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View Full Version : Hey there, Hi there! ( tinnitus and hearing loss looking for help)



chaisewilson
09-14-2012, 11:19 PM
Seeing as this is the introduction section of the forum, I suppose Iíll get right to it. My name is Chaise Wilson; I am a 21 year old student, waiter, and more importantly a musician who lives in Michigan.

I have been involved in music of all different kinds from starting in choirs and church gospel groups all the way to my more recent hard rock bands for about the last 8 years of my life. In my entire career as a musician I have played live and seen live bands hundreds and hundreds of times. Unfortunately I never once wore ear protection. One particular night this past spring change my life completely. I was at our local rock bar seeing my girlfriendís favorite band. Because my girlfriend loved the band so much we went to the very front of the venue. We were close to the speakers, and although the music was so loud that it was hurting my ears, my friends werenít complaining and seemed like they were having a blast so I didnít think anything of it. I decided not to bother anyone to move our location.

That night, however resulted in permanent nerve damage, which has manifested itself as irritating and painful tinnitus. Not only do my ears ring constantly never giving me a moment of peace, I also have developed sensitivity to certain sounds. Dishes clashing together, dogs barking, babies crying, certain pitches of voices, and other sounds of that nature send almost an electrocuting sensation into my ears that is very painful. I have sense learned my lesson and carry around with me special musicianís ear plugs to protect my ears whenever I may be around dangerous levels of volume. Unfortunately, however, the damage has been done. I did see a doctor as well as an ENT shortly after the incident, but frustratingly their only advice for me was to wait 6 months and it might heal on its own. Aside from that, according to them, nothing could be done. Well that time has passed with no improvement, and my quality of life has decreased by some measure, and my life of musicianship just isnít the same. Iím constantly afraid that even with earplugs, that I will do further damage. Also my ability to pull apart tones and pitches has decreased with my loss of hearing.

I refuse to believe that it is over, and that is why Iím here! All my web surfing leads me to stem cells as being my only hope in getting my old life back. I have read many accounts of folks receiving stem cell treatment and having there nerve damage repaired. I believe I can be aided by this therapy even if it isnít super effective because my hearing loss is only minor as I still test at normal levels of hearing in my audiograms. Iím looking for Information, cases, clinics, doctors, and other people who are in the same boat as I am. Hopefully together we can start working towards a cure for this very disturbing condition. Thank you for any help in advance! Iím looking forward to being a part of the community.

chaisewilson
09-24-2012, 08:08 AM
Anyone else here on the board dealing with tinnitus/ hearing loss at all?

barbara
09-24-2012, 01:21 PM
There are other members who are, however, they must not have seen your post. Hopefully, one of them will respond.

Harry
09-24-2012, 01:40 PM
Hi there, sorry for late reply, been away and busy with personal issues. My daughter has hearing loss. She is 3 years old and has had a sudden loss of hearing last year. She was not born with hearing loss, as she had an ABR after one month and her hearing was 30 db or less. Something happened between 1.5 years old - 2 years old. All the medical doctors here in UK have tested her and said she does not act, seem like a child with severe hearing loss. The tests all came back negative - MRI scan shows everything is normal, heart scan, eye scan (as this can have a reflection to HL), blood tests, genetic tests - Connexin and Pendrin and other tests - All coming back as negative and inconclusive. Therefore the Docs have said they can do nothing more as they do not know the reason. My wife and i had tests done to see if we passed anything to her but again negative. None of our family have a history of HL.

So it brings me to this site to find solutions, help, and anyone who has has Stem cell treatment for HL. I am looking to help my child and am speaking to many people - but who do you trust. They ask for upto $30,000 with no guaranttee. I am not pushing my princess for a cochlear implant - as once you go there, theres no return. If you want any advice i can try and help but i am looking for a path a treatment for my child. Its not fair that she has to struggle to communicate when there is no conclusive answer why this happened - did someone do this to her - is the question i ask myself. Did someone give her a drug. There are many evil people in this world that are jealous, and want to harm people, and i hear this does happen. But your mind can go crazy thinking and thinking why oh why.

Well im still researching, and trying to be strong as sometimes depression kicks in and i go into my shell.

Hope we can all find a solution

chaisewilson
09-24-2012, 10:19 PM
I am very sorry to hear about your daughter... just as I was about to come to this board and check the thread I came across this on the "Action on Hearing Loss" website where i posted this same introduction.

Check it out:http://www.actiononhearingloss.org.uk/ it is the front page article Referring to a breakthrough stem cell trial. Seems like hope is on the horizon.

If i may ask, which clinics or doctors have you spoken with? That is the part of this whole procedure that I don't know how to start. Being that i'm considering experimental treatment I would like to consult with a few clinics/ doctors. In a perfect world, ones who have also had experience in treating hearing loss/ tinnitus.

When you google stem cell clinics, about a million or so links pop up. Most of them have nothing to do with what your looking for, and those who do appear shady.

I have looked through the " ask the doctor" section here rather quickly and found lots of useful information. Not one who spoke of treating hearing loss other than the Former " Nepsis" ( spelling?) center which according to the thread, appears to be no more? Am I missing something?

I would love to help others as the help me work our way through this interesting maze of possibilities.

barbara
09-24-2012, 11:19 PM
You can use the Search function on this forum to search for posts on hearing loss. I used the two words hearing loss and several threads were brought up. There isn't a lot of evidence yet that stem cell treatments are working for hearing loss. Stem cell therapy is still in its infancy as I believe you are well aware.

Nepsis is no more. You are correct.

Harry
09-25-2012, 12:32 AM
The proceedure was to see a Audiologist to see the response to hearing then, we went for an ABR to confirm results. At this point we see the ENT specialists who looks at all results to try and diagnose you. You will continue to see the ENT specialist to come to a conclusion. At this point you can do other tests but otherwise you are discharged and left with the audiologist and a teacher of the deaf. Its pretty rubbish as they probably can do more but money talks.

I would think 90% of the stem cell clinics online are fraudulent or do not know what they are doing. You have to research and research and look at real patient experience. Dont rush it. You probably seen the Chloe case at RNL bio. Be careful here, as this looks so real but the more you research the more it looks fraudulent.

If you here anything, let us know.

Thanks

chaisewilson
09-25-2012, 10:04 AM
Yes I have heard of the RNL Bio case... I would be hard to swallow if it turned out to be a fraudulent story made up. I believe her hearing restoration wasn't due to restored nerve damage, but rather to the stem cell treatment reducing her inflammation due to her auto immune disorder. Which isn't so hard to believe I suppose.

It is a wonderful story but doesn't bring much light to those of us with nerve damage due to noise or drug/ chemically induced hearing loss.

I will dig up some of the stories that caught my eye and post here...

Or rather should I start a new thread outside of the introduction section?

and thank you barbara, I didn't find the search function before hand. That will come in handy indeed!

And much agreed on the subject of ENT's. My whole experience has got me rethinking a profession in it. only about 20 or so ear disorders, they cost an arm and a leg, and in the end they just tell you " nothing we can do, wear ear plugs, sorry there is no cure"

I mean i suppose in the case of repeated infection and placing tubes.. ect they have there place.. but as far as treating the ear. Pshhh

Harry
09-25-2012, 10:46 AM
Its weird how the ENT operate. They have all the power to help more but give you limited information - maybe because of fuds or toooo busy. But i have washed my hands with the ENT professors as i am not getting any joy. To me, we are on our own to find a solution/cure.

There are other reports of semi cures regarding stem cells. Have you heard of Beike?? They have reports on couple of people having improvements. Again, i trust the info but they are small improvements. However, how many people have been there and had no improvements. Beike will not publish that.

You can put a new post up. There are other people on this forum who are interested in Hearing loss cures. So you may get more people replying. I am lookinng at stem cells early next year so will let you know on that. TC

chaisewilson
09-25-2012, 08:39 PM
I will look into that company... and I will start a thread in general discussion for the various related stories...

And if you do go ahead with the treatment I would love to keep up with your steps, both for information as well as to support!

and although a small improvement wouldn't mean much to a person born deaf. I believe a small improvement is all i need. My audiologist was very surprised that I even have tinnitus, due mostly to the fact that my hearing test had very good results. I tested within a normal rage. I did show a lack in my higher frequencies, but I wouldn't qualify for hearing aids or anything like that.

Her suggestion was simply that I had above average hearing before my little incident and the frequency hearing that I lost was mostly above the range they normally test for. A couple db improvement in my high frequencies, i believe would totally cure me of my ringing and sensitivity to sound!

Unfortunately, that kind of improvement would do little for someone hearing at say -40 db across the board. I was at -15 in some spots ( still normal range), and even tested 0 db hearing for my low frequencies.

Cynthia
09-29-2012, 09:16 AM
Hi - welcome to SCPs!

I am sorry to hear about your experience.

I completely agree with your findings about ENT's here in the US. Completely useless. That's why you see so many getting into plastic surgery. I had one i liked Dr. George Shambaugh in Illinois. He did his own research was extremely proactive in trying to find some resolution to hearing loss. A true leader a head of his time. Unfortunately he has passed but his research foundation may still be active.

I looked into and had conversations with a few clinics in Mexico about receiving treatment with no guarantee b/c they are not sure at this point. That option is always there.

Yes there are several scientists working on a stem cell cure none that i am aware of or have come close. Or at least want to share their information as of yet. I search the clinical trials websites from time to time to see if there are trials available. Stanford Burham has Stefan Heller researching. I know a clinic CellMed in I think Panama Dr, Neil Riordan runs it. He was treating one of his MS patients with hearing loss but no cure for the loss maybe a small improvement. Again it takes time. He did respond well to the treatment for MS and does not have any symptoms of MS. I believe with stem cells they go to where the body needs them first even if it's not the symptom that you are asking to be treated for. So it takes a few treatments before you will see results. That is what would make you a stem cell pioneer!

As far as tinnitus goes for me that is the least of my concerns even though i do have it. I understand the frustration you have with it. For tinnitus there is a lot of nutritional support to help. B vitamins and good fats may help reduce the noise. There are masking devices that make a sound so it masks what you hear in your head and may help you sleep. HLAA.org is the website for the hearing loss association of america. Lots of information there about coping with and new developments for tinnitus and hearing loss and local support groups.

Also, i caution you to be very careful of any medications that you take or are prescribed. Some are ototoxic which means they can destroy your hearing. Always tell the doctors you see that you don't want any ototoxic meds. Unless of course you are facing a life threatening situation. They are listed on the internet so you can find them. It's good information to know b/c when i tell the doctors that they get this confused look on their face about what i am telling them. So if you can name them it helps.

If i come across any new information this is the first place i would come to share with everyone.

And, lastly, yes always wear ear protection!!! All the rockers do on stage! it's a priceless investment get the best plugs money can buy.

chaisewilson
09-30-2012, 09:21 PM
Thank you Cynthia, that was a very informative post.

I do wear the ear plugs! ;) I have a cheap set of er-20s i picked up for about 20 dollars. I don't play as often as I used to because the Tinnitus just bothers my ears in general, but when I do I always wear them. They claim to give a 20 db reduction in sound which should be enough protection to prevent further damage. Or so my ENT says lol, but we have already had that conversation.

The plugs kind of suck the life out of playing live, but I'm not going to pass up any caution I can take as the idea of my tinnitus getting any worse just seems unbearable.

I'm sure your aware as well that the first FDA trial for treating hearing loss has begun. If not here is a quick link i just pulled from google.

http://www.multivu.com/m...stem-cells-hearing-loss

Also there is a bit of research going in in Australia I remember this link popping up some time ago concerning nasal stem cells working to restore hearing in rodents.

http://youtu.be/7VWecNTEdbw

And yes I have fathomed the idea of just going ahead with a clinic, in say Mexico or what have you, but yes, the amount of successful treatments is very limited. If i could find even one doctor to who has repeated success, just even a handful of times out of a hundred, I would begin finding the means to make it happen. That was information I was hoping to find as I continued to search the web( which is what lead me here!)

Even considering the minimal odds of success in treating tinnitus, I would almost consider doing it anyway, but borrowing money for such an out there experimental procedure would be difficult, as would fund raising with friends and family, as no one wants to throw money at a "cure" that most likely wouldn't even work.

Even so, If I could still find the right doctor with some experience in the matter, I would round up the money somehow and give it a go. My tinnitus bothers me that much.

yorkere
10-03-2012, 01:09 AM
chaisewilson:

Do a search on Soundcure Serenade...this device was researched and developed by University of California at Irvine researchers, who then spun the device manufacture and sales off to a separate entity...

I was one of the research subjects in the initial research that wound up creating this device...it effects Tinnitus by introducing external sound at a special lower frequency than the Tinnitus...it has been reported that ALL users of the device have stated the device has improved their Tinnitus...I think it may cost a couple or three thou..

I haven't looked further into it myself because my own condition has improved over the last several years to the point where I am mostly "habituated" to it; in many instances I have to focus hard to even detect it...

Robert

chaisewilson
10-04-2012, 09:14 AM
Thank you yourkere, searching now! So you would say then that while you were in the trials for the device that you tinnitus improved? How so? Did your volume decrease? Or perhaps did the device simply train the brain to not notice the sound as much? Like the tinnitus retraining therapy that some are trialing now?

yorkere
10-05-2012, 12:40 AM
chaisewilson:

My Tinnitus did not improve during the research...The testing consisted of placing earphones on, in a soundproof cubicle, while various tones were played into the phones...what they were looking for were those tones that would annihilate the Tinnitus...this was back in early 2009...

I volunteered for this when I read a short article in the ATA monthly journal by a guy who'd gone through this..he stated that when a certain tone was played into his ears, his Tinnitus merged with the tone, and then disappeared! I called the ATA and they kindly gave me his phone number; I called and talked with him about this, and he verified that it did happen and that the Tinnitus returned a day or so later......here's the slightly weird part, he told me that he wasn't going to continue on because he was so impressed with this that he was convinced that a cure for Tinnitus was eminent, and he was going to be permanently cured...

Any way, I volunteered...I'd already gone to the Tinnitus Treatment Center at UCI Irvine; it was headed up by Dr. Jeff Carroll (a Ph.D, not M.D.). The analysis and treatment was ~$600, not covered by my insurance...when I mentioned that I was going to participate in the study, Dr. Carroll revealed that the research was based on his discovery that certain tones could obliterate Tinnitus, temporarily...

Anyway, I went there for ~6 weeks...now here's the strange part of this:

TWICE, when I'd driven to Irvine in the late morning and arrived, when I was walking into the building where the tests were to be done, my Tinnitus had VANISHED when I walked into the room to take the testing! Each time this occurred, we had to cancel me out because there was nothing to test! And each time when I approached my car in the lot outside, my Tinnitus re-appeared!

It was as if I was possessed by a demon, and it knew I was after it...!

However, near the end of my tests, during the last test, a tone was played, and almost instantaneously that tone vanished, but the Tinnitus did not...when I asked the tester whether she'd stopped, the answer was NO..So I tried to concentrate on finding that tone and after a few seconds I could locate/hear it...the tester then stated that"now we need to find that signal which ends the Tinnitus".

But my test sequence was up after that, and I was told there would be no more sessions...this whole thing was strange to me, especially when I was told that my participation was ended...but my experience with this tells me that these people are really on to something quite powerful...

At any rate, my Tinnitus does not seem to bother me very much at all, it seems to just wax and wane...it never seems to be very loud, and I think I may be slowly getting rid of it.

Anyway, Jeff Carroll is now the CEO I think, of SoundCure as well as a few of the research group that was doing the testing...I may decide to try a test run of the device; there are several sources of the Serenade device here in Southern California at this time...

I would urge you to give this a try, dude, but be prepared, it's not cheap, and insurance will not pay!

Robert

chaisewilson
10-05-2012, 09:23 AM
Thank You again yorkere,

That is a very strange tail, and how frustrating it must have been for the tinnitus that drives you mad every day, to suddenly vanish the one time you WANT TO HEAR IT.

I will look up the company, however based on the study description you just gave to me, I could throw on my recording headphones we use in the studio and fire up a tone generator that comes with pro tools. I could then try to match the sound of my tinnitus and see if this method works. If my tinnitus vanishes once I hit a specific pitch, then I would save that tone and listen to it multiple times a week and see if the tinnitus goes away.

Unless I'm not understanding the magical ingredient to this method of treatment... id say I probably could try from home. As I said though I will check them out and see what they are offering.