Friday, March 5, 2010

I visited hearing dispenser for new earmolds. Got new audiogram. Discussion on stem cells, connexin26.

This is my most recent audiogram(March 5, 2010) using Madsen conera audiometer. I was shocked to see how bad my lows were, but was told the Eartone A3 insert phone results in worse lows because it eliminates vibrotactile responses. She said the inserts are the way to go over headphones as they are more accurate, especially in the lows. She didn't test 1500Hz(probably 120db HL) nor 8000Hz(ha, won't hear 95db) She did give me a SRT(at 105db HL) with spondee words and out of 20 words, I got 2 right. Anyone know what this would translate for sentences? She also said she only sees 2 people a year with a loss as bad or worse than mine. This got me thinking about stem cells and how ill be happy with 20db improvement, but more is better. I read a study on the internet confirming this was the case. I wonder if my 60db HL at 125Hz with headphones was partially vibrotactile? I doubt the 75db HL at 250Hz is enough to feel any vibrations though. As for the mids and highs, they are exactly as I expected. This audiometer can actually go to 125db HL for some frequencies and I actually didn't hear/respond to 4000Hz at 125db HL! I don't recall hearing any whistles or high pitches but felt pressure in my eardrums. I responded anyway and this must explain my "hearing" at 2000Hz and 3000Hz. This may also explain why many people's audiograms flattens/levels at or around 120db HL, they are actually responding from "feeling" the sound as pressure in their ears(not to be confused with feeling vibrations at 125Hz and 250Hz)



I have recreated my audiogram using audiogram maker to make it easier to read. The "S" is the attenuator limit for the Madsen conera audiometer. I was shocked to find out it can go so high in most frequencies, especially 1000Hz! I have an old audiometer at home that maxes out at 110db HL(for 500-6000Hz) The 6000Hz(105db HL) and 8000Hz(95db HL) are only 5db less than what most other audiometers max out at which is 110 and 100db HL. But if you can't hear, it doesn't matter anyway as no HA will help you at 6000Hz and 8000Hz. No HA will be of much use above 500Hz for me, that is, till I get stem cells and if it works.


This audiogram was on my old audiometer. This time, I had proper earplugs to simulate a mixed loss. The purpose was to see where I can feel vibrotactile stimulus. No wonder some audiometers only go to 70db HL at 125Hz and 90db at 250Hz. That's because some people will start to feel vibrations from their headphones around those levels. Some people may even feel vibrations at 500Hz at very high intensities of 115 or 120db.

Let me show you some links to connexin26. Read those articles for yourself, understand the facts and compare audiograms. The audiogram I provided above explains the range of hearing loss one usually has due to connexin26. One can see that stem cells should still give me significent benefit even if I had a genetic hearing loss. The phenotype can be altered by environment. Stem cells won't change my genes, but it can change the phenotype and thus improve hearing. I read that people with the exact same genes can have varying audiograms, typically in the severe-profound range.

Audiogram image.  Another audiogram image.  Good article on connexin26, 30  missense mutation audiogram.   GJB2 mutations with audiograms.  Different genes/mutations and HL.  Another article with audiograms. Research on HL. Long article on gene HL. 



My dad mentioned earlier today that even with a 100db HL(if stem cells gives me the above audiogram), this would be a decent improvement over what I currently have. You can see that I would outperform a CI by a mile in the low frequencies. I would match or come very close to CI in the mids and even in the highs, be only 5-10db behind, but with transposition(S symbol) I would outperform CI. 92db PTA would be about 12db worse than the average CI, but because the lows are so good and because the HAs are optimally programmed for maximum gains, youd hear more like only 5db worse than CI or so. Thus, youd score 70% on HINT-Q with hearing this "good". But id much rather have this audiogram than CI because the stem cells required to hopefully give me this hearing(or possibly better) would cost far less and be far safer with no surgery required and id preserve my residual hearing and can always get additional treatments. Id also benefit by being able to hear the lows unaided. I have discussed this in depth in previous posts. Thanks for reading! Ill keep you up to date, it may be another month before Nepsis has results of those 2 pioneers who probably already got stem cells. If their results and others are favorable, I will consider going ahead in a year or two.

77 comments:

  1. FUTURE THERAPIES FOR INNER
    EAR REGENERATION
    Albert Edge
    Harvard Medical School
    Massachusetts Eye and Ear Infirmary
    source http://www.usher-syndrome.org/index.cfm?pk=download&id=10711&pid=10258

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  2. CI will be straight across. It will NOT drop in the highs. You should expect at the worst 30 db, straight across.

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  3. Depends on the person. Most people hear the best around the 1000Hz mark and it goes downhill above and below that. Many of the audiograms don't even show a threshold at 125Hz nor 8000Hz and some don't show 6000Hz either. You need to have the CI electrodes inserted in deep to get to 125Hz and even that, youll be lucky to get 30db. I talked to CI wearers and they say they can't hear the bass or the hum of machines while they can in their HA ear.

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  4. I need to combine all my audiograms but I don't know how to do it like you


    L

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  5. "CEIT-IK4 designs a tool for operations on people with severe or profound auditory loss"
    source: http://www.basqueresearch.com/berria_irakurri.asp?Berri_Kod=2599&hizk=I

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  6. Anonymous, Just upload them at imageshack or imagechicken and link it here.

    Miguel, are you in the process of getting stem cells? I thought you posted elsewhere that you were getting it in China.

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  7. deafdude, I'm still not treated with stem cells. I know there's another person who is treated in China, I know from another forum, but I know no more.
    greetings

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  8. Deafdude, i want to put them all on one graph

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  9. deafdude,

    I am curious about how much speech you are able to understand by lip-reading alone. When you are wearing your hearing aids, how much does your lip-reading improve. I'm not a technical person at all but I do find this blog fascinating.

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  10. You are wrong deafdude. As a professional in this field, I have see 30-50 audiograms, in my hands, a YEAR, and they do NOT correlate to the level of hearing loss. They do NOT drop in high frequencies. In fact, most audiologists try to have then peak upward, towards 15 db in the highs, especially for children, so they can access "f" and "th" sounds.

    You are quite mistaken and you need to speak to an implant audiologist. You are doing yourself and your readers a disservice.

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  11. Dude,
    You are hoping against hope. There is no fix for connexin 26. They'd have to do gene therapy first to fix the connexin 26 defect in the stem cells. And then hope the stem cells work. I think that's a double-whammy that's way further off in the future as a research goal. When you say "stem cells change phenotype" -- whaaatt? How are you going to get the stem cells to produce correct connexin protein? If it can't make the protein, the new hair cells made from the stem cells will just not work and then die. No self-respecting stem cell researcher would tell you otherwise.

    With connexin 26 as the cause of your hearing loss, ironically, you'd probably do great with an implant (and even better with bilateral cochlear implants). It's funny how resistant you are to it. People with connexin 26 hearing loss usually do great with implants and usually require pretty low stimulation levels. If you are oral and like speaking and listening, why not hear now when you can? Oh, and you are not a hybrid CI candidate. You have too little hearing in the lows. You are a conventional CI candidate.

    I think you may be interested to know, though, that there is a US company right now doing gene therapy research for fixing hair cells, backed by a big pharmaceutical company, but their first subjects are not going to be people with a genetic cause for their hearing loss. They will be people who were hearing and lost their hearing to ototoxic meds. Here's an article, in case you have not seen it: http://tinyurl.com/ya55gsg Apologies if you have.

    But I would really recommend you have a chat with implant users face-to-face. I think you are missing out.

    (BTW, audiologists don't test the inter-octaves unless there's a 15 dB or greater difference in the octaves -- that's why some intermediates weren't tested. Also, getting "2 out of 20 on an SRT test" makes no sense. The SRT test isn't out of any number -- its purpose is to find the threshold and works much the same way as finding a pure tone threshold (keep dropping in level and then step back up until person gets 3/5 spondee words right.) If you were given a test with monosyllabic words, that's not an SRT. The score for an SRT is in decibels, and the words are spondees -- two equally-weighted syllables. The score for word recognition is a percentage.)

    I totally agree with the preceding anonymous when you say you are doing your readers a disservice. I think you are misleaading yourself. Stop obsessing and start hearing!
    Of course, you have no hope of doing well with an implant because you are so darn dead set against it. In fact, you might not even be a candidate for that reason. The implant team will be reluctant to implant because you are so against it.

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  12. Hi DeafDude,

    20 years wait for Stem Cells! My God! I can't wait that long even it's 3 to 5 years, I'll lose my job(maybe). Not in my country, there's no stem cell on hearing loss. Can't afford to pay for the treatment.

    My hearing loss is the result of my work due to environment noise. Like generators, Air-con machines, even airline engines(I don't work with airlines, at the airport I mean. It's sudden blast from the engines when I drive by) It's the long exposure I guess.

    I have a complete loss in my right ear 1K Hz and below at more than 110Db. My left ear is dropping and is continuing to drop from 70db to 80db for freq 500Hz to 1K Hz. I think will still be dropping. I had improvement before this(left ear), the last time it drop to 90Db but slowly it raise to 70Db. Sadly the Docs here doesn't know why. Medicine for anti-virus/steroids did not help but I think it does stabilize somewhat.

    I hear my audist says that he has a HA that will help to improve my hearing for my left ear but the cost for one is at US$2,500 estimated (way tight for my pocket). He ask me to try it out before my decision to use CI. What do you think DeafDude? Should I go for better HA or go CI? (or even wait for stem cells)

    My current HA is not very good, what a waste it was purchase about 6 months ago at US$1,000 estimated.(the last time it was at 40db at 500hz 60db at 1KHz which was ok than but not now)

    My problem include Tinnitus and Imbalance, I really don't know whether CI will remove tinnitus or even heal my imbalance or even the vertigo attacks.

    It sad to know if I choose CI over Stem cells since CI implant will not work with Stem cells.

    Andy

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  13. Andy -- yes, a CI can help tinnitus. I just heard that there are even a few people out there that have near normal hearing in one ear and a CI in the other put in to get rid of debilitating tinnitus. And they like it.

    Also, it sounds to me like maybe your hearing loss is due to Meniere's disease (which causes low frequency hearing loss, tinnitus, and attacks of vertigo), and not due to noise exposure. Noise exposure starts as a high frequency hearing loss.

    Talk with actual CI users (in person, not on-line) to get their experience. Go to a cochlear implant center for an evaluation, not to a regular audiologist who may not have experience with implants or may be more interested in keeping you as a patient to sell hearing aids to.

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  14. deafdude -- your statements about CI hearing are misleading. Many people with CIs end up with a flat audiogram across the frequency range of around 15-20 dB. (My son hears at 10 dB at 8000 Hz w/CI). It's a trivial matter to adjust the implant settings or microphone sensitivity to give 0 dB but that would amplify too much background noise and sacrifice speech intelligibility in most settings.

    But it seems like you just want to believe what you want to believe and prop up your beliefs with whatever you can find, and then misinterpret that to suit your beliefs.

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  15. To Anonymous,

    If one ear is normal, that’s not too bad. But it’s both ears for me. Tinnitus is on both ears too. The right ear is the worst. I don’t think CI will deal with imbalance.

    Not due to noise exposure? Meniere’s disease causes low frequency losses? Well, I have already had high frequency losses for over 10 years. The Doctors (ENT) over here doesn’t know how to deal with Meniere’s disease.

    Left Ear tested on 11-Jan-2010. Deaf without HA.
    250Hz = 90db
    500Hz = 80db
    1K = 80db
    2K = 105db
    4K = NA
    8K = NA

    Rigth Ear
    All above 100db to 120db. Can’t hear any tone. Pracitically deaf although I can still hear my electronic alarm if I put it hear my ear (less than 1 inch away).

    Even CI is way out of my pocket but still will see the Dr. for the CI today as the hospital is also the Cochlear Implant Centre and to find whether I’m suitable for it. CI implant carry some risk due to surgery as I had some I know whom a growth in her ear. After the surgery, she was unable to close her left eye and had a minor facial muscle weakness. She now seeing the Chinses Doctor and I last heard she was doing well now. Kind of scary to hear this makes you think more than twice about CI.

    I also hear that CI uses some form of silicone in the implant which is cancer causing. Is this true?

    If a better and costly HA can improve my hearing, I rather have HA than CI.

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  16. Deaf Doomsday Clock Strikes Midnight At 2016!
    http://eyefirevlogs.com/eyefire2/?p=2929

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  17. Let me address all your comments in order.

    1. I understand around 80% lipreading without HAs, 90% with.

    2. http://deafdude1.blogspot.com/search?q=cochlear+implant

    CI gives around 40db. Also read some CI blogs, most people are hearing much better in the mids than the lows and highs. Getting to 15db in the highs is truly amazing, I see few people like this. If you are constantly getting your CI patients better than 40db, you are truly a master at programming their CIs. This is a compliment to you sir.

    3. How do you know I have connexin 26? I havent been tested yet. Second, I am getting cord blood stem cells from a hearing baby. Others that went this route achieved improvements in their hearing. If I don't have connexin 26, this doesn't rule out other genes. If I do, they are working on a protein that can be injected together with the stem cells.

    I don't believe in hybrid CI when I have transpositional HAs. Once stem cells improves my hearing, ill fire up the transposition to give me access to the very highest frequencies.

    I have not seen any CI wearers since I went to a summer camp for the deaf when I was little. CI back then was for those who heard 0% with HAs. I did read a bunch of CI blogs and commented on a few of them. Ill give them credit for an impressive result, but I am holding out on stem cells which will easily give me way better for cheaper and less risk. Those with CI will have to miss out on stem cells.

    4. Andy, why didn't you wear earplugs and earmuffs? I think your loss may be genetic as NIHL usually only results in a mild to moderate hearing loss then loud noises become much more quiet. How much of the CI cost will insurance pay? Will insurance pay for stem cells soon? The silicone in a CI does worry me, I don't want any silicone anywhere in my body. If your hearing keeps getting worse, don't waste that $2,500 on a new HA that won't be much use. Start saving up for stem cells. In the meantime, learn lipreading while you still have some hearing because itll be easier. I wish you the best.

    5. Read response #2. that shows CI getting you to 40db. If it was so trivial to set it to 20, 15, 10, even 0db then why don't all CI wearers hear that well? Ive only seen one person at 0db and a handful at 10db. I can get to 0db with HAs in the lower frequencies after stem cells and 10-20db in the mids and highs.

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  18. DeafDude,

    I visit the Dr. yesterday. The blood test shows I have Anticardiolipin IgM Antibody at Indeterminate range of 15.39 MPL. (this is my 5th Dr. Seems like this Dr. knows better at the same hospital and He’s a professor).

    12.5 – 20MPL Indeterminate
    20-80MPL Low to Medium Positive
    >80MPL High Positive

    I don’t know what is anticardiolipin but I read that it can cause blood clot, antibody that attacks the body cells (good ones), causes miscarriage in women, etc.

    Doesn’t look good for me if I have surgery. This can cause facial muscle problems or worse. Also can cause in block veins or artery. The Dr. referred me to another specialist to check my condition. Have to wait for the appointment until next month with the specialist.

    That was at least 20 years ago when the work place management had very little interest in ear protection. So I quit working at the airport after 4.5 years. They were not convinced NIHL would cause deafness (the problem when you start to aged). The problem is not that I’m working near aircraft engines, sometimes the idiots test the aircraft engines at the wrong place at full blast near the drive way where the aircraft is park (At aero-bridges where the passenger disembarks or embarks.) although the airport authorities to not allow testing in that area sometimes… well you know. I can tell you the db level is above 200db from the engines! Most the companies I work for the last 20 years ago have no interest in ear protection. I use whatever protection I can fine like tissue paper, rubber parts, etc. In most situations it’s impossible to have ear protection as I’m also handling emergencies like power failures, equipment failures, etc. Make me wish I had purchased my own personl protection. Sign.
    Andy.

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  19. Where are the links to all these people who hear at 40 db? Go to www.cicircle.org and go to "Parent's blogs". You will find 20+ audiograms with ZERO hearing worse than 25-30 db straight across. ZERO!

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  20. DeafDude,

    PS.
    No insurance (as I recalled) but have to check my personal one for it and not even stem cells. CI cost at a region of US$15K+ here. I might able to get some discount from the local hospital. Maybe half of it or more.

    Hmmm, lipreading. Well got to search here for lipreading I guess. I hope there is one here.

    I don't remember where the web site I read that CI had silicone. The implant sample at the hospital shown to me, the sample looks like soft plastic just like silicone. Makes you wonder is that the truth.

    deafdude, is there any real benefit with better HA assuming my loss is not great say not more than 80db or 90db? Seems to stop at 80db yesterday the Doc said it was slightly better than the last time. My audiologist says with a good one, he can improve my hearing. Is this true?
    Andy

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  21. Deafdude -- You are so clearly not an audiologist. So why are you dispensing all this erroneous advice? Noise induced hearing loss (NIHL) starts as a mild loss in the high frequencies, but can get much worse! If someone works with loud machinery for years and does not protect their hearing, they could become deaf. Anyone reading this should do a Google image search on "noise induced hearing loss audiogram" and you'll find that there is a characteristic audiometric signature to noise induced loss.

    You are also incorrect in your statement about "then loud noises become much more quiet" Since NIHL is a sensory loss, actually, most people with moderate sensory losses perceive high decibel level noises as being just as loud as people with normal hearing. It is just the sounds softer than their threshold that they can not hear. (Conductive hearing losses, where there is some kind of physical blockage to sound, do make loud sounds be perceived as more quiet, however.)

    And Miss Kat's parents are 100% correct. My son's thresholds with CI are also all around 20 dB. He does indeed have a very talented audiologist, but he's by no means unique in his performance with the CI. He can talk easily on regular phones without any special adapters or even using his telecoil switch. His word recognition scores in quiet are over 90%. His scores on sentence tests, like HINT, are 100% in quiet. CIs really do work, but they won't work for you because you won't let them. Forget about the CI for yourself. You are not a candidate out of stubbornness. And given your history of hearing loss, you are probably not going to be the first one for whom stem cell treatments are offered, at least not in controlled trials in the US or Europe. You will just have to continue on with hearing aids.

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  22. Andy, if your hearing stays at 80db, youll derive great benefit from a properly programmed HA set to maximum gains. Youll be hearing at 20db or better. Look on the internet to purchase a HA for half the cost of a local dispenser. The online audiologist can reprogram it and mail it back to you till he gets it right.

    $15,000 for a CI is far, far, far more than what a good HA will cost you and theres risks to the surgery. Over here, it's $50k for one CI and the stem cell centers want $20k to $30k to treat both ears. They say stem cells is way better than CI across the board. One of the doctors said I can wait a year for plenty of results to be out then. Should they be successful with stem cells on the pioneers of 2010, I will go ahead in 2011.

    Miss Kat's Parents, I checked out some of the blogs you linked me to. 75% of them have no audiograms, but those that do, they are reporting CI anywhere from 10db to 40db. All of them say their kids derived little benefit from HAs, but a couple of them showed unaided/aided hearing audiograms. No wonder they can't hear with HAs, a gain of 30db is the same gain I get from my $50 sound amplifier. My dad saw those audiograms and said he needs better HAs programmed at maximum volume. My $5000 HAs give me 70db of gain and if my hearing was 20db better(hoping for that with stem cells), id hear a high percentage of speech and be aided to 10-30db across. Dad doesn't think 0db is possible due to internal circuit noise. He says the HA's amplifier is analogue while a CI is 100% digital so theoratically, 0db is possible on CI. Only seen one person(which I have a post on) who did get 0db, she holds the CI record. I am fine if my audiologist can't aid me to 0db, anything better than 20db is just icing on the cake as 20db is considered "normal" and would put me on top of the speech banana.

    Anonymous,

    NIHL first takes out the highs and creates a 4k notch. Most people realise their hearing is being damaged before they become deaf from noise. Once deaf(not moderately HOH) noise becomes quiet unless we are talking 120db.

    When did your son get CI, what was his HL unaided and with HAs and his speech before CI? What kind of word test and is the 90% phonemes? His CI results are absolutely amazing and ill be happy just to match that with stem cells and HAs. Im Googling up CIs vs. HAs, to the best of my knowlege, an 80db loss with HAs is equal to CIs. I see people score 100% speech with 80db loss with proper HAs. I am not waiting 10+ years for stem cells in America. I have plenty of threads on stem cells for your reading.

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  23. Thanks DeafDude, for your opinion on the better HA as a user. Will decide once I visit the Specialist Dr in mid April 2010.

    I don't really know anticardiolipin antibody can do to my immune system. Hope the Dr is a good one.

    Andy.

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  24. DeafDude,

    I failed to mention that I also had a hole in my left eardrum. It’s an oval shape at about 3mm diameter. But I don’t think that’s important, as I didn’t loose much of my hearing years ago. (250,500,1K around 30 to 40Db and 2K above around 50 to 70Db). I did not patch the hole, as it did not cause any problems. I hear that even the repair would not improve my hearing and it also might cause Tinnitus. One Dr told it not worth to patch up the hole since I’m not having any problems. I had sinus many years too before I loss my hearing. Strange, my sinus disappeared before I loss my hearing.

    “Audist”? I meant “Audiologist”. I didn’t know that has a different meaning. lol

    The hospital staff on CI says that there’s no guarantee that my hearing will improve as it depends on individual’s responses to the implant. They wouldn’t give me a figure either. It may be the same as what I’m hearing now with the HA on my left ear or sounds like a robotic voice. I read that it’s skill of the surgeon and luck. If my immune system is causing my hearing loss I don’t think CI will work for me as hearing nerves to my brain is already having problem.

    Over here while the CI may look cheaper, it might be an older version. So I don’t know what version/type they would give me. It appears they have many version/type. The actual cost may not represent the continuous consultations and visits and other unknowns. That may drive the cost up. Batteries too.

    I did a search on CI implant silicone, it appears that some people have allergy to silicone but these are very small groups of people. One had to remove the implant as it was causing infection. Still in their opinion (makers of CI implant), says it safe in humans. Well, will check with the Dr on my allergy too.

    Andy.

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  25. My son had hearing aids from ages 1-4. Unaided thresholds were in the 85-100 dB range. Although his aided thresholds were in the 35-55 dB range, he had no open set discrimination ability, and used sign+voice to communicate. Vocalizations were mostly vowels (probably all he could hear well) First CI at age 4, second one 4 years later. Incidentally, both 100% covered by insurance (the majority of US insurance plans cover CI surgery, no need to shell out $50K.)

    The 90%+ word score is complete words. Phoneme score is higher (one or two wrong). I think the set was PBK (for children) I don't think his results are that amazing because I know many other children with CIs who score similarly. He functions much like a hearing person in the house -- I can talk to him through closed doors and from other rooms/upstairs/downstairs and in the dark -- he does not rely on lipreading. He does prefer captions on the TV, especially if there are background sounds or music.

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  26. whoops - I meant 85-110 dB unaided

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  27. ""If you are working on cells for the inner ear for deafness, we can provide cell lines to help achieve that," West said".
    source: http://www.contracostatimes.com/business/ci_14838699?nclick_check=1

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  28. "Hearing Progress
    Update on RNID’s biomedical 2010
    research towards a cure"
    source: http://www.rnid.org.uk/VirtualContent/84925/HearingProgress2010.pdf

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  29. Thanks for the link, Miguel! It's been 6 months since Chloe had her hearing restored to near normal. Wonder how she's doing and if her hearing is still as good? Also does anyone know of more success stories from the stem cell labs? How much improvement? What was their before/after audiograms?

    I also wonder how soon we will see widespread public clinical trials. People are already getting treated privately in China, Mexico, India and other countries. If we see more "Chloe" successes for 2010, I will consider treatment in 2011. A 25db improvement, which is what we have seen among most pioneers would be significant to me.

    ------------------------------

    Initial results are very promising, with all six
    models showing that the cells transplanted
    into the ear developed into the correct type
    of cell. In this case, the team had ‘told’ the
    stem cell to turn into a hearing nerve cell. After
    several weeks, the cells were still in good
    condition and had started to grow towards the
    right location. Even more promising is the fact
    that the models showed a 25dB improvement
    in their hearing thresholds, indicating that
    this early research is a step in the right
    direction towards achieving the ultimate goal

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  30. It means those with mild to moderate hearing loss (hovering at 50 dB) would get back our hearing , with the 25 dB improvement !

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  31. Will the treatment that worked on Chloe Sohl also cure noise or pathogen- induced hearing loss or just autoimmune hearing loss like she had?

    Are there any other cases of people being treated in the same manner as Chloe? Any links?

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  32. Let's hope they start human treatment next year using stem cell from Dr Rivolta.

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  33. How many people will pay tens of thousands for stem cells to go from 50db to 25db when you can get that with $50 sound amplifiers or better than that with $2000 HAs? I can see myself getting stem cells possibly twice for a 50db improvement but then ill be too broke to pay for a third time and at this point, my hearing will be excellent with HAs and half decent without HAs anyway. Ill wait a while for stem cells to get cheap enough before ill bother for that last few db improvement. Right now my goal is just to get my hearing in range where HAs can amplify me to near normal.

    Stem cells can treat all kinds of losses. The anti stem cell loons will deny this but studies in rats deafened by noise and/or ototoxic drugs have responded great to stem cells. The only caveat is losses based on defective genes, stem cells won't cure those genetic defects and it's possible you may lose your hearing again shortly after stem cells. I am getting tested for Connexin 26(I discussed this before) On my blog, I have a case of a young child who improved 25db.

    Anonymous commenters who have been in contact with stem cell centers have let us know of other successful cases. There may be another dozen people treated for 2010 and counting. I will be contacting Nepsis again soon and find out how many they treated and the results.

    Wong, when will Dr. R. start human clinical trials? Do you know for a fact that itll be next year? If so, this is very exciting and we can expect many of those people to be successful. This will make huge news and thousands of people will pay to get treated, including me.

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  34. I have about 35 db loss in my right ear, and 40 in my left ear. I'd like to restore my hearing where it was (I used to have near-perfect hearing), but I'm also hoping that doing so would alleviate or eliminate that tinnitus and hyperacusis I've acquired along with my noise-induced loss.

    I'd easily pay 10-20k for that chance. Even if my tinnitus remains, I'd have my full hearing restored.

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  35. I don’t know why there aren’t any Pop Stars or Actors supporting hearing loss on Adult/Repair Stem Cells. People like Phil Collins, Sting, Pete Townshend, William Shatner, etc have hearing loss including Tinnitus.

    Maybe if someone in the US can inform and educate them about ASC. We could get more funding and research to do a human trial sooner than expected. What do you think?
    Andy

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  36. It is my guess that Dr Rivolta may start human trial next year.

    My theory goes like this :

    1. Just last year Mar / Apr 2009, Dr Rivolta announced to the whole world his team is able to grow human hair cells in the lab. This is a World 1st in hunman history.

    2. 1 year on, to today, his team tested 6 animal models and initial results show they are successes.

    3. With gene therapy expert coy Genvec and Norvatis rushing to market their merchandise with a $200 war chest, surely Dr Rivolta's team must work fast and furious , in order not to be left eating dust.

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  37. ""The cochlear implant, introduced in the 1980s was the first device to replace one of the five human senses and was revolutionary. Since that
    time, most research was aimed at improving the CI. At this time, more attention is focused on stem cell and genetic treatment of deafness at the University of Miami Ear Institute. We believe that research will cure deafness, and human trials using auditory stem cells should begin within the next 5 years."

    (Thomas J. Balkany, MD, FACS, Hotchkiss Professor and Director, University of Miami Ear Institute, Professor of Otolaryngology, Neurological Surgery and Pediatrics, University of Miami Miller School of Medicine"

    source: http://www.staythirstymedia.com/news/44/349-kathlyn-maguire.html

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  38. Anonymous, have you had any luck with HAs for your 40db loss? Stem cells can improve your hearing and reduce your tinnitus. Wish you protected your ears from noise. Alot of people are gonna have to pay tens of thousands for stem cells to fix the damage caused by noise or live with HAs forever.

    Andy, maybe they already know about stem cells and are waiting for it to become FDA approved? They probably hear great with HAs anyway. Have you gotten your new HA for $500 over the internet?

    wongtanlim3, I hope you are correct. Is testing on 6 animals enough? Thought they have to test on 100s of animals for several years before they can test on humans. If stem cells wasn't exciting enough, there's a genetic option as well. I hope one or both options works for me and everyone else!

    When(not if) we see human trials for stem cells(and genes) in less than 5 years, this will prove all the "experts" and anti-stem cell loons who are predicting a timeframe of 15, 20, 30+ years all wrong!

    ReplyDelete
  39. "Laugh at Hearing Loss? National Hearing Day Celebration"
    source: http://www.i-newswire.com/laugh-at-hearing-loss-national/31275

    ReplyDelete
  40. DeafDude,
    No, I haven't tried HAs yet, mainly because I can hear well enough to 'get by' (speech recognition not always great though, as I have problems with the higher frequencies of consonants), and the cost of HAs was off-putting at first ($1,000+ for a device the lasts 3-5 years), and I'm still relatively young, I didn't know how people would react (vanity).

    Yes, I wish I had done more when I was younger to protect my hearing, but I was stupid. With our increasingly noisy environment, I think we'll be seeing many more hearing problems in the future. I've been educating everyone I know on the importance of protecting their hearing.

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  41. "Research Symposium

    “Re-Modeling the Deafened Cochlea for Auditory Sensation: Advances and Obstacles”
    Sunday, June 27, 8:00 a.m. – 11:30 a.m."

    source: http://nc.agbell.org/NetCommunity/Page.aspx?pid=849

    ReplyDelete
  42. What happened to Chloe?
    http://tinnitussupport92262.yuku.com/topic/11088

    ReplyDelete
  43. "RNID calls on industry to invest in treatments for hearing loss"
    source: http://www.drugdiscoverytoday.com/view/8974/rnid-calls-on-industry-to-invest-in-treatments-for-hearing-loss/

    ReplyDelete
  44. Stem cells and cell lines from the human auditory organ_a8974.pdf
    Stem cells and cell lines from the human auditory organ
    http://www.drugdiscoverytoday.com/article_download?download_id=177

    source: www.drugdiscoverytoday.com/view/8974/rni...ts-for-hearing-loss/

    ReplyDelete
  45. "Il futuro delle staminali e le prospettive per l’udito"
    source: http://www.svehk.ch/IMG/pdf/Vortrag_G_Soldati_-_Unterlagen.pdf

    ReplyDelete
  46. Deafdude,

    Well, the results came negative after the second test and still don’t know what’s the cause of my deafness. My hearing is not getting better.

    Let’s hope RNID and Rivolta can get funding and carry out human trials asap.

    Andy.

    ReplyDelete
  47. "The challenge of hair cell regeneration"
    source: The challenge of hair cell regeneration -- Groves 235 (4): 434 -- Experimental Biology and Medicine
    source: http://www.alldeaf.com/general-chat/77243-rnid-calls-industry-invest-treatments-hearing-loss-2.html#post1578517

    ReplyDelete
  48. http://www.wired.com/wiredscience/2010/05/stem-cells-hearing/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%253A+wiredscience+%2528Blog+-+Wired+Science%2529

    ReplyDelete
  49. "Wired" says we're 10 years away at least. I wonder what it will cost?

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  50. 10 years in America as they are behind in stem cell technology. Today if you travel around. I plan to get stem cells soon, perhaps next year outside America. It does work, ive seen the success cases.

    ReplyDelete
  51. "Stefan Heller discusses stem cell research on Science Friday"
    http://www.ethiopianreview.com/news/120246

    ReplyDelete
  52. Please see:
    http://www.regenocyte.com/

    ReplyDelete
  53. Someone who's against stem cells claims a "cure" for deafness isn't comming for a thousand years and she's betting the farm on it. She even knows about Chloe's success and claims it was just a fluke and that her hearing loss was nothing more than "autoimmune"

    Me and others have tried to show her that she's wrong but she does not want stem cells to become a reality in her lifetime. She loves being deaf and doesn't understand why anyone would want to hear better. Just learn sign language and join Deaf culture.

    I however am not interested in Deaf culture, I wouldn't fit in anyway. I don't sign but am a great lip reader. I would love the chance to hear better and am glad all the anti-stem cell loons are wrong. Read my other posts in my blog for the evidence stem cells works.

    I got ahold of news last month that another stem cell center has treated 12 people and most of them got a big improvement in their hearing! I will be contacting them and share the news here, such as how many decibals improvement, how many of the 12 didn't improve, what was their hearing loss like before/after treatment, etc. I am very interested!

    ReplyDelete
  54. "iPS cells and embryonic stem cells -- similar but not the same"
    source: http://cirmresearch.blogspot.com/2010/05/ips-cells-and-embryonic-stem-cells.html

    ReplyDelete
  55. Deafdude,

    That's great, another stem cell centre. I hope to see your news soon on these people.
    Andy

    ReplyDelete
  56. Lots of Americans believe stem cells are "snake oil" but we know stem cells works and it's available in other countries today!

    Regarding the Florida stem cell center, I got the news. The 12 people who had their hearing improved, they were actually treated outside America for other conditions and the stem cells also improved their hearing. Stem cells can treat many conditions and if you have more than one condition, stem cells treats however many different conditions you have.

    They can do bone marrow stem cells, but only using a simple method. They remove a small sample of your bone marrow, put it in a centrifuge then reinject the stem cell portion of the bone marrow thru a long tube that flows to your head. You are under general anesthesia for this. The idea is the stem cells in your head make their way to your cochlea and differentate into hair cells. They are not allowed to "expand" the small amount of stem cells into millions and they can't use other sources of stem cells.

    6 people have signed up at $9500 each and they will begin treatment in September. It's an outpatient procedure and should the results be positive for those who signed up, I will be next. I am skeptical that any patient will see any measurable improvement due to the tiny amount of stem cells. Stupid anti-stem cell regulations in the Bush era caused America to be 10 years behind! I will wait 2010 out and see what 2011 brings. I plan to get stem cells soon and most likley not in America!

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  57. This comment has been removed by the author.

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  58. This comment has been removed by the author.

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  59. "How to rescue from the SNHL"
    source: http://www.korl.or.kr/workshop/2010spring/file/25_0915.pdf

    ReplyDelete
  60. Thanks Gary,

    Already seen the site before you gave it here. Already known allergy I have and had avoided them. Anyway, a check from the blood sample shows no allergy symptoms. I'll see if a vegetarian and fruit diet can help. That's gonna pretty tough.

    Andy

    ReplyDelete
  61. forum france:
    "Article à lire... cellules souches..."
    http://www.france-acouphenes.org/forum2/viewtopic.php?f=9&t=710&start=40

    ReplyDelete
  62. That France forum talks about stem cells improving hearing and tinnitus. They also talk about Chloe who hears at the low end of normal in both ears. RNL bio is treating 4 more pioneers after Chloe and their results should be known later this year. The cost is $30k(plus travel) for 600m stem cells. I hope those 4 pioneers are as successful as Chloe!

    ReplyDelete
  63. No more hearing aids?
    http://mobility.mirror.co.uk/mobility-news/No-more-hearing-aids/

    ReplyDelete
  64. Three months and no new blog entries deafdude? Any news on those Asian stem cell clinics?

    ReplyDelete
  65. "Mechanosensitive Hair Cell-like Cells from Embryonic and Induced Pluripotent Stem Cells"
    source: http://www.cell.com/retrieve/pii/S0092867410003533

    ReplyDelete
  66. http://www.3news.co.nz/Drug-may-reverse-hearing-loss/tabid/1160/articleID/163997/Default.aspx

    ReplyDelete
  67. "Research Symposium: Re-Modeling the Deafened Cochlear for Auditory Sensation: Advances and Obstacles"
    source: http://cochlearimplantonline.com/site/?p=1958

    ReplyDelete
  68. I will be creating a new post soon with more information about hearing loss and stem cells. Some of you may have been in contact with the stem cell centers, do share the news in the comments and ill post it on my blog with facts. Ill also contact a few stem cell centers and share the news. There should be some new results now or very soon. :)

    ReplyDelete
  69. Have not heard or got any more info from you for a very long time.It is great to get info from around the world in CI,Stem cell and advancement in this field from your blog.Hope to hear an update soon.My lil girl speaks and sings, but a mum in me still is waiting for a day when she can give up her hearing aids and get stem cells to work for her.I keep fighting all the time with people who are advocating CI as I have seen more damage than good done to kids specially in India.Soon after detection the ENTs advocate CI for the purpose we all know...money.Hope to be able to break this sequence with my girl's speech as an example.

    ReplyDelete
  70. Thanks for your comment, rouchi. Ive explained in the past why im not a fan of CI and how stem cells is so much better, cheaper, safer. Do you have any audiograms? What db level does your daughter hear unaided and with HAs?

    Tell them your daughter does not need CI when she can hear with HAs and that better HAs would let her hear even more as it did for me. There's so much hype about CI and they are trying to push it on everyone, even those that don't need a CI! It's unfortunate because those with CI won't be able to benefit from stem cells in the implanted ear. I am saving both of my ears!

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  71. I agree, with you 100%.ENTs are after me as her speech is good and I too feel I want to keep that option for stem cell.The CIs are hounding new parents as well as kids who have developed language with HA and show them as their results!Just y'day I brain washed a new parent out of CI as within 1 week of diagnosing they have convinced the parent for CI!! I have been fighting this for 5 yrs now and hope to do so in future too.I too have written about this in my blog in the past.
    http://impemp.blogspot.com/search/label/cochlear%20implant
    http://impemp.blogspot.com/2009/03/our-chat-with-ent-specialist.html
    I would scan the audiograms, only problem is ,I feel her tests have not been done well, as the services in India are not done too well and if given are done with their materialistic gains in mind.I have been fighting it for a very long time.

    ReplyDelete
  72. Hi there,

    First I would like to thank Deafdude and all people who responded for their information. Gives me a lot to think about...

    We have a 7 year old daughter "Bien" who has progressive hearing loss on both sides. She now has a 80-90dB loss. When it gets worse she will be a CI candidate. It's almost sure that her problem originates from the hairs in the cochlea.

    Being completely deaf for a while (to wait for stem cell treatment in the future) is probably not an option because she needs to develop her speech. Therefore we will probably follow the doctor's advise to provide her with a CI at least on one side when the time has come.

    When I read about the pioneers who take the stem cell treatment already, it confuses me. When I look at other (scientific) forums, I'm reading that it will take about 10 - 20 years before science is ready to really perform stem cell treatment on people. We're only in the mice-testing stage at this moment. I'm talking about generating cochlear hairs in a testtube and then implementing them into the cochlea.

    Current status on stem cell treatment:
    http://www.hearinglossweb.com/Medical/cures/stem/stem.htm

    Can you please tell me what kind of stem cell treatment they already perform in Mexico and China (and maybe even the States)? Where can I find websites/forums about this kind of treatment? The least I can do is follow the latest developments closely. We're on the verge of a real cure for deafness..

    Thanks and keep up the good work.

    Best, Frank

    ReplyDelete
  73. How good was her hearing when she was born? How fast is her loss progressing? She should have developed speech by now as I did and I was born with worse hearing than what she currently has. I also had to make do with analog HAs and did fine. Buy her the same type of HAs I have and make sure the audiologist correctly programs those Phonak's for maximum gain.

    America is way behind in stem cells, that's why itll take 10+ years, but im getting stem cells in the near future overseas. Im not a fan of CIs, especially not today. Read my other posts and youll learn more about stem cells and understand all my points. It's possible ill get stem cells from RNL BIO who treated Chloe. The cost is less than a third of bilateral CI, the risks far less and if it works, can make you nearly fully hearing like it did for Chloe!

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  74. Hey! Who's deluded? And about what?

    Certainly not deafdude about stem cells!

    ReplyDelete
  75. "It has been shown that stem cells are capable of giving rise to neuronal and hair cell-like cells. Furthermore, some of these cells have been shown to have stereociliary-like protrusions and contain functional ion channels. However, little work has been done to determine if the hair cell-like cells are vestibular or cochlear, and, more specifically, what subtype of hair cell they may be. In addition, little work has been done to determine if the cells reach a physiological maturity that would make them capable of transduction".
    source: http://mit.edu/shbt/2010%20end%20of%20summer%20talks%20abstracts.html

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  76. Hi Deaf Dude,
    Let's talk. http://repairstemcell.wordpress.com/hearing-disorders/
    Regards
    David

    ReplyDelete