Denver Man Gets Gene Therapy to Restore Hearing

[tinnitube]

@Beste I know that in my experience there are really damaging disease infections bacteria and fungus that are truely so ototoxic that they F*** your auditory and balance systems beyond what, in my opinion, even a lifetime of benzo activity starting and stopped would do...

hello there Ian , well .. I got T because of damn virus inside my vestibular system also same as you , I've got Vestibular neuritis . I still remember the 6th day when I was dizzy and suddenly I felt like something inside my ear move and then ... "iiiiiiiiiiiiiiiiiiiiii"

 

[Ian Mac]

hello there Ian , well .. I got T because of damn virus inside my vestibular system also same as you , I've got Vestibular neuritis . I still remember the 6th day when I was dizzy and suddenly I felt like something inside my ear move and then ... "iiiiiiiiiiiiiiiiiiiiii"

Oh wow, yes it can be truely horrible. Did your vertigo go away? Mine did luckily! But now I hear a what sounds like keys jingling in my right ear. I wear s hearing aid masker and it plays white noise and it masks the "jingling" noise! Now I have ringing in both ears hissing in both ears but louder on the right and I also hear keys jingling quietly in my right ear. Drives me nuts but I can sleep again with the hearing aid. Stay strong and let's keep in touch, our cure for tinnitus might be different than the masses since we had the *crap virus! Have you been to an otologist? What did they say?

 

[tinnitube]

... yes it went away but lasted like 6 months, well very dizzy, true vertigo only 2 times. I saw a neurotologist he said vestibular neuritis and if ive got T, its called labertynthitis. he said to me "the dizzyness will last 6 to 8 months" prescribe me serc for 3 months minimum after the acute phase. Itt left my ringing in my left ear not soooo bad but enough to drive me crazy sometimes. I sometimes feel a little desequilibrium and have to make compensation excersise.here in chile we have a lot of earthquakes, any time the earth moves I say "no please god no the vertigo again!!" the worst episode of my life. any way the dizzyness when I was at full its worst than T but then T takes over. how do you feel right now? for me it was 1 year 2 months ago.

 

[tinnitube]

ahhh also my audigram shows good hearing on right ear and in left ear the 6khz and 8khz are in -18dB and all the rest normal. i started steroids two days after T im shure if ive started steroids the same day of the dizzyness would have save completely my left ear. do you have any idea of what kind of evil virus is this thing caused from?? any idea ??

 

[Artemis2K]

I've been through three years of torment. I made the typical millenial mistake of having loud music when I was a teenager, but I have also was foolish enough to marathon shows at loud volumes without realizing it. Because of my stupidity, I now have really bad tinnitus, possible slight balance issues due to my left ear feeling lighter, a left ear hearing worse than other, and inability to appreciate music anymore. It is scary that I am going through so much despair despite having hearing in mid-normal range.

My life has been on pause a lot because of this. I am now questioning if I would be able to do any of the careers I wanted to do. Social life has also been harder since my primary interest has been video games with a hatred of sports. I am trying my best, and will likely get a career in manufacturing things with profitable hobbies such as resale on the side.

However, the treatments would be nice to be in market already. If it has worked on mice, and seemingly humans, why do people expect it will be a long time (10 years) from now before that happens? Will there ever be a focus on people with slight-to-mild hearing loss? I'm no biologist, but I would think that if there are some positive results on the people who have it much worse, even if the progress was only minor, the people with slight-to-mild would still benefit significantly.

I wish the scientists around this would be more open. It seems to me that atoh-1, nt-3, and possibly fgf20 are the key ingredients to repair hearing damage.

Are there any good updates that I might have missed outside of google search?

 

[Foncky]

How do you know it seemingly worked on humans ?

A candidate of the GenVec - CGF166 clinical trial named Jeff Bricker said this on FB, on June 22, 2016 :
"Tuesday will mark the final step in a long journey to regain some hearing again. The Gene Therapy Trial didn't work on me and in the case of a few other Lab Rats, like myself, actually created more hearing loss. I will get a Cochlear Implant on Tuesday that hopefully will restore a portion of my hearing. Can't wait to become Bionic !"

Nick Pyzik (a TT member) interviewed him. You can read more in the "Inner ear hair cells regeneration" thread.

I guess it's not clear : can it work ? how should it be done ? So we have to wait a little more.

 

[Mricha37]

Im pretty sure there are a few subjects that regained some hearing. And from my understanding they were very low doses...ya know, dont want to go 100% in the first round. Lol

 

[Ian Mac]

... yes it went away but lasted like 6 months, well very dizzy, true vertigo only 2 times. I saw a neurotologist he said vestibular neuritis and if ive got T, its called labertynthitis. he said to me "the dizzyness will last 6 to 8 months" prescribe me serc for 3 months minimum after the acute phase. Itt left my ringing in my left ear not soooo bad but enough to drive me crazy sometimes. I sometimes feel a little desequilibrium and have to make compensation excersise.here in chile we have a lot of earthquakes, any time the earth moves I say "no please god no the vertigo again!!" the worst episode of my life. any way the dizzyness when I was at full its worst than T but then T takes over. how do you feel right now? for me it was 1 year 2 months ago.

Vertigo lasted 2 months, just was given meclizine for the nausea. Yes vertigo is truely a life ruiner, then one day I woke up and the vertigo completely went away and I knew it was gone for good, now I just hear "keys jingling in my right ear and a bird with a hissing snake" and then normal ringing in both ears it bothers me all the time, I wear a hearing aid to mask the bird and keys jingling sound, it works incredibly well and I can't sleep without it. Got my third DUI so I'll be going to jail for 6 months, can you imagine how hellish that will be for me? Any hoot I now have also been diagnosed with cochlear hydrops (labrythitis/vestibular nueritis can actually cause cochlear hydrops) which can turn into minieres disease if I don't take the medications. You should see an Otologist they are Ear Nuerologist and then can perform tests to tell you what happened and to RULE OUT cochlear hydrops. I guess my left ear is functioning at 45% of my right whatever that means and my hearing is normal but my ECOG test shows increased pressure inside the endolymph of both ears which is probably my causing my fluctuating tinnitus sounds..

 

[RB2014]

Im pretty sure there are a few subjects that regained some hearing. And from my understanding they were very low doses...ya know, dont want to go 100% in the first round. Lol

They did vary the dosage for participants in the first round. More didnt necessarily mean better hearing in the animal subjects in fact in some cases it didnt do as well as the lower doses. We really don't know what the dosage does at this point, but the people at Novartis probably do.

There are at least 2 people that we think did improve their hearing and there are others that lost some of it. Not sure how any of that correlates to the dosage or the type of hearing loss they had.

There is no information available to the public at this point to help us understand what happened and why. I'm hoping to see the results at some point in the future. It would be great if they were able to confirm improved hearing for a certain dosage or type of hearing loss.

Either way, this was more of a test than anything else to see if would even work. I don't think there will be a phase 2 for this trial. Possibly another phase 1 based on a different formula that they may have been rumored to be working on.

 

[Reinier]

Possibly another phase 1 based on a different formula that they may have been rumored to be working on.

Now my curiosity is aroused (-:
That is something I would expect. They will not sit on their hands while the trial is taking place.
Surely?

 

[ruben ruiz]

Implants are very iffy. I cant imagine such a procedure only to end up with tinnitus. Im sorry. Love.

 

[Artemis2K]

I think this is very close. I'm no biologist, but I think that what would eventually happen is that there would be three steps of treatment. First one to repair the structural damages/degeneration with genes such as nt-3, second to transform the supporting cells into hair cells with atoh1, and third to act as an enhancer such as with fgf20 to further grow the hair cells. For all I know the atoh1 gene therapy hair cells could be incomplete.

I think that focusing primarily on the deaf may be a mistake. So, if they work out how to insert the viruses without further danger, they should consider working on people with better hearing because they would have less degeneration, which I believe would mean more success. Eventually those that are worse off could benefit from the breakthroughs.

What I hope is that hearing loss can eventually be reversed and there are enough treatments on the market for it to be more acceptable for government to implement a law where any headsets or earpieces above 80 dB require a prescription. I don't think this would do much harm on the market since such devices aren't indestructible.

 

[DefNFlaky]

Im pretty sure there are a few subjects that regained some hearing. And from my understanding they were very low doses...ya know, dont want to go 100% in the first round. Lol

Bah, let's get dangerous and reap the benefits. Those who dares, wins.

 

[RB2014]

I think this is very close. I'm no biolooo gist, but I think that what would eventually happen is that there would be three steps of treatment. First one to repair the structural damages/degeneration with genes such as nt-3, second to transform the supporting cells into hair cells with atoh1, and third to act as an enhancer such as with fgf20 to further grow the hair cells. For all I know the atoh1 gene therapy hair cells could be incomplete.

I think that focusing primarily on the deaf may be a mistake. So, if they work out how to insert the viruses without further danger, they should consider working on people with better hearing because they would have less degeneration, which I believe would mean more success. Eventually those that are worse off could benefit from the breakthroughs.

What I hope is that hearing loss can eventually be reversed and there are enough treatments on the market for it to be more acceptable for government to implement a law where any headsets or earpieces above 80 dB require a prescription. I don't think this would do much harm on the market since such devices aren't indestructible.

I doubt they are going to experiment on people with better hearing anytime soon. Too many risks right now and the participants risk many unknowns in this gene therapy including total deafness.

 

[jeff W]

I doubt they are going to experiment on people with better hearing anytime soon. Too many risks right now and the participants risk many unknowns in this gene therapy including total deafness.

Exclusions clauses like what is used for wisdom tooth surgery can be used to mitigate liability. It should be a shared decision between both patient (an informed patient) and the clinician. Risk is risk. I personally chose not to take the risk for jaw surgery as a child, but if a chance came for me to repair my ear, I would view such risks differently, very differently.

 

[Reinier]

I would view such risks differently, very differently.

I assume that you mean when it goes wrong it can go wrong horribly?
Or do you mean that your hearing condition is such that you are inclined to take more risk?

 

[jeff W]

I assume that you mean when it goes wrong it can go wrong horribly?
Or do you mean that your hearing condition is such that you are inclined to take more risk?

I mean, I am inclined to take more risk. There exists a substantial amount of folk within the patient body that share my opinion. If the technology is there to then use it. If its risky, explain that to patients beforehand, even if this takes a considerable amount of time. I am sure many of the people that have commit su1c1de would agree, if they were still alive to speak.

 

[bill 112]

I guess it all comes down to severity,if I still had my T between 2011-2014 I personally wouldn't have risked any procedure no matter the outcome.

In fact,I was more than happy to live the rest of my life the way I was even after the higher T and moderate H that came in 2014.Even then I was for the most part a happy guy that could function and live a somewhat normal life,I had fully habituated to my T so much so that I thought about it maybe once a month usually when I was in bed with nothing else to think about.My T was mild and the H had gotton a lot better but after my unexpected severe worsening in 2016 that all changed.

I now have quite loud reactive T so reactive in fact that it goes up and down to the sound of my own breathing and for the H?Dont even get me started on how bad that is.
Right now I'd be willing to try anything no matter the outcome,regardless of the risks involved it just simply wouldn't bother me now.The way I see it is I couldn't possibly get any worse from how I am right now so even completely losing my hearing seems like a weird bonus because it'll mean no more H.And if it killed me?Then so be it.

What I'm saying is I'm willing to be Guinea pig as long as I believe the treatment they're administering has the slightest chance of working,otherwise I'm not interested.

 

[RB2014]

I guess it all comes down to severity,if I still had my T between 2011-2014 I personally wouldn't have risked any procedure no matter the outcome.

In fact,I was more than happy to live the rest of my life the way I was even after the higher T and moderate H that came in 2014.Even then I was for the most part a happy guy that could function and live a somewhat normal life,I had fully habituated to my T so much so that I thought about it maybe once a month usually when I was in bed with nothing else to think about.My T was mild and the H had gotton a lot better but after my unexpected severe worsening in 2016 that all changed.

I now have quite loud reactive T so reactive in fact that it goes up and down to the sound of my own breathing and for the H?Dont even get me started on how bad that is.
Right now I'd be willing to try anything no matter the outcome,regardless of the risks involved it just simply wouldn't bother me now.The way I see it is I couldn't possibly get any worse from how I am right now so even completely losing my hearing seems like a weird bonus because it'll mean no more H.And if it killed me?Then so be it.

What I'm saying is I'm willing to be Guinea pig as long as I believe the treatment they're administering has the slightest chance of working,otherwise I'm not interested.

Really sorry to hear about that Bill. Really there just isnt anything out there right now that can help with H, or even T, but I understand about the H. I remember how painful H was so I get what you are saying. At this point noise cancelling headphones might be the way to go. At least it will block all sound. I have approx 20 percent of my hearing left and let me tell you its no picnic trying to live as a normal person. I am just like you, at least if it all went away then at least all the pressure goes away and I just accept that I can't function anymore as a normal person.

 

[Foncky]

[...] even completely losing my hearing seems like a weird bonus because it'll mean no more H [...]

Are we sure about that ? Not even. A sound you can't hear might still be able to hurt the few cells left in there...

Even so, loosing all hearing would not be the worst thing we can imagine : the worst would be more hearing loss, more tinnitus, more H... I believe there's always room in the cochlea for more pain unfortunately.

 

[Christian78]

I guess it all comes down to severity,if I still had my T between 2011-2014 I personally wouldn't have risked any procedure no matter the outcome.

In fact,I was more than happy to live the rest of my life the way I was even after the higher T and moderate H that came in 2014.Even then I was for the most part a happy guy that could function and live a somewhat normal life,I had fully habituated to my T so much so that I thought about it maybe once a month usually when I was in bed with nothing else to think about.My T was mild and the H had gotton a lot better but after my unexpected severe worsening in 2016 that all changed.

I now have quite loud reactive T so reactive in fact that it goes up and down to the sound of my own breathing and for the H?Dont even get me started on how bad that is.
Right now I'd be willing to try anything no matter the outcome,regardless of the risks involved it just simply wouldn't bother me now.The way I see it is I couldn't possibly get any worse from how I am right now so even completely losing my hearing seems like a weird bonus because it'll mean no more H.And if it killed me?Then so be it.

What I'm saying is I'm willing to be Guinea pig as long as I believe the treatment they're administering has the slightest chance of working,otherwise I'm not interested.

I used retigabine and I was 4 months tinnitus free totally... and I know how it feels to have tinnitus to stop, but then again every day one is scared it will come back...

I think tinnitus definitely causes post traumatic stress disorder, as even if it stops one is scared it will come back ... of course this is for those 3% people who really suffer... and also some who have severe tinnitus

 

[Christian78]

Exclusions clauses like what is used for wisdom tooth surgery can be used to mitigate liability. It should be a shared decision between both patient (an informed patient) and the clinician. Risk is risk. I personally chose not to take the risk for jaw surgery as a child, but if a chance came for me to repair my ear, I would view such risks differently, very differently.

my sis removed her wisdom tooth and ended her tinnitus... but well we are not all the same

 

[Christian78]

I doubt they are going to experiment on people with better hearing anytime soon. Too many risks right now and the participants risk many unknowns in this gene therapy including total deafness.

Well there is huge number of people in Nigeria who has tinnitus, rich companies will for little money pay people to enroll in studies

 

[bill 112]

Really sorry to hear about that Bill. Really there just isnt anything out there right now that can help with H, or even T, but I understand about the H. I remember how painful H was so I get what you are saying. At this point noise cancelling headphones might be the way to go. At least it will block all sound. I have approx 20 percent of my hearing left and let me tell you its no picnic trying to live as a normal person. I am just like you, at least if it all went away then at least all the pressure goes away and I just accept that I can't function anymore as a normal person.

I know losing your hearing completely or nearly all of it for that matter must be an awful thing so I do completely sympathise with you and anyone else in the same situation for that matter,I would never under estimate the suffer wring someone endures unless I've been there myself so of course it's very easy for me to say losing my hearing would be a bonus,that may very well not be the case.

It's just the unbelieveable relentless sensitivity and pain I suffer day in and day out from the most mundane of sounds is not humanly bareable,the sad thing is ear plugs and muffs do little to help me as even the sound of someone talking whilst wearing them is still unbearablely painful so that gives you an idea of just how sensitive my ears are.And it's not that the ear muffs and plugs I have are crappy,I have a pair of Alpine Musicians earplugs and the best pair of Peltor Earmuffs you can buy and still it doesn't help,hence why deafness seems like a welcome break to me.

 

[bill 112]

Are we sure about that ? Not even. A sound you can't hear might still be able to hurt the few cells left in there...

Even so, loosing all hearing would not be the worst thing we can imagine : the worst would be more hearing loss, more tinnitus, more H... I believe there's always room in the cochlea for more pain unfortunately.

True but if I lost my hearing I would just have them cut the nerve and be done with it altogether,yeah I'll be deaf and still possibly have T but at least the H will be gone and that's all I wish for.

The funny thing is and I'm sure many of us here will agree is that it's not a full cure that we're after,just a great improvement that we can start living somewhat normal lives again,I just hope that's not too much to ask.

 

[bill 112]

I used retigabine and I was 4 months tinnitus free totally... and I know how it feels to have tinnitus to stop, but then again every day one is scared it will come back...

I think tinnitus definitely causes post traumatic stress disorder, as even if it stops one is scared it will come back ... of course this is for those 3% people who really suffer... and also some who have severe tinnitus

Completely agree with that comment,even if I was cured tomorrow and I can still see myself scared to death of bringing it back again,even now I'm currently going through a phase of nightmares involving sound.Almost everynight I have a nightmare involving me being exposed to noise and it damaging my ears which usually ends with me waking up in a pool of sweat and hyper-ventillating for about 30 minutes so there's no doubt in my mind that I'm currently suffering with some form of PTSD.Even when I hear a sound similar to what caused my H my brain gets a flashback to that awful day and again I begin hyper-ventillating and grow weak.Safe to say this shit has rightfully fucked me up.

 

[GregCA]

True but if I lost my hearing I would just have them cut the nerve and be done with it altogether,yeah I'll be deaf and still possibly have T but at least the H will be gone and that's all I wish for.

Are you sure H would be gone in that scenario? Many people thought T would be gone, and it turns out it's not always the case. How about for H?

 

[Kane Moffat]

@bill 112 sounds tough right now mate. Bad H is absolutely devastating I feel for you man. Any thoughts on stem cell therapy?

 

[RB2014]

Completely agree with that comment,even if I was cured tomorrow and I can still see myself scared to death of bringing it back again,even now I'm currently going through a phase of nightmares involving sound.Almost everynight I have a nightmare involving me being exposed to noise and it damaging my ears which usually ends with me waking up in a pool of sweat and hyper-ventillating for about 30 minutes so there's no doubt in my mind that I'm currently suffering with some form of PTSD.Even when I hear a sound similar to what caused my H my brain gets a flashback to that awful day and again I begin hyper-ventillating and grow weak.Safe to say this shit has rightfully fucked me up.

Bill, I wonder if that fact that the H is causing you so much anxiety is what is making it worst. Everyone is different buy my daughter and I both got H from lots and lots of anxiety that we put upon ourselves. With the constant H it only feeds the anxiety which just makes H worst. I posted a while back that H is a basic instinct since our senses get heightened when we sense danger. You sense the danger of H which is just making the H worst. Your body will tune up the volume so you can hear the danger which is what H is in some cases. Here though it only makes the H worst which causes you more pain.
I hate to say it but clonazepamn might work for you. It will totally make you not care about the H which will stop the anxiety which might make the H much less painful. At this point its worth a try if you are in such bad shape.
Once I calmed myself down from everything that was bothering me the H slowly went away. It took 3 to 4 months, but it eventually went completely away. Again everyone is different but it is worth a shot. My daughter still has it but it is at a much lower volume now that she has been on anti-depressants. She still has anxiety, but I am hopeful once it is gone all the way the H will go away too just like it did with me.

 

[bill 112]

Are you sure H would be gone in that scenario? Many people thought T would be gone, and it turns out it's not always the case. How about for H?

Well Hyperacusis as we all know is an extreme sensitivity to sound,no sound equals no H in my mind.H with pain is called Noxacusis and again depriving the brain of sound equals no H but I don't know what that means for pain however.

For all I know cutting the nerve may be all dandy for the sensitivity but the pain might persist regardless but I have good reason to believe this may not be the case.I've read a lot of people's experiences online and come to the conclusion that cutting the nerves would result in no more pain and no more H and here's why.

I read an account from a young man who fell off of his bicycle smashing his skull against the ground,believe it or not this impact actually partially severed his auditory nerve in his left ear leaving him nearly deaf on one side.He reported pain from sound after the accident and chronic fullness in his left ear.During surgery his auditory nerve couldn't be saved and was thus completely severed to avoid any complications.After the surgery the pain and sensitivity was completely gone but tinnitus remained for nearly 9 months before going away(well for some)

So this got me thinking,if the pain fibres are in the auditory nerve then severing them would stop their communication with the brain and thus stop the pain signal from being delivered.In theory it sounds plausible,I mean if you have a nail going through your finger and that pain signal is being delivered to your brain then removing that finger means the nerves responsible for that pain signal can no longer communicate.I'm by no means qualified to make these claims as my knowledge on things like this are basic to say the least but it's just a thought and theory I've been thinking about.

Funnily enough there's even more evidence to back this up here on TT,there's a post here somewhere about a woman who was deaf who received a cochlear implant and actually developed noxacusis as a result to some degree.When the implant was off there was no pain but when it was activated she experienced pain from sound,the nerve fibres are being stimulated and because they're damaged a pain signal is being sent to the brain as a result.Stop the signal stop the pain that's how I look at it.I could be waaaaaay off here but just something that's crossed my mind.