Denver Man Gets Gene Therapy to Restore Hearing

[RB2014]

I want to believe we will have something soon and I agree there has been a lot of new information discovered the past 5 years, but I also look back to a year ago when Novartis was on Fox news and I see where we are now. I really can't say that it seems that we have progressed that much in a year or at least it doesnt seem like it. I do agree as time goes on we will make advancements faster and faster, but I think we are in for a slow start here. I'm not sure where we will be in 10 years but I'm thinking we will at least have some clinical trials that are more promising than what we have now that I might be able to sign up for by then

 

[Reinier]

If we were to build a computer that is as complex as the brain it would be the size of a city and consume the power output of a nuclear power plant. That's why we haven't had that breakthrough yet! But we will! We will...

Thanks for the response.
People are actually planning on building a computer with the capacity of the human brain. I watched this on a program about the brain on the BBC. An enormous task, but according to people that work on this project, feasible with the ever increasing computer power. A so called mammoth task. A question asked in this program was "can this brain become concious".
http://news.stanford.edu/features/2015/brains/index.html
And yet, we can not repair damage in the cochlea or give people with tinnitus and hyperacusis relief.

"If we were to build a computer that is as complex as the brain it would be the size of a city and consume the power output of a nuclear power plant. That's why we haven't had that breakthrough yet! But we will! We will"
I agree. We will (-; Perhaps sooner than we realise.

Quoute from: http://news.stanford.edu/features/2015/brains/digitize-the-circuits.html
"Neurogrid is the first system to simulate a million neurons connected by billions of synapses in real time," Boahen said. "It does this using about three watts of power. That's orders of magnitude more efficient than a supercomputer, which normally is used to do these kinds of simulations and uses megawatts of power."
End quote.

Partly my post was because of a frustrated tinnitus and hyperacusis day. After reading so many documents and reports on the internet I understand the complexity of the human body. In particular the hearing and brain is difficult to change/repair.
But we have been on the moon many years ago and are planning trips to Mars. I think if you take a closer look at what is involved in that you will be amazed too.

This computer power hopefully will help scientists even more in the near future. I think if it wasn't for computers and clever software we wouldn't have a change at all, solving hearing damage.

There is no way of seeing tinnitus.

What about MRI?

 

[Reinier]

look back to a year ago when Novartis was on Fox news and I see where we are now. I really can't say that it seems that we have progressed that much in a year or at least it doesnt seem like it. I do agree as time goes on we will make advancements faster and faster, but I think we are in for a slow start here.

Perhaps you could be correct.
But also look at how Stanford's initiative to cure hearing loss project is progressing. Slowly but surely. It is understandable that we are focused on what Novartis and Genvec are doing. At least I am. The first ever clinical trial regenerating cells in the cochlea!
"Heavy sigh"....... Perhaps I need to stop reading documents regarding hearing loss for a while. It has taken over my life.

 

[Silvio Sabo]

What about MRI?

As far as I know there really is no conclusive way to determine if someone has tinnitus or not just by putting them in an MRI machine. And there sure is no way of objectivly determining the severity of tinnitus. We can maybe say that someone has increased activity in a part of the brain and suspect that "ok, it's likely that this person has tinnitus", but we can't tell how loud it is. You have to remember that 90% of all people hear tinnitus in a sound proof room. It's just not as loud as for any of us.

They are acctually working on diagnostic tools to objectivly measure tinnitus. I think this should be the first priority because once we have that we can throw anything but the kitchen sink at it and acctually measure how it effects tinnitus. Just like when you test a cancer drug you do scans and can see if the tumor is shrinking.

The main problem with tinnitus is that it's not really a condition or a disease. It's just a symptom and it can be caused by a number of issues. We talk about regrowing hair cells and nerve fibers and so on. But the thing is, you can have tinnitus and where there is nothing wrong with your hair cells!

Imagine trying to find a treatment for nausea. We all know that nausea can be caused by pretty much anything from anxiety to cancer. This is basically what people are doing when they are talking about curing tinnitus. There will never be a single one cure for tinnitus. What we will have is a cure for sensoneural hearing loss, microvascular compression and so on and so on...

 

[Reinier]

As far as I know there really is no conclusive way to determine if someone has tinnitus or not just by putting them in an MRI machine.

OK. I believe you. I have read so many things lately in a field I didn't know anything about 8 months ago. You try to be objective and methodical about what you read. But in the end I am a technician with zero experience in medical science. I approach this from a fault finding principle I have been doing all my life in electronics. Logic can be difficult to find in complex processes.

And there sure is no way of objectivly determining the severity of tinnitus

How about finding out what external sound level, masks your tinnitus. Is that not an objective way to determine how loud a tonal tinnitus is. The audiologist I went to see, to adjust the Neurostimulator I am using at the moment, did just that. Next time further in the therapy she will do this again to see if my tinnitus level has come down. But only I can tell here how much it bothers me. The amount of hindrance to me is more difficult to measure.

It's just a symptom and it can be caused by a number of issues. We talk about regrowing hair cells and nerve fibers and so on. But the thing is, you can have tinnitus and where there is nothing wrong with your hair cells!

Is it not the consensus at the moment that most tinnitus is because of hearing loss?
People with tinnitus can have "hidden hearing loss". Where connections have been lost due to noise. It is possible that in future with better diagnostic tools, it is concluded that almost all tinnitus and hyperacusis is caused by damage in the cochlea/nerve fibres due to noise or ototoxicity. And it would not surprise me, that in the future, loss of hair cells not detected before, shows up with the use of the better diagnostic tools. After all, when you read posts on this forum,most tinnitus and hyperacusis started after noise incidents. At least that is my impression.

There will never be a single one cure for tinnitus. What we will have is a cure for sensoneural hearing loss, microvascular compression and so on and so on...

I absolutely agree. I like this discussion. Thanks (-;

 

[Silvio Sabo]

How about finding out what external sound level, masks your tinnitus. Is that not an objective way to determine how loud a tonal tinnitus is. The audiologist I went to see, to adjust the Neurostimulator I am using at the moment, did just that. Next time further in the therapy she will do this again to see if my tinnitus level has come down. But only I can tell here how much it bothers me. The amount of hindrance to me is more difficult to measure.

What you are talking about is minimum masking level or MML. This is acctually being used. If you look at the reports from Auris Medical regarding AM-101 they talk aboout minimum masking levels. However for many of us this can vary from day to day. And tinnitus is really a very complex and subjective experience.

The annoyance depends on your mood, anxiety levels, depression...the list is pretty long. And it's not really an objective measurement. You are asking another person of what their perception of something is. And perception is a highly subjective measurement. We don't base the effectiveness of cancer medication for cancer patients based on "how do you feel today?".

Is it not the consensus at the moment that most tinnitus is because of hearing loss?

In most cases this is true but then you have people that have tinnitus due to microvascular compression, where the auditory nerve is damaged. There is nothing wrong with the hair cells in the cochlea in that case.

Then you have people developing tinnitus from high colesterol, tensing of the neck and facial muscles (somatic tinnitus), high blood pressure and so on. These people often have intermittent tinnitus, pulsitile tinnitus or clicking tinnitus (also called type writer tinnitus). None of those are due to damage of the auditory system.

People with tinnitus can have "hidden hearing loss". Where connections have been lost due to noise.

Correct! This is why many people with tinnitus have no issues with their hearing, at least not measurable by an audiogram. I myself am one of those.

It is possible that in future with better diagnostic tools, it is concluded that almost all tinnitus and hyperacusis is caused by damage in the cochlea/nerve fibres due to noise or ototoxicity. And it would not surprise me, that in the future, loss of hair cells not detected before, shows up with the use of the better diagnostic tools. After all, when you read posts on this forum,most tinnitus and hyperacusis started after noise incidents. At least that is my impression.

We all have damage. The only ones who don't are infants - and sometimes even that's not true (they've acctually found that damaging sound can reach a fetus in the voumb so I wouldn't recommend a pregnant woman to attend a rock concert f.i.)

Now, is that damage enough to cause tinnitus? Maybe! But you have to remember that there are lots of people that have severely damaged hearing but no tinnitus or hyperacusis. Why is that?! How come some people can go to rock concerts, fight in wars and have guns, bombs and granades going off next to them, aquire tons of damage and never ever get tinnitus or hyperacusis?! I don't think it's that simple.

 

[Reinier]

Simple it is definitely not )-;
Let us hope the Novartis gene therapy trial resumes A.S.A.P.
Also I do hope that in 2016 more trials will start.

Thanks for your thoughts.

 

[jeff W]

 

[seal]

@jeff W May I ask you Tinnitus unrelated question? How come you have a Stefan and Claudia Effenberg profile pic? Everytime I see it I wonder

 

[jeff W]

@jeff W May I ask you Tinnitus unrelated question? How come you have a Stefan and Claudia Effenberg profile pic? Everytime I see it I wonder

long story

 

[Reinier]

Thanks @jeff W . Interesting.

I only which that Moore's law also applies for knowledge in medical science. Every two years double the knowledge.
Perhaps Moore's law does apply and it is just an indication how huge the challenge is?

 

[tomytl]

Hair cell regeneration is a part of regenerative medicine. I think, this technology will enter the market with many other applications to cure or treat different conditions.
Regenerative Medicine is a new class and something it has to be developed for widely use. There must be many common procedures first, some standards, otherwise it will be to specific and to complicated to apply.
But defenitely, it will lead the way out of the age of a medicine we know today.
It's something to establish first widely before the masses can get access....

 

[Silvio Sabo]

Thanks @jeff W . Interesting.

I only which that Moore's law also applies for knowledge in medical science. Every two years double the knowledge.
Perhaps Moore's law does apply and it is just an indication how huge the challenge is?

If you look at the brain we have learned more about it in the last 5-10 years than in the whole history of the human race before that. Obama has put in $1 billion into the brain initiative that has the goal to map the whole human brain. Every single neuruon!

 

[Mithrandir]

Hair cell regeneration is a part of regenerative medicine. I think, this technology will enter the market with many other applications to cure or treat different conditions.
Regenerative Medicine is a new class and something it has to be developed for widely use. There must be many common procedures first, some standards, otherwise it will be to specific and to complicated to apply.
But defenitely, it will lead the way out of the age of a medicine we know today.
It's something to establish first widely before the masses can get access....

So for our generation of sufferers, we have to go in Asia try stem cells and hope that functions on our problems ?
'Cause stem cells for everybody which repairs hearing problems specifically will arrive in 20 years ?

 

[Reinier]

If you look at the brain we have learned more about it in the last 5-10 years than in the whole history of the human race before that. Obama has put in $1 billion into the brain initiative that has the goal to map the whole human brain. Every single neuruon!

Positive! Exactly how I would like to see it myself.
Because of the increased speed of progress in the last decade, I feel that there is a change, more will happen in the next ten years than perhaps predicted.

I agree with @tomytl too.
Also progress in other fields outside hearing field will assist the understanding of hearing loss. (Especially molecular cell biology and yes stem-cell research). A real brake through does not necessarily needs to come from the otology research although it is pretty specialised.

So for our generation of sufferers, we have to go in Asia try stem cells and hope that functions on our problems ?

Japan understands the potential I think . Apparently they want to be at the forefront of stem-cell technology.

 

[chamferman]

If you look at the brain we have learned more about it in the last 5-10 years than in the whole history of the human race before that. Obama has put in $1 billion into the brain initiative that has the goal to map the whole human brain. Every single neuruon!

The EU have also made a big investment

 

[jeff W]

Thanks @jeff W . Interesting.

I only which that Moore's law also applies for knowledge in medical science. Every two years double the knowledge.
Perhaps Moore's law does apply and it is just an indication how huge the challenge is?

I am not able to answer that most deep of questions.

 

[jeff W]

Japan understands the potential I think . Apparently they want to be at the forefront of stem-cell technology.[/QUOTE]
The Japanese are heavily involved with research of the ear, also they dont have a religious right wing that can interfere with progress.

 

[Nick Pyzik]

I understand people having differing thoughts on when there will be a "cure". The sad fact is, we just do not know. Research is all good, but there are many barriers even to conduct clinical trials which itself can take many years; as we have seen with Genvec's trial. The following is from Stanford Initiative to Cure Hearing loss:

"We are discovering that almost all of these causes of hearing loss, whether from noise exposure, chemicals, or aging, have significant genetic components. A few hundred genes are thought to be involved in hearing loss, but to date only half of them have been identified. At SICHL, our research is dedicated to characterizing this missing knowledge by discovering these genes".

I don't believe that it's all Gene's that cause hearing loss. I believe that it's the

Japan understands the potential I think . Apparently they want to be at the forefront of stem-cell technology.

The Japanese are heavily involved with research of the ear, also they dont have a religious right wing that can interfere with progress.
[/QUOTE]
Yes, they have been thoroughly involving themselves in stem cell technology and have shown quite a few results from their newly created treatments. They've also figured out a great route to take when repairing auditory damage with stem cells. I believe Japan will be one of the first to make a difference in our hearing with stem cells, especially with how their system is for clinical trials.

 

[Nick Pyzik]

As far as I know there really is no conclusive way to determine if someone has tinnitus or not just by putting them in an MRI machine. And there sure is no way of objectivly determining the severity of tinnitus. We can maybe say that someone has increased activity in a part of the brain and suspect that "ok, it's likely that this person has tinnitus", but we can't tell how loud it is. You have to remember that 90% of all people hear tinnitus in a sound proof room. It's just not as loud as for any of us.

They are acctually working on diagnostic tools to objectivly measure tinnitus. I think this should be the first priority because once we have that we can throw anything but the kitchen sink at it and acctually measure how it effects tinnitus. Just like when you test a cancer drug you do scans and can see if the tumor is shrinking.

The main problem with tinnitus is that it's not really a condition or a disease. It's just a symptom and it can be caused by a number of issues. We talk about regrowing hair cells and nerve fibers and so on. But the thing is, you can have tinnitus and where there is nothing wrong with your hair cells!

Imagine trying to find a treatment for nausea. We all know that nausea can be caused by pretty much anything from anxiety to cancer. This is basically what people are doing when they are talking about curing tinnitus. There will never be a single one cure for tinnitus. What we will have is a cure for sensoneural hearing loss, microvascular compression and so on and so on...

Tinnitus is found in the Limbic System. Where we process information, make memories, feel emotions, learn new skills, get motivation, use behavioral actions. The auditory system is directly associated with the limbic system. Basically in the same area. Researchers says that the brain switches to using the frontal lobe region much more when one develops Tinnitus. Could it be that the brain just physically can't use the regions as displayed below in the picture? The brain is made up of neurons. Clearly there has been damage to those regions indicated and neurons have had to of been damaged in those spots, thus not allowing the brain to properly conduct neurotransmissions or let alone even conduct them at all?

"The picture below is the brain of a man who had been having epileptic seizures all his life and allowed doctors to conduct tests directly on his brain as he was having surgery. The dots circled on the brain represent regions that were more active than those without circles.

 

[Nick Pyzik]

The ear has immune privilege, also it has a closed loop to other parts of the body, it is a fortress against pathogens, it is theorized that virus loaded cells actually access the ear through the mouth, then from the brain cisterns radiate upwards to the facial nerve and hop across to nerve viii, not from the outer ear or pinna as most people perceive. A way to deliver a payload will have to be direct to the inner ear, thats why stem cells introduced into the arm intravenously probably would have no effect on the ear.

Yes, researchers at the University of Kyoto in Japan have discussed in recently published documents online showing just how important it is for stem cells to be transplanted on to damaged glial scars to allow full recovery of damaged neurons in the inner ear to brain connection. They also showed how this would be done as displayed in the picture below and then talked about how a treatment would be done for stem cells to properly be transplanted to the location between the ear and the brain. They stated that they would need to surgically remove the bone behind our ears which would then allow a clear area to get the most out of the procedure.

And also stem cells injected into the spine will have no effect on the ear.....

Full PDF: http://www.pnas.org/content/112/26/E3431.full.pdf

 

[jeff W]

Yes, researchers at the University of Kyoto in Japan have discussed in recently published documents online showing just how important it is for stem cells to be transplanted on to damaged glial scars to allow full recovery of damaged neurons in the inner ear to brain connection. They also showed how this would be done as displayed in the picture below and then talked about how a treatment would be done for stem cells to properly be transplanted to the location between the ear and the brain. They stated that they would need to surgically remove the bone behind our ears which would then allow a clear area to get the most out of the procedure.

And also stem cells injected into the spine will have no effect on the ear.....

Full PDF: http://www.pnas.org/content/112/26/E3431.full.pdf

View attachment 9617

Funny, I only read that paper on the toilet a few months ago, it really brightened my day. I have spoken with several researchers that disagree on the injury type. Nerve viii is the entrance to the central nervous system (glial) and the external (radiating outwards) nerve is peripheral (schwann cell) when these nerves get damaged, some believe a physical barrier exists and others believe it is simply molecular cues that inhibit signalling. But the type of injury (pns or cns) is very important as they are different tissue types. Seek redlich-obersteiner zone

If you hear anything about nerve repair of the viii nerve using stem cells, PLEASE come back here and share it, it is my obsession and I am eager to learn more.

 

[grate_biff]

Imagine trying to find a treatment for nausea. We all know that nausea can be caused by pretty much anything from anxiety to cancer.

Do not think that is an especially good example as there are many drugs out there to treat nausea. Regardless of what causes it

 

[Nick Pyzik]

Funny, I only read that paper on the toilet a few months ago, it really brightened my day. I have spoken with several researchers that disagree on the injury type. Nerve viii is the entrance to the central nervous system (glial) and the external (radiating outwards) nerve is peripheral (schwann cell) when these nerves get damaged, some believe a physical barrier exists and others believe it is simply molecular cues that inhibit signalling. But the type of injury (pns or cns) is very important as they are different tissue types. Seek redlich-obersteiner zoneView attachment 9618

If you hear anything about nerve repair of the viii nerve using stem cells, PLEASE come back here and share it, it is my obsession and I am eager to learn more.

Do you believe you have damaged your auditory nerve?

 

[jeff W]

Do you believe you have damaged your auditory nerve?

no, vestibular superior division.

 

[Nick Pyzik]

no, vestibular superior division.

Can you explain more about what that is? Does it contribute to how one hears sound?

 

[jeff W]

Can you explain more about what that is? Does it contribute to how one hears sound?

the vestibular nerve has 2 primary branches, it joins the cochlear nerve and travels to brainstem, the vestibular system is much more complicated than hearing organ so there is no way I could describe it, however all the neuritis/neuronitis type disorders involve dead neurons, my hope it that a therapy for cochlear neuritis will be transferable to balance nerve injuries.
But to answer your question "does it affect how one hears sound?" nobody is sure as of yet. Geoff Raimans OEC model, Marcelo Rivoltas otic progenitor work with es cells, Hinrich Staecker are all possible techniques to regenerate nerve tissue in the ear.

 

[Nick Pyzik]

View attachment 9619


the vestibular nerve has 2 primary branches, it joins the cochlear nerve and travels to brainstem, the vestibular system is much more complicated than hearing organ so there is no way I could describe it, however all the neuritis/neuronitis type disorders involve dead neurons, my hope it that a therapy for cochlear neuritis will be transferable to balance nerve injuries.
But to answer your question "does it affect how one hears sound?" nobody is sure as of yet. Geoff Raimans OEC model, Marcelo Rivoltas otic progenitor work with es cells, Hinrich Staecker are all possible techniques to regenerate nerve tissue in the ear.

Hmm. What made you become interested in this nerve? Do you have tinnitus?

 

[jeff W]

Hmm. What made you become interested in this nerve? Do you have tinnitus?

yes, I am interested in this nerve because mine is broken. Why else. I want to cheat my suffering and recover. The inner ear neurons DO NOT REGENERATE after injury like the nerves in the arms and legs. We need to intervene mechanically. People on here have no idea how big this Staecker trial really is, even if Genvec fails, I dont really care, gene therapy is mickey mouse compared to the power of es progenitors delivered into the ear, now (thanks to Staecker) we have a delivery system, bring on Rivolta model and then lets see what the japanese can do with their own payloads. We will be able to repair ALL the cells of the ear, not just one.

 

[Nick Pyzik]

yes, I am interested in this nerve because mine is broken. Why else. I want to cheat my suffering and recover. The inner ear neurons DO NOT REGENERATE after injury like the nerves in the arms and legs. We need to intervene mechanically. People on here have no idea how big this Staecker trial really is, even if Genvec fails, I dont really care, gene therapy is mickey mouse compared to the power of es progenitors delivered into the ear, now (thanks to Staecker) we have a delivery system, bring on Rivolta model and then lets see what the japanese can do with their own payloads. We will be able to repair ALL the cells of the ear, not just one.

Wow I've finally found someone on this forum who is as worried about repairing their inner ear neurons as I am! So you think you've damaged the neurons of your inner ear and not the hair cells?