Denver Man Gets Gene Therapy to Restore Hearing

[jeff W]

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.
.

I see this stuff really interests you, cognitive neuroscience theorises much of this as central in origin, brain this & brain that......but what if there is more going on in the end organ itself, perhaps the ear is more intelligent & dynamic then it gets credit for. Is there modulation of action potentials "before" it even gets to the brain. Do have a listen if you have time https://neuroscience.stanford.edu/news/hearing-tony-ricci

 

[Foncky]

You're quite off indeed. Think about phantom limb pain.

 

[GregCA]

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.

The thing is, if you lose a limb, you may still feel pain from that phantom limb. It's a well documented phenomenon.

 

[bill 112]

The thing is, if you lose a limb, you may still feel pain from that phantom limb. It's a well documented phenomenon.

I thought of that also but the way I saw it was that phantom limb pain is indeed real but it isn't necessarily a guaranteed outcome from an amputation.Some people experience it any many others don't so of course it's just a gamble,if your willing to take that gamble is another thing altogether.Personally I don't know if it's worth it or not.

 

[Cal18]

@bill 112 In this thread you mentioned that your T was triggered by even the sound of your own breathing. It reminded me of an article I read. Not implying by any means that you have anorexia. The article mentions that loss of fat surrounding the eustachian can cause many of the symptoms you have.

...a rare hyperperception of an abnormally intense hearing of one's own voice and respiratory sounds. You can read the whole article here: http://www.mdedge.com/currentpsychi...ognizing-autophonia-patients-anorexia-nervosa

 

[jeff W]

@bill 112 In this thread you mentioned that your T was triggered by even the sound of your own breathing. It reminded me of an article I read. Not implying by any means that you have anorexia. The article mentions that loss of fat surrounding the eustachian can cause many of the symptoms you have.

...a rare hyperperception of an abnormally intense hearing of one's own voice and respiratory sounds. You can read the whole article here: http://www.mdedge.com/currentpsychi...ognizing-autophonia-patients-anorexia-nervosa

That is absolutely fascinating.

 

[Stakovic]

 

[GregCA]

What happened to this man?

 

[RB2014]

As far as I have read he didn't see any improvement with the procedure and just went back to his normal life.

 

[bill 112]

Nothing,he seen no improvement after the trial.

Admittedly it was only to test tolerance so the dose was extremely low,maybe more is needed etc but overall he saw no improvement.

 

[Papipo]

Hi all,

I have fund this forum, and it seems the best place to know about the CGF166 trial results, right?

Gonna just subscribe to the thread

Thanks!

 

[Vinnitus]

A small update from october 2016. This presentation is about what GenVec is currently busy with. They want to use their Adenoverse platform to offer various regenerative therapeutics. CFG166 is touched on briefly around the 7:30 mark.

 

[dan26]

its all scientific stuff and it does sound pretty good esp for people who suffer from chronic tinnitus and imbalance for the past 35 years. i wish them good luck.

 

[jeff W]

As far as I have read he didn't see any improvement with the procedure and just went back to his normal life.

Thats not what I heard. It is my understanding that he was tested objectively and shown to have substantially improved balance. Restoration of lost balance function through cellular repair is impossible, so it was the clearly the agent affecting the ear. We wont know until the paper is released what dosage Gerk got. He may have got a very low dosage that affects vestibular hair cells much more than cochlear ones.

 

[jeff W]

Here is a small update http://www.hearinglossjournal.com/

 

[jeff W]

Also, somebody is trying to buy Genvec outright, they are offering 7 dollars a share and many are not pleased with the offer. http://www.prnewswire.com/news-rele...leading-gene-delivery-platform-300395556.html

 

[Reinier]

and many are not pleased with the offer.

Do you know why?
Could the CFG166 project benefit, or is that for Novartis to decide?
I haven't got a clue about different processes in companies like that.

But I appreciated the positive news update about CFG166.
The results so far are promising. According Dr. Lawrence Lustig. That made my day.

 

[Rubenslash]

Do you know why?
Could the CFG166 project benefit, or is that for Novartis to decide?
I haven't got a clue about different processes in companies like that.

But I appreciated the positive news update about CFG166.
The results so far are promising. According Dr. Lawrence Lustig. That made my day.

Of course the takeover could benefit this trial. GenVec might be acquired by a company worth more than 2 billion USD which means more funds and resources will be available to conduct research.

Results seems promising from the update, especially as they target people with severe hearing loss. I assume that these people must have hearing loss for decades so if they can partly restore those hair cells it shows the treatment might have a long window of opportunity.

 

[RB2014]

Thats not what I heard. It is my understanding that he was tested objectively and shown to have substantially improved balance. Restoration of lost balance function through cellular repair is impossible, so it was the clearly the agent affecting the ear. We wont know until the paper is released what dosage Gerk got. He may have got a very low dosage that affects vestibular hair cells much more than cochlear ones.

Where did you get this info from? I follow his twitter account and there is no mention of anything as related to the hearing loss trial.

I posted in the other thread, but this has to be good news for the stock. They were down to 30 cents a share and probably would have gone bk without someone buying them out. A bigger company will have the resources to more quickly evaluate and escalate their research. There is a race going on right now and it looks promising.

 

[jeff W]

I posted in the other thread, but this has to be good news for the stock. They were down to 30 cents a share and probably would have gone bk without someone buying them out. A bigger company will have the resources to more quickly evaluate and escalate their research. There is a race going on right now and it looks promising.

I am not sure I agree, we don't know what Intrexon are planning to do should they obtain ownership. Genvec did a 10/1 reverse split as NASDAQ was threatening to kick anyone trading below a dollar. The potential is enormous but this is not a phase 3 that could start luring large medical contracts to secure loans, its still early days. I (along with many others) don't like the idea of Genvec being taken over. They have offered 36 months 50 percent on current holders for anything that comes out of cgf166, but thats kind of cheeky as cgf166 probably wont even be in phase 2 by then so 50 percent of zero is nothing. Genvec have cancer gene therapy in the pipeline, but I dont know anything about that, perhaps thats what Intrexon is after.

 

[RB2014]

I am not sure I agree, we don't know what Intrexon are planning to do should they obtain ownership. Genvec did a 10/1 reverse split as NASDAQ was threatening to kick anyone trading below a dollar. The potential is enormous but this is not a phase 3 that could start luring large medical contracts to secure loans, its still early days. I (along with many others) don't like the idea of Genvec being taken over. They have offered 36 months 50 percent on current holders for anything that comes out of cgf166, but thats kind of cheeky as cgf166 probably wont even be in phase 2 by then so 50 percent of zero is nothing. Genvec have cancer gene therapy in the pipeline, but I dont know anything about that, perhaps thats what Intrexon is after.

Good points. Yes, they mention the cancer gene therapy in the article and that does seem like what they are after. Agreed on the cgf166. No one will see any money there. I guess this could be bad for cgf166, but hopefully they see some potential and they are able to do something with it.
The article you posted in the hearing loss journal is I think the first admittance that some people regained some hearing. I still can't believe that the statement has gotton almost no press. You would think that more people would care.

 

[Juan]

Ended up reading this website a bit by chance, in case someone is interested in enrolling:

http://entcolumbia.org/research/cli...-cgf166-patients-severe-profound-hearing-loss

http://entcolumbia.org/world-s-first-gene-therapy-trial-hearing-loss

 

[jacob21]

This give some hope :

The procedure involves going down the ear canal and detaching the tympanic membrane (ear drum) to reach the cochlea. A laser is used to create a hole in the cochlea to deliver the CGF166. Remarkably, it only takes 30 minutes and the patient is sent home the same day.

The results so far are promising. "There have been a couple patients with hearing improvement, so we are definitely encouraged."

So it s mean their drug work somehow ...

 

[Reinier]

Is a couple of patients two patients?
Also what is this improvement? Is it a better audiogram or is it being able to understand people better? Or even here new frequencies?
But I do think it sounds promising. The news could also have been different.
If this drug does work (or work partially) it means new hair cells do connect to nerves. Howe else can you notice improvement.
We have to be patient.

 

[RB2014]

So is this the phase 3 trial of cgf166 trials?
Reinier, there isnt much info out there, but yes I think it was one or two people that showed improvement and another that got worst.

 

[Samir]

The procedure involves going down the ear canal and detaching the tympanic membrane (ear drum) to reach the cochlea. A laser is used to create a hole in the cochlea to deliver the CGF166.

You sure they create a hole in the cochlea? That seems wasteful.

 

[Aaron123]

Is a couple of patients two patients?
Also what is this improvement? Is it a better audiogram or is it being able to understand people better? Or even here new frequencies?

This is unknown. Lustig made the comments in an interview.

So is this the phase 3 trial of cgf166 trials?

No. This is still the Phase 1/2 trial.

You sure they create a hole in the cochlea? That seems wasteful.

They use a laser to do a Stapedotomy. The stapes is attached to the oval window so that is presumably the entry point.

 

[Cam Cam]

This is unknown. Lustig made the comments in an interview.



No. This is still the Phase 1/2 trial.



They use a laser to do a Stapedotomy. The stapes is attached to the oval window so that is presumably the entry point.

When they say phase 1/2 trial do they mean they're in phase 1 AND 2 or Phase 1 OF 2?

 

[Samir]

They use a laser to do a Stapedotomy. The stapes is attached to the oval window so that is presumably the entry point.

Why would they go for the oval window? Auris, Decibel, Frequency, they are all going for the round window.

 

[DoNotGoGentle]

I called the lady working on the study. They are starting the phase now and still asking for people. I asked her when will they know the results and she said by the end of the year. Thanked her for trying to fix this problem. Wished them good luck!!!