Loss levels

    Regards
    nandi

    ReplyDelete
  123. My daughter, has HL in different frequencies vary from 65-90 DBHL billaterally. She is 2years and 4 months old. She had her HA for 3 weeks now. Just worried it may progress as she was not born like it. She has had her symptoms just before she was 2 years old - could be gene mutation, ENT doc doesnt know.

    Harry

    ReplyDelete
  124. Please dont RUN after reason why it happened..I had been chasing this for last 3 months nothing helped except restlessness and short temper ..I lost mind completely..Your daughter hearing levels are OK and trust my words she wil definately speak clearly as her levels are very promising with HA support..Give her the best HA...Keep stem cells for future may be 10-12 yrs down the road

    Regards
    Nandi

    ReplyDelete
  125. Hi Nandi, is your daughter speaking now? How is her vocals. Stem cell treatment is closer then you think. So many research right now. I think within 5 years as what I've read is promising. But I may put my daughter through a clinical trial at a reputable clinic.

    ReplyDelete
  126. "Primary Culture and Plasmid Electroporation of the Murine Organ of Corti".
    http://www.jove.com/video/1685/primary-culture-and-plasmid-electroporation-of-the-murine-organ-of-corti-

    ReplyDelete
  127. Dont understand this video. video was done in 2010 - anyone else undestand it??

    ReplyDelete
  128. The Norwegian University of Science and Technology (NTNU) (2011, December 19). Gene therapy for ears. ScienceDaily. Retrieved December 20, 2011, from http://www.sciencedaily.com­ /releases/2011/12/111219135021.htm

    ReplyDelete
  129. """The Norwegian University of Science and Technology (NTNU) (2011, December 19). Gene therapy for ears. ScienceDaily. Retrieved December 20, 2011, from """"


    Miles to Go Before I sleep...Long Journey

    Decendants of out chilren may see the reasearch Complete

    Regards
    Nandi

    ReplyDelete
  130. Nandi, how is your daughter doing??

    Is her speech developing???

    Can she hear now with her HA???

    Can you see her responding??

    Does she have all the sounds??

    Thanks

    Harry

    ReplyDelete
  131. Yes Harry She is developing Babbles...Progress is on But its very patience work..My wife is taking care of her in INDIA..But i am satisfied whatever is achived ..Its was 0 Now you can say its 10/100..She is understanding speech But not able to speak now..But we are Optimistic..To early to predisct But YES developments are there

    ReplyDelete
  132. Yes most important she is responding to sound , when we calll her name she turns around and respond whch i never seen last 2 years

    ReplyDelete
  133. My daughter in the same boat. Speech is rather slow but all experts keep mentioning Cochlear Implant. At the moment, we dont want it, but before i agree to it, i will try stem cells, HA and everything else before i reluctantly accept CI for her.

    ReplyDelete
  134. I dont want CI for my daughter i dont waana keep a embedded time bomb in her thru out her Life

    Reason been

    1> Electronic Equipmenst
    2> cannot afford more that once
    3> Life of equipmenst will be a question( she wil lead a live of 60 + years will the equipmenst last so long)
    4> Operation/Surgery
    5> Residual Hearing loss
    6> Many Restrictions
    7> Many toddlers not found to be successfull enough on CI developments

    ReplyDelete
  135. CI is the best HA you can afford.I have accepted the fact I cannot afford the best HA (CI) for my daughter

    As in playing for giving her the best i fear of bringing worst to her

    Things are already worst not dont wanna take it furthur

    CI is a Trade Now ..all will recomment as the commision of one CI is equal to that of 100 HA .

    Dont enter this black market easily as they wil hammer your sentiments and get their commision ..if you daughter is profoundly deaf 105+ DB across all frequescies then CI is the only and bset option

    But i feel Harry ,Its not your case so wait before paying hefty commission to the CI Loons

    ReplyDelete
  136. This Blog Belongs to Deafdude But Deafdude has Lost His Voice ..He is so silent Now a days..

    Deafdude """ Where are you Lost"""" Whre are your stem cell Theories????

    ReplyDelete
  137. In UK cochlar implant is free on the national health service. So we don pay anything. I agree with you totally on every aspect but if you know your child in not learning to speak, cannot get her words out, will need to go to special needs schools, not accepted by normal children, learning difficulties/development then i have no option but CI. My daughter ranges from 55-90 DBHL. If the HA work, then i will keep them on. Realistically, an approved FDA treatment will be within 10-20 years. Gene therapy, the same.

    I dont want my child to have a antenna on her head. This technology will be discontinued after 30 years. And yes, who will service it in 40 years time?? And yes, i do not like the idea that her residual hearing might be lost. When i say might, the CI place said the technology has improved in the last few years and they cannot guarantee that the residual hearing will be lost or not, depends on the surgery.

    I hope my daughters symptoms do not worsen, and if i can get away with her having hearing aids for 10 years, then you never know, there might be a cure around then.

    ReplyDelete
  138. Deaf dude does not have any update, his blog is kept alive by people like you and me nandi - beike has another stem cell treatment fore hearing loss. 4 year old boy. He had increase level of hearing but not much. I just hope Wahe Guru looks out for my daughter

    ReplyDelete
  139. Yes Harry

    http://beikeinfocenter.com/wp-content/uploads/Case-Study-Hearing-Loss-American-Male-4.pdf

    AND FB

    http://www.facebook.com/beikebiotech?sk=taggednotes

    ReplyDelete
  140. This comment has been removed by the author.

    ReplyDelete
  141. Nandi, email me on sunrisetraveluk@yahoo.co.uk i would like to ask you a few things - i.e. why your post been removed and other things.

    Harry

    ReplyDelete
  142. Merry Chrismas to all Bloggers Jesus showers love , music and harmony of speech and hearing to all of you and your little ones including mine

    Recently i wrote a messeage to GOD actualy i wrote if on behalf of my daughter of 2 years

    Thank You God , For all The beautiful Gifts you have Given Me in this little life "

    A Very Special Thanks for the recent one.. .."DEAFNESS"

    ReplyDelete
  143. Hey my name is Niall and I wear cochlear implants but definitely am waiting for stem cell. I was wondering if you could get me information for stem cell clinics becuase in the us the stem cell research is very slow compared to the European and Asian countries. Email me at thenextcr7@yahoo.com please thank you.

    ReplyDelete
  144. This comment has been removed by the author.

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  145. Niall

    You can refer to websites of RNL Bio ( Korea) and Baike China as these are two renowned as on Date

    ReplyDelete
  146. www.rnlbiofraud.weebly.com

    ReplyDelete
  147. www.anonymousofabovepost.is.fraud.com

    ReplyDelete
  148. Hi Nandi, why would you say that??? Are you saying RNL Bio is a fraud or the person who writets that RNL Bio is a fraud

    Harry

    ReplyDelete
  149. I did not delete any posts, but found a few in my spam folder. Let me repost them:

    The problem is that you (the person who posted about Vitro and its “groundbreaking research”) are ignorant about the way capital markets work in the United States. Let me explain a few things for you: 1. Vitro Diagnostics trades on the the OTC (Over the Counter) market, which is loosely regulated and not subject to the strict requirements of NYSE or Nasdaq. Companies trading OTC regularly come up with all sorts of claims to pump up their stock, which is in the owner’s interests since they usually own large amounts. Vitro’s latest release was a typical empty press release for an OTC stock, giving no specifics about its techniques, never mind test results (“Vitro Diagnostics … announced development of technical advancements with application to treatment of hearing loss in animals and humans). Its only purpose is to get gullible people like yourself excited about the company’s prospects. 2. Vitro’s stock is currently trading at 8 cents a share. When a stock trades for pennies, it means that investors have no confidence that the company is ever going to make any money. This company will probably go bankrupt. When you see a stock trading at 8 cents, there is really no need to look into its products, technologies or services: the stock price tells the whole story. 3. Even stocks that trade OTC have to file financial reports. If you go to Vitro’s website you can find all this information and confirm the figures I provided in an earlier post. Just click on “Form 10Q Third Quarter” for the most recent financial results on this page: http://www.vitrodiag.com/investorrelations/investorrelations.html According to this form, Vitro made about 1,100 dollars from sales (not profit, mind you) in the last three months. Just think about that—an entire company taking in monthly revenue of not just over 300 dollars! To suggest, as you did, that this company is going to attract the interests of “Big Pharma” is sort of like claiming your son’s lemonade stand is going to be bought up by Coca Cola. As I said, I would love to see research be successful. I would get the treatment in a minute. But I don’t see the point of engaging in a group delusion that this is going to be happening in the near future. I understand that you are a “think-positive” person who is apparently not used to critical debate, but instead of complaining and getting flummoxed about someone who dares to have opinions contrary to yours, why don’t you track down some independent evidence that Vitro’s “technical advancements” are effective and promising. How about some test studies or results? I think that you’ll see quite quickly that it’s all hot air.

    ReplyDelete
  150. And another one:

    Hey Deaf Dude, as stated, my daughter has some hearing loss. I have read your blogs and agree with your views totally. Stem cells are the future and Hope the world accepts them and would be approved by FDA. My 2 year old daughter was not born with hearing loss. She had an ABR test when one month old as she failed the screening when she was born (many children fail this). She passed the ABR test. So she was ok. Its only when she turned 2 years old, we realised she didnt have many words. So she was taken to a speech therapist - cut story short - she was given a hearing test which she failed - R=85 DBHL, L >95 DBHL. But her ear was working fine, and cochlea was fine. They pressume its the Auditory Nerve. She just had her MRi Scan yesterday - so waiting for results. She also had tests done by the audiologist, and they said her ABR tests are wrong as she reacted to a lot of sounds but failed to meet normal limits. Her results came out as around 75DBHL. But how did this happen?? She was not born this way - she aquired it. She had no illnesses, looked after well, in a great rootine. My question is, has stem cells treated Auditory Nerve problems??? Can my child be treated using Stem Cells?? I have researched many companies who do SC, and found 3 of them to stand out - RNL BIO, BEIKE BIOTECH and Stem Cell Institute Panama. Also this person who knows his stuff Don Margolis Founder & Chairman, RSCI, Dallas. Im from UK and dont know who to trust. Any help from you Deafdude?? Any advice for my daughter?? Or anyone else, any advice??

    ReplyDelete
  151. Sorry guys, I have been busy lately. Most of your questions have already been answered repeatedly. I will mention again the three steps to take.

    1. Get the most powerful hearing aids you can afford and find a competent audiologist to set them for maximum gain. I have spoke to many audiologists and they all agree that most audiologists don't know how to properly program HAs. A 90db loss can be aided to 20db with 70db gain! Get an aided soundfield test!

    2. As usual, I am not a fan of CI and for good reasons that I mention repeatedly. Due to the corrupt FDA and big pharma, look for stem cells overseas. This technology will keep improving and I would not be surprised to see huge improvements in the next several months from now. Forget waiting 20, 30, 40 years, it's here now and getting better!

    3. I am sure I will have alot more news for 2012. I have been researching plenty of articles on hearing loss, the mechanisms of hair cells, the cochlea and hearing and their functions. I already posted an article a while ago stating that a CI is equal to a hearing loss of 80db with HAs and my research keeps backing this up. Once stem cells really begins to ramp up(much sooner than you can imagine!), there will be much regret by those who got CI recently. But even those will get the chance with cochlear transplants. Thanks again for your comments and remember most of your questions have their answers in my posts and comments.

    ReplyDelete
  152. Harry My commect is clear enough to be unnserstood

    www.anonymous of above post.is.fraud.com

    I never say RNL Bio Is fraud

    ReplyDelete
  153. Understood, the chap who put this website claims hes had no positive treatment from RNL Bio. Im in 2 minds here. Why would he go through this hassle to put this up, also why is there no recent patient treatment on their website??

    On the other hand, RNL Bio is well reconised by the ICMS - which claims they have some very good researchers/scientists and gods results.

    So, if i was to take my daughter to have stem cell treatment - i would be unsure to take her to RNL Bio. I wanna be 100% confiden as i dont have much money - im not wealthy and takes me decades to save $30,000. More then likely would be Beike or Dr Bansal

    Deaf dude - thanks for posting my post which is 3 months old - better late then never. However a lot of my questions have been answered by the research i have done. One the other hand - do you know things that we dont?? I.e. several months on technology - stem cell results.
    Can you let me know what research you are doing and your source as you are giving all of us hope - and i hate it when my hopes are dashed. My daughters symptoms are worsening to the point where we are getting told CI. And i dont want it - but her speech is not progressing. So i feel i need to make a decision in 2012 and cannot wait any longer as she will need to enrol in school. So inform me of research dude.

    Harry

    ReplyDelete
  154. Harry, I don't have any new stem cell news, but the research I did was related to other areas of human hearing and it's mechanisms. One article I haven't finished is about the correlation between hearing loss and speech discrimination.

    You have to remember that CI is being pushed on everyone with a moderate hearing loss or worse, even if they would otherwise benefit significantly from properly fitted and programmed HAs. 25% of those who get CI did not need one and another 50% hardly needed CI. My research shows that CI rarely makes sense for any hearing loss less than 100db.

    What brand of HAs is she wearing, how much gain was programmed into them and can you post her audiograms? Has she ever been tested for an aided audiogram? If her hearing loss is only 55-90db, she really should be hearing as well as a CI. I was born with worse hearing than that and was able to understand 50% speech, lipread and speak clearly and that was back in the 1980s.

    ReplyDelete
  155. Deafdude

    I think my daughter has Opticon Spirit Zest P. Thats what it says on the HA. Shes only 2 years and 4 months, and still going through tests as shes had a sudden hearing loss. She was perfect in may/june but only realised hearing loss in september through ABR as her speech never progressed. She was tested by her audiologist in November and her results were -
    250 - L85, R85
    500 - L90, R?
    1000 - L85, R75
    2000 - L80, R75
    4000 - L70, R70
    High frequency - L55-60, R60
    Xylophone - L70, R70
    Bells - L70, R70

    However, she is going for a full test at the Cochlear programme centre where the tests are more accurate and they can diagnose her, as yet, the ENT Prof does not know where her hearing loss is as she has cochlear microphonics and her MRI scan is clear. The centre is the best in our area so her tests will be done correctly and accurately. She will have a full audiogram. She was never tested while she had her HA on which is rubbish service from our audiologist.

    I have a real problem though. Her symptoms are worsening to the point she cant hear me when i shout at her and test her myself when she has no HA on. Im so worried and think in this last month - particulary 2 weeks, her DBHL will reach 90-100 plus. She practically cannot hear anything now. It makes sense in one way. Her hearing was paerfect around june (we think about aug though) and has been gradually worsened since then. So deaf dude i need to do something before i have no other option then CI. Trust me, i dont want her to have a CI, but if her hearing is totally demolished, then CI is the only option. But tbefore i go for CI, i am going to go for stem cells but chosing a treatment centre is complex as they sell themselves very much. Its chosing which one will treat her correctly - thats why i ask you let me in on something you know, or who has the best technology to treat her.

    ReplyDelete
  156. Before I'm convinced that stem cell research has even benefitted the deaf and hard of hearing to date,I want to see an earth shattering headline in a national newspaper stating so.If and when I'll be one of the first in the queue for treatment. Until then I am not convinced. Its a little the same as the amazing claim that by mixing a small amount of hydrogen peroxide in distilled water and drinking it every day you can cure every ailment including cancer. Its known as the 5 minute cure. Look it up. It has to be a myth in order to sell the $25 book to mugs.

    ReplyDelete
  157. harry,

    See if you can get a 30 day trial of Phonak Naida UP hearing aids. Let us know the results of her full test, including her aided thresholds. I hope her hearing loss stops progressing and does not exceed 100db or she might not benefit from HAs.

    Remember that a single CI costs $50,000 while stem cells from RNL BIO or Beike cost $30,000. You will be able to save for stem cells long before a CI. I personally will never get a CI regardless of how long I have to wait for stem cells.

    There is a choice, she could learn to lipread, write and even sign to you. To be honest, the biggest thing I miss is sound and music, but life really isn't so bad being deaf and when I have saved for stem cells, I will be happy to see an improvement in my hearing so I can enjoy hearing more sounds and hopefully enjoy music for the first time in my life.

    Tonytrouble, read about Chloe. But anyway, I feel that 2012 will be a great year for stem cells and I will post more news.

    ReplyDelete
  158. Hi Deaf Dude, thanks for the input. In UK, CI is free on the NHS service. So my daughter does not need to pay for this. However, i do not want my daughter to have this. Her symptoms are funny. They are fluctuating. She was really bad for 2 weeks where she couldnt even hear me shouting, but now she can. She was ill though. Chest infection. But we have realised her hearing levels keep going up and down.

    Presently Dr Bansal said he will take on my case and requested us to visit him in India. He does his stem cell treatment on research basis and are non progit. He successfully treated an american who had stem cell treatment in china which failed. He told me how he would do it and he knew his stuff about cannot operate to inject, cannot inject through ear, and he needs to inject through blood vessell. I am considering this as he is well known and a good pedigree. I am not wealthy but willing to sell everything to treat my daughter - be homeless i dont mind.

    I dont think my audiologist will let me get the Phonak HA. He programs them and fit them. Hes a stuck up person and when i speak about stem cells to him, he ignores the conversation. Stem cells are the future.

    ReplyDelete
  159. "Therapeutic Programs
    HEARING RESTORATION"
    source: http://www.fatetherapeutics.com/therapeutic-programs/hearing-program/

    ReplyDelete
  160. Harry, it's funny they push CI for free, but hold back stem cells. Doesn't matter, no CI for me, ill stick with my HAs as long as I have to till I can afford stem cells or if they finally offer it free.

    Don't be homeless as this is far worse than being deaf! As I have said before, all you need to do at this moment is find an honest audiologist and get your daughter a proper hearing test unaided and with her HAs in. Then ask for a 30 day trial of the best HAs and make sure he programs them properly so she is responding at 20db or better in the soundfield. Let us know how it goes.

    ReplyDelete
  161. Hey Deafdude, thanks for the response. They offer CI for free as the government pay for it. Its the CIprogramme people try and push it as they charge it to the government. Its a business for them!!

    There are so many fruad stem cell clinics at the moment. Its hard to trust any of them. As i have stated, i do not want a CI on my child. We are currently getting more tests done - 17th Jan - and a genetic test - connexin and pendrin. I am going to see a clinic in India (as i have to go on business there i might as well see his clinic as its only 200 miles away. He has invited me and said there is a 30-40% chance it could work but need good healthy stem cells and to see if it reaches the inner ear.

    The government really F me off as they know stem cells have great prospects, but delay everything due to many companies would go out of business and corruption in the FDA. Money talks in this world, which is a load of B. My audiologist is a gremlin, and didnt fit my childs HA properly, and the support we get is practically none. We are trying to get some one in to help my child - even if it means pay them, but my audiologist says no need. Its as is they do want my child to progress.

    Deafdude, keep me in the loop, if anything comes, let us know buddy. BTW, i watched 60 minutes, shocking about fraud clinics.

    ReplyDelete
  162. "First FDA-Approved Study of Stem Cells to Treat Hearing Loss Begins at Children's Memorial Hermann Hospital"
    source: http://www.marketwatch.com/story/first-fda-approved-study-of-stem-cells-to-treat-hearing-loss-begins-at-childrens-memorial-hermann-hospital-2012-01-12

    ReplyDelete
  163. We are one step closer to the reality we have all been waiting for. If they seem to believe this trial is good enough to test on babies, surely they know it is more than likely safe and most importantly that is will work. We all just need to hang in there, its coming.

    ReplyDelete
    Replies
    1. The FDA Trial is at Phase 1, therefore will take around 5-10 years. However, its great people are doing something.

      Delete
    2. Min 20-25 Years ..Bet

      Delete
    3. If the technology is proven safe and effective it will be 5-10 years. Not 20-25 years.

      Delete
    4. Min 20-25 Years ..Bet on it..no if no buts please

      Delete
    5. Harry, did you get your daughter's new audiograms? As for stem cells, forget the FDA, I for one am not waiting anywhere near this long. I might get it as soon as the end of 2012.

      Delete
  164. Can someone enlighten me on the type of deafness will be covered/cured by stem cell

    Mr daughter born deaf due to her mother suffered from rubella when she was 2 month pregnant

    Its not genetic but viral attack in prenatal conditions

    Will by daughter be a candidate for cure by stem cell

    actually I am still not clear on the deafness condition which can be treated with stem cell

    ReplyDelete
    Replies
    1. There's two types: conductive and sensorineural and stem cells treats the sensorineural kind, period.

      Delete
    2. Hi Deaf Dude, she has had her 1st phase of testing and at the moment she is around 80-95 DBHL on both ears. The audiologist says as she is so young, its had to get an accurate one so they will have to do this test 3 time. I personnaly think its better than that as without her hearing aids, she can hear me and respond to what i say. We will have to wait for more tests.

      I am visiting a doctor in India next month about stem cells. Want to see his acheivements and his site. He says no harm will be done to my daughter and will try his best - 30-40% chance of success. He has done miracle stem cell treatment on people with blindness and other problems so i thought no harm to see him as i go often to India for business.My worry is that my daughter could have nerve damage, or cochlear hair cell damage, plus could be genetic - not sure yet

      Delete
    3. Harry By 80-95 DBHL u mean her hearing threshold across all frequencies range.Or is this the minimum DBHL threshold she can hear

      Is this ABR,PTA( pure tone),FFA( free feild) or ASSR Results

      You can Do ASSR to give u more detailed Loss

      Delete
    4. At the moment, across all frequencies she varies around 80-95 DB hearing loss. Dont know what check it was, it was where they put sound in her ear and they test her reaction.

      Delete
    5. Its Pure Tone audiometry..

      ASSR keeps your child asleep which map brain response with sound

      Delete
    6. Harry how is your daughter vocalising Now..My daugher progress is slow at this moment

      Delete
    7. my daughter is progressing steadily, she reacts as normal and tries to speak words when i talk to her but, words come out unclear, but shes learning. It takes months for the brain to learn these new sounds, so i not worried at moment. I will be concerned by the end of the year if she does not learn ant new words!!! But, its weird, she learns words without the haring aids on aswell

      Delete
    8. Harry Good to see your daughter keeps you as confusing as mine..sometime i also ask question is she really hard of hearing

      Delete
  165. This comment has been removed by the author.

    ReplyDelete
    Replies
    1. shirshendu - im sure you mean deaf dude and not dead dude - LOL

      Delete
    2. Heheheh, Apologies..Typo Error

      Delete
    3. I have deleted the above comment/Post

      again sincere apologizes...if you notice its just a typo as D and F are just adjacent key tabs in keyboard

      Delete
  166. Deaf Dude

    I have Expressed My daughter condition of deafness,Let me know whether she can be treated with stem cell or not

    Regards
    Shirshendu

    ReplyDelete
  167. nandi, i dont think Deaf Dude could answer that as he is not an expert on stem cells. Yes he can tell you it works etc and its the future. When it fully get proved, yes stem cells could cure all known diseases. And yes your daughters symptoms. As its inner ear disorder (inner hair cells in cochlear - sensoneural), stem cell at present may not fully cure he rhearing but may gain her some positive hearing levels. She could gain 20DB. Every case is different, you may get 100% recovery, or 0% recovery. This is what scientists are checking, and researching - why it works inconsistantly. Until they prove its consistantcy - then the FDA will prove it. But you may be lucky and gete a good recovery right now - its about luck, the clinic and how it adapts to your body. If your daughter is fully fit and well, with no other illnesses/diseases, then the stem cells should make its way to the damaged cells in her ear.

    The doctor i spoke to, told me that it all depends on the stem cells. If they are of very good quality, and not dead cells - then you have a good chance. But many doctors doing bad treatment dont bother looking at the cells if they are dead or not. They inject the stem cells and hope. WRONG - they should check it. Dead cells can do damage to the person (low risk but still can do it).

    A lot of the data above is not my theories, these have come from people i have spoken to, emailed to etc. I too, as you know, am going to try stem cells for my daughter, but making sure i check the place fully. I am pretty confident within 5-10 years there will be a cure. I can wait for it, but want to gain a minimum of 20DB through stem cells in near future so i can help her progress for the 1st ten years as this gain would help her hear better with HA. I would not accept less then 20DB as it would not be worth it. If she gains 20 or above DB, i may try again the following year. As long as she does not fall behind in the first ten years, i can deal with it, then can look forward to proven clinics. Harry

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  168. Harry any chance that existing hearing threshold get worsened on event of the stem cell injected do not function properly?

    I wanna say can it bring down existing level..Do you have any info from expertise

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  169. Nandi, as far as i have been told, if you go to the correct clinics that follow correct proceedures, then the Stem cells wouldnt worsen the hearing symptoms. I have asked the question and they told me that procedures, living stem cells, and method is the key. Also, as stem cells are not fully proven for long durations, they cannot guarantee that your symptoms would reappear. Meaning, if you get treated, and your symptoms are cleared, the clinics cannot guarantee that your disease would appear in the future.

    I have been told, no harm would be done to my child, and they will show me the procedures, methods and told me the key is how good the stem cells are. Also there is a 30-40% chance of working. Honesty is the best policy. Another company called vistastemcell said they guarantee a success. But success they said could be non progression of the diesease, some hearing gain. You need to do your research. I have contacted at least 20 stem cell clinics and found only about 4 that were worth investigating to take my child. Email people/clinics and you can tell if they are talking rubbish by what they say, patient history, webpage, no credentials etc. Then research the clinical doctor. You would be surprised in what you find out. E.G i researched Dr Ramirez, clinic in mexico, and he has a bad name, but he talks as if he does miracles etc. Then check if the clinics are ICMS registered. This is not that critical as many clinics dont agree with ICMS. But ICMS try to help. COntact them. They will tell you a lot of info on stem cell clinics. I did some hard core research for 3 months, and found out many people are con artists. Go with your gut, and dont rush it. You will know who to choose when it comes up. Thats what happened to me.

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  170. Harry has done his research on stem cells. I don't have any additional news at this time, but feel free to read my older posts.

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  171. I brought my daughter to visit American Stem Cell in Quito Ecuador, they are members of the ICMS. My daughter was born with sensory hearing loss. After the stem cell treatment my daughter regained hearing, I do suggest contacting this extraordinary and beautiful clinic. www.stemcelltreatment.org

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    1. Can you post you daughter pre and post stem therapy hearing levels -audiograms

      Can stop myself asking many questions

      what was here hearing level when she was born and got the treatments

      was was her reason of deafness ( if known)

      How much did she benefited post treatment

      How long will these new generated Cochlear cells will continue to last ( any details on longsivity and life of treatment given by the center)

      Cost?

      Sucess rate of the clinis treatring hearing loss ?

      Delete
  172. Anonymous,

    Can you post you daughter pre and post hearing levels -audiograms

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  173. Nandi, be careful of people who post these articles on here. They are agents or work for the stem cell clinics. Their aim is to reel you in and pay thousands of dollars for treatment that may not work. If he/she is genuine, they would leave name, have blogs, have media records, have websites articles, and give you their details. I know i would. Its just so vague.

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  174. They are also PENDING accreditation, and NOT certified yet. Danny Glover seems to have had treatment. will have to investigate this clinic. I will let you know what i find out.

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  175. This comment has been removed by the author.

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  176. Thanks Harry..actually I am mentally very weak now a days for shruti and easily fell in trap when i hear something which had treated someone,thinking if i also try shruti can also lead a normal hearing Life.

    I feel so helpless as a father inspite of living in such a medical rich world cannot treat her because there is no bloody treatment..

    Iphone can also hear and recognize human voice and also speaks back..why not these guys in FDA dont understand thing Humans need to hear Voice more than machines and gadgets ...If machine can be made to hear and speak languages why not humans .Why Humans are being deprived of this beautiful gift of GOD....VOICE and HEARING

    Pls FDA...Enough Business,Politics and Money making done Now its time to get back to Humanity

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  177. Nandi, u need to be strong. I went through the same phase, depression, suicidal, but your child needs you to be strong. I basically do things to help her now, and i see an improvement - massive. She dont like to go slepp so an hour before, i threaten to put her sleep, and she doesnt want to, so i bribe her. In the bribe i make her copy my words. We do this for 30-60 mins a day. And now she tries to count to 5, says words. At the moment, its very fuzzy, but shes trying. Her brain is learning these new words so shes getting better. A month ago, she couldnt say mummy, she says it clearly.

    Its a patient game. In this tuition, loads of songs, card games and words.

    What is shruti?? I know what koravati is, but not shruti.

    You have to bribe your child to make them learn. I will try stem cells but being a bit patient at mo. Who to trust is a question. You should join other forums like i have. Loads of info on stem cells

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  178. Have a look at this link. This happened in Ecuador.

    http://investorstemcell.com/stem-cel...uador-surgery/

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    1. Anonymous Your link is a fu**ing as you are..Its lost as you

      Delete
  179. Now now, no need for bad language - http://investorstemcell.com/stem-cell-research/paralysed-man-died-after-ecuador-surgery/

    You happy now and not got your knickers in a twist

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    Replies
    1. Do one thing get yourself treated and get back with results and offcouse dont be anonymous like me, as you will loose your identity as your posts..

      Dare enough Give real Name and details so that you messages be of trust

      You must be laughing one stupid anonymous is trying to teach me ..well in that point i would say For mine being anonymous dont matter anyone here as I am not spreading any message,But You do

      Pls stop these unwanted rumors flow around and Pls be sincere to atleast this group there we are are fighting and dealing for a cause

      Delete
    2. Well anonymous Guys Pls stop fighting

      I did a analysis of the post and See the stupidity of the Post it says

      :However, immediately after the surgery in August 2009 at Hospital San Francisco in Guayaquil, Mr Chick slipped into a coma and died five days later. An inquest at Croydon coroner’s court found that Mr Chick died from “intracranial hypertension” which caused a heart attack. "


      what is the good reason for the Old lady to wait for 5 years and letting the world now after his son die. why not immediately he went to Comma

      2nd stupidity

      the man went to coma at 2009 and he died 5 years later huh I recently welcomed 2012 on 1st Jan .

      well if its 2014 today then I should be in comma after Reading this Post .

      Thanks for giving us a ride on time machine



      Keep on trying hard !!!

      And My wise suggestion analyses yours links before posting...

      Hhahahahaha....Laugh of the Century after reading Joke of the Century

      Delete
  180. Little confused, but agree, stop spreading rumours and giving false hope to people. Apparantly the story is true as im based in UK and it has been in many papers here. But he had an underlying cause which wasnt mentioned. So theres a flip side to this. The clinic probably did there job but the patient did not fully mention the symptoms/ or did not know he had this underlying disease.

    If you type Ricky Chick stem cells in google, you will see there are many repors and newspaper articels - so the story is true, but theres a flip side.

    I am receiving some info soon about hearing loss cures from a few clinics. Obviously they could be bogus but will let you know what they say.

    Honest, legitament - Harry

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