Inner Ear Hair Cell Regeneration — Maybe We Can Know More

What I'm most curious is about people who have hearing loss, and damaged hair cells, and yet who don't get T. If so, how can that be? If they ever figure they out, they'll be a long way closer to understanding the whole thing.

That is a strange one; but it must have to do with the various layers of T (inner ear, cochlea, auditory nerve, auditory cortex, and neuro network). I think things can go wrong anywhere in there (like in the auditory cortex or the neuro network) and it causes T or the 'right' components remain undamaged and the person doesn't experience T. What are those components and how, exactly, do they work together? I have no idea...
 
And what on earth is residual inhibition all about.
There are folks who can have a shower and not hear their tinnitus for 4 hours. Explain.


So maybe there is more than one "source". More than one fix. More than one hope.

John
I watched the video (fascinating, thank you); I was thinking about your 'shower' comment (causing residual inhibition) and I've noticed many T sufferers experience the same dynamic -- T goes down while in the shower. I think the video made the point about the somatasensory input acting as an inhibitor (empowering GABA inhibitors); perhaps the shower is the ideal 'water massage' for those over-tight muscles reporting in to the brain as such. And, face it, most people are simply more relaxed in the shower.

Just a thought...

Mark
 
Does anyone out there have any input as to the efficacy/validity of Acoustic CR Neuromodulation? I watched the video ; interesting...
 
Indicators for the relationship between hearing loss and tinnitus are out there.
A lot of older folks with hearing loss also have tinnitus. But that's more generalization than accurate science, as maybe ten times as many don't have tinnitus. Anybody got the real stats?

Hearing aids do help some by we are told re-supplying missing frequencies.
So in some cases, maybe tinnitus is about the brain compensating for lost input, but does this apply to all of us? I don't know.

As Littlebailey says, puzzling out the exceptions is the key to the puzzle.

My father's hearing is terribly damaged, I mean bad, and not a single tinnitus tone.
Explain that instead of brushing it under the carpet and your cure is closer.


And what about me. My next level tinnitus was triggered I'm sure by CNS shock.
Part of me feels that CNS stress/shock via noise or pharma is a real key, more so than
'damage'. I feel my brain in crisis sought out a damaged area, but that's just a hunch.


So will restoring hearing via stem cells eliminate tinnitus? It should do for a lot of people.
Correcting weak or faulty signalling up and down the auditory pathways sounds about right.
The argument for peripheral intervention is strong.
Look at Dr.Robert.A.Levine's fusiform cells theory (Harvard guy)



Also look at cochlear implants eliminating tinnitus.

And check this out:
Transtympanic Electrical Stimulation for Immediate and Long-Term Tinnitus Suppression
http://www.tinnitusjournal.com/detalhe_artigo.asp?id=44

And what on earth is residual inhibition all about.
There are folks who can have a shower and not hear their tinnitus for 4 hours. Explain.


So maybe there is more than one "source". More than one fix. More than one hope.

For example, Autifony will likely also cure. Not by compensating for lost auditory input,
but by targetting over-active neurons.

Same for early-days tDCS. And so on.

And look at HIFU. That is a TCD thing and may deal with different types of tinnitus, I don't know.

It would be nice to have a single unity theory which embraces and explains how
diverse treatments are linked. There is a mountain of clues on pubmed,etc. Maybe
that's what this place is for. Many great crimes have been solved by amateur sleuths.
A lot of research is tunnel-visioned on specific branches of science.
Many researchers are not necessarily looking for 'big picture' links.

So Littlebailey's question needs to be answered.
Some with hearing damage get tinnitus, others don't.
And some with 'noise-induced' tinnitus later experience total perceptual habituation
without stem cell therapy or autifony or whatever.

Of the apparent void between those who do and don't get tinnitus, how can that be?

Whatever the answer, we should be grateful that stem cell therapy, though vital,
is not the only fruit. In terms of tinnitus, hope is coming from everywhere.

We could certainly do without the likes of Randy Robinson bringing the reputation
of this noble science into disrepute. Someone shut him down please.

John I know your fairly new to this forum but you have probably just made the most educated post Ive ever read here and speaks volumes about my theory on T,H so I completely agree with what you just said.My sound incident at the start of this year didnt damage my hearing supposedly but I believe it shocked my nervous system and is now all going crazy as a result.Alot of people blame T on haircell damage being the only culprit but this simply is not the case,it could originate anywhere in the auditory system whether it be the auditory nerve or or the auditory brainstem heck its possible to go deaf with a perfect cochlea and auditory nerve and this type of deafness is called central hearing loss or central deafness which is quite rare and usually develops from brainstem lesions or MS.But the funny thing is alot of these patients experience T and H as a result but yet very few develop it from haircell damage or traditional hearing loss as we know it.To me it points at a central cause that T and H is a direct result of nervous system aggitation or over excitbility which would explain why lots of people experience T and H from withdrawel from medications that work on the central nervous system such as benzos.To me the clues are all there layed out in front of us but no one seems to want to open their eyes to whats stareing us in the face,the answer.I was recently inspired by a weird gadget my friend purchased recently,it was a tv screen with a little button and when you pushed the button a flash of electricity would pass through the tv.As he was pushing the button for some reason I kept picturing it as impulses through the auditory brain,and then the inspirational event happened,a pretty dumb friend of ours hit the button way too hard and the whole screen lit up but after it lit up parts of the screen stayed lit and flashing even though no one was touching the button,to me it was like looking at a T brain in the making.Then when we pushed the button again the screen would flash much brighter than before,the screen was overreacting to the stimulous which replicated a H brain in the making.Now our friend was prety annoyed about our friend breaking it the first night hed bought it but I found what happened extremly interesting and to this day the screen still continues to flash all on its own.
Excuse the term T brain but I didnt now what else to call it;)
 
John I know your fairly new to this forum but you have probably just made the most educated post Ive ever read here and speaks volumes about my theory on T,H so I completely agree with what you just said.My sound incident at the start of this year didnt damage my hearing supposedly but I believe it shocked my nervous system and is now all going crazy as a result.Alot of people blame T on haircell damage being the only culprit but this simply is not the case,it could originate anywhere in the auditory system whether it be the auditory nerve or or the auditory brainstem heck its possible to go deaf with a perfect cochlea and auditory nerve and this type of deafness is called central hearing loss or central deafness which is quite rare and usually develops from brainstem lesions or MS.But the funny thing is alot of these patients experience T and H as a result but yet very few develop it from haircell damage or traditional hearing loss as we know it.To me it points at a central cause that T and H is a direct result of nervous system aggitation or over excitbility which would explain why lots of people experience T and H from withdrawel from medications that work on the central nervous system such as benzos.To me the clues are all there layed out in front of us but no one seems to want to open their eyes to whats stareing us in the face,the answer.I was recently inspired by a weird gadget my friend purchased recently,it was a tv screen with a little button and when you pushed the button a flash of electricity would pass through the tv.As he was pushing the button for some reason I kept picturing it as impulses through the auditory brain,and then the inspirational event happened,a pretty dumb friend of ours hit the button way too hard and the whole screen lit up but after it lit up parts of the screen stayed lit and flashing even though no one was touching the button,to me it was like looking at a T brain in the making.Then when we pushed the button again the screen would flash much brighter than before,the screen was overreacting to the stimulous which replicated a H brain in the making.Now our friend was prety annoyed about our friend breaking it the first night hed bought it but I found what happened extremly interesting and to this day the screen still continues to flash all on its own.
Excuse the term T brain but I didnt now what else to call it;)

How can someone with central deafness have H? That seems impossible to me. If there's no sound entering the brain I mean.
 
How can someone with central deafness have H? That seems impossible to me. If there's no sound entering the brain I mean.
People can experience H with central hearing loss but obviously not with central deafness,symptoms of central hearing loss may include Tinnitus,Presbycusis,Reduced ability to understand speech,Auditory Hallucinations,Hyperacusis,Inability to understand what sounds outside of speech represent i.e the affected individual will not be able to understand what the sound of a phone ringing means.Central hearing loss appears after there is a disruption to auditory processing which usually starts in the auditory brainstem.It can occur through damage or over stimulation but is mostly linked to brain tumours,lesions and MS.
 
it.To me it points at a central cause that T and H is a direct result of nervous system agitation or over excitability which would explain why lots of people experience T and H from withdrawel from medications that work on the central nervous system such as benzos.

Agreed.

One factor preceding my T was serotonin syndrome from a (6month) effexor taper.

The similarities with chronic pain are clear.
A meaningless phantom pain devoid of purpose.
An over-sensitized central nervous system typified by hyper-vigilance and exaggerated startle response.
We have 'damage' all the time, that's part of ageing.
It's the suddenness' factor that's overlooked.

I would therefore like to quote a post by DAN in another thread called 'New Theory of Hearing Loss/Tinnitus?'

Read this, it's very good:

"I don't think that t will happen for certain if it were cured by say neuron ablation. This is because tinnitus emergence takes very strong triggers - emotionally and neurologically. Most of us with severe tinnitus had some sort of heavy stress and an abrupt hearing loss noise exposure combined before tinnitus onset. I think to prevent tinnitus one has to lead a stress free life and avoid loud noises - a hard feat in our day and age.
Nature has designed us with internal fail-safe mechanisms so as we normally age, our brains easily compensate for loss of input. It is when we put stress on that system, those of us who were susceptible had those filters break down. Let me give an example. Dr.Jeanmonod talks about a brain operation he did on a neurogenic pain patient in one of his interviews. The patient had a great improvement but at the 6month post-op, she had a death in the family and the pain returned full blast. After some counseling, she had eventually regained back her progress."



So combinations of stress and sound can feed into CNS overload.
Think about the language. Acoustic shock = acoustic + shock. Paired elements.
The stress/shock factor is multiple choice.....grief, work pressure, medicine, noise,etc. Being human.
Of course, gun blasts and the like bring both sound and shock to the table simultaneously.
Even lower-level sound experienced for too long can translate to fatigue, overload, slow-form shock.
As an analogy, both sudden shell-shock & prolonged combat fatigue will overtax the CNS on different timelines.

But the common factor is system stress. This sets the stage.
The clue to tinnitus genesis lies in the very same factor that makes tinnitus worse. Stress.
And of course T is self-harvesting. It creates stress to survive.

Read about anxiety and you will see it is like a new building with scaffolding, a distinct neural architecture, a body with its own emerging needs. A building you must demolish. because neural plasticity can go both ways. The brain doesn't judge, it follows you. Whatever road you take.

The concept of damage upsets people and can foster a mindset detrimental to recovery. People generalize about chronic T becoming more complicated after 6 months, involving more and more networks of the brain. Well, this doesn't mean your T is becoming forever entrenched. In plain English, you're just more upset about it. Even more sensitized. And more parts of you are lighting up in response to the condition. We become sensitized to our own T. Butthis is fluid and can change. Corners can be turned. By degrees. Its a process rather than a switch.

And habituation is not only possible, its a natural process. It could begin today, it might already have for you.
Many acute/short-term mild T sufferers see it vanish within a few weeks or months. I've met some of them.
'Damage' may probably have been contributory to genesis but it didn't stop these people getting well.

A big key to mild T is that it doesn't cause as much stress, so the CNS can recalibrate, let it go.
I think a lot of people with chronic T have a 'locked' CNS stress response which can be unlocked.
An over-sensitized CNS has invited tinnitus and the same apparatus keeps it. Part of getting well therefore means changing who we are to a degree, how we respond to the world.

People talk about habituation being a mind game. Well, its the ultimate mind game.
Through correct thinking, dowsing emotional responses, playing dead to the serial killer in the room,
we can feed the correct data to that deaf, dumb, blind primitive brain (we are its eyes and ears you know)
and permit it to alter the defcon status and reinstate filters which stop you hearing your own wheels.

Alternatively, ablate those neurons with HIFU and stay chilled to mute your limbic warning system.
Alternatively, go for the likes of smart drug Autifony which can apparently target naughty neurons.

I really wish we could all get better and shut down this forum, never need it again. Until that time,
I wish you all well and thank Dan for borrowing his informative post.

I know this thread is all about inner ear hair cell regen and don't want to steer it off-topic,
but it's important to realize that 'damage' is not an endgame. We talk about windows of
opportunity to heal after a sound-shock by taking powerful antioxidants, NAC, etc, because
there is indeed a cascade of chemical changes which knock out hair cells. We also hear about
cats and the like being re-exposed to loud sound to thwart that process. That gets you thinking too narrowly 'Oh man, its damage'. What we're focusing on here is the context of those changes because this opens the doors to other approaches and treatments.

ps. regarding Mark Mcdill's post on Acoustic CR Neuromodulation,
does anybody know of any successes from the DIY ACRN thread?



 
I don't normally reveal where I have been treated nor the sources of my information, but since you "caught" me, I have no choice but to say that I was treated at Hope Hospital too. I went there around x'mas time. This was my second stem cell treatment. I was treated in Zhuhai.

I stand by my accusations against Randy Robinson. I have proof in writing from the representative of the Hospital, Simon Lee - I can present these to Markku, at any time... I also have two separate witness accounts from when I was in China. Furthermore, if you look up the stem cell count figures on Randy Robinson's scam homepage, then you will see that the stem cell volumes he offers cannot be met by the hospital and are unrealistic (= 8 x 150 million = 1,2 billion stem cells); no hospital - anywhere in the world - treats patients with such high volumes. [Admittedly, the volumes on his homepage now state 4 - 6 units of 150 million stem cells, but that was not the case around x'mas time (which I can prove), and even with the adjusted volumes, the volume count is wrong because Hope Hospital uses 125 million stem cells per injection; not 150...].

Lastly, the letter of invitation that Randy Robinson issues is fake: it is easy to see that is so, because the Hospital signature/stamp is "behind" the writing on the sheet of paper. In other words, he uses a standard template with a prewritten stamp on it. This is illegal.

I also have other information about Randy Robinson which I will not present publicly. But I can present it to Markku, if necessary.

I hope you have great success with your treatment - and thank you for your account, as well.

Dear @attheedgeofscience
First of all hope goes well with you.
In you "journal" you said you were in Instambul going to Zuhai. So getting the place to be treated was easy to find. I got it as well. Truly hope you fine now. I my self start my tinnitus in a hotel not in Zhuai but in Shenzen. I travel to china 3/4 times a year due my job. I already contact them to get some info. Just wondering the results from your second treatment. since for what i do understand you got some results from first one. Let you know as well i suffer from Psoriese, so maybe depending on price wise, i´m really considering that treatment.

Fernando
 
Interesting reading about the Novartis Atoh1 trial. According to this read, Novartis invested 500 000 000$ in Aoth1 developement....
http://journals.lww.com/thehearingj...ser_to_a_Gene_Therapy_for_Hearing_Loss.6.aspx

Not surprising. In my industry, it's not unheard of for a company to spend 300-500 million dollars for the regulatory package on a GMO event. Hell, we spend over a billion a year on research alone. Now if only we could spend that on tinnitus... sigh.
 
Furthermore I have been initially in touch with Randy Robinson, the payments that have been made have all been received by the hospital otherwise I would not be here. I can provide further proof if required. (For the record, both the hospital and Randy Robinson have provided the same bank)

Here are the bank details I got. As you can see, the details are not the same! (In my case, at least...)

Bank Details Provided By Hope Hospital

Beneficiary Bank : Hang Seng Bank Limited
Beneficiary Bank Address : 83 Des Voeux Road Central, Hong Kong
Beneficiary Bank Code : 024
SWIFT Code : HASEHKHH
CHIPS No. : 010522 (for remittance from USA)
Beneficiary Name : Hope Biotechnology Co., Limited
Beneficiary Account Number : 774 315774 883
Bank Phone Number : (852) 2198 8000
Hong Kong Registered Address : 16/F., Kowloon Building, 555 Nathan Road, Mongkok, Kowloon, Hong Kong.


Bank Details Provided By Randy Robinson

Bank name: (HSBC) The Hongkong and Shanghai Banking Corporation Limited
Company Name/Account holder's name : Hope Medical Group Limited
Account No: 098-365471-838
Bank Code: 004
SWIFT Code: HSBCHKHHHKH
Branch address: HSBC
No. 1 Queen's Road Central
Hong Kong
Bank Phone number: (852) 2748 8288
 
Dear @attheedgeofscience
First of all hope goes well with you.
In you "journal" you said you were in Instambul going to Zuhai. So getting the place to be treated was easy to find. I got it as well. Truly hope you fine now. I my self start my tinnitus in a hotel not in Zhuai but in Shenzen. I travel to china 3/4 times a year due my job. I already contact them to get some info. Just wondering the results from your second treatment. since for what i do understand you got some results from first one. Let you know as well i suffer from Psoriese, so maybe depending on price wise, i´m really considering that treatment.

Fernando

Try this:

https://www.tinnitustalk.com/threads/am-101-tactt1-results-released.1994/page-21#post-38500

And yes, a stem cell treatment should have a beneficial effect on your Psoriasis too. I do not recommend Chinese stem cell treatments. Yes, they are safe, but the quality of care is below standard (ie. room facilities, catering, and help during the 3 week stay). They only reason I went was because it is difficult to find a treatment centre that would treat uncommon pathologies such as hearing loss and tinnitus. And I wanted a treatment that delivers a high dosage stem cell count.

The stem cell treatment in Bangkok on the other hand was top quality, very high tech, and performed by seriously competent staff. I will probably release some unique scans they performed on me using a Bio Scanner; a prototype originally designed for the Russian Space Agency. I was lucky enough to meet the designer of this particular unit while in Bangkok. There are other units out there, but his version is the only one which works using a SuperChip. It is the first time ever that the device has been used to look for pathologies in a tinnitus patient.
 
Interesting reading about the Novartis Atoh1 trial. According to this read, Novartis invested 500 000 000$ in Aoth1 developement....
http://journals.lww.com/thehearingjournal/Fulltext/2014/06000/Moving_Closer_to_a_Gene_Therapy_for_Hearing_Loss.6.aspx

This is why donating to the American Tinnitus Association is so irrelevant (from a research perspective). Even if the ATA can gather USD 50-100k for a research grant, it truly is just a "drop in the ocean" which will achieve... nothing.

The best thing the ATA could do right now with the kind of money they can get would be to hire to some hardcore lobbyists who can convince the US Congress to see the logic in spending an additional 1 billion dollars in tinnitus research (now) - with the advantage of not having to spend so much money on tinnitus disabilities in the future. This is also known as "NPV investment cost-benefit analysis"; a term many politicians do not seem to be aware of...
 
This is why donating to the American Tinnitus Association is so irrelevant (from a research perspective). Even if the ATA can gather USD 50-100k for a research grant, it truly is just a "drop in the ocean" which will achieve... nothing.

The best thing the ATA could do right now with the kind of money they can get would be to hire to some hardcore lobbyists who can convince the US Congress to see the logic in spending an addtional 1 billion dollars in tinnitus research (now) - with the advantage of not having to spend so much money on tinnitus disabilities in the future. This is also known as "NPV investment cost-benefit analysis"; a term many politicians do not seem to be aware of...

Hi ATEOS,

I don't thinks it's just a drop in the ocean because most of basic research is done by small special teams at univeersities. The same happened with this atoh1 approach, it was done by university of michigan.
Later when the big pharma's come in the game than numbers looks very different.
But also for companies like Novartis, research in novel therapies are highly risky investment.

In my opinion, raising money for research project are very important.

Greets Tom
 
Not surprising. In my industry, it's not unheard of for a company to spend 300-500 million dollars for the regulatory package on a GMO event. Hell, we spend over a billion a year on research alone. Now if only we could spend that on tinnitus... sigh.

what industry are you working for?
 
Try this:

https://www.tinnitustalk.com/threads/am-101-tactt1-results-released.1994/page-21#post-38500

And yes, a stem cell treatment should have a beneficial effect on your Psoriasis too. I do not recommend Chinese stem cell treatments. Yes, they are safe, but the quality of care is below standard (ie. room facilities, catering, and help during the 3 week stay). They only reason I went was because it is difficult to find a treatment centre that would treat uncommon pathologies such as hearing loss and tinnitus. And I wanted a treatment that delivers a high dosage stem cell count.

The stem cell treatment in Bangkok on the other hand was top quality, very high tech, and performed by seriously competent staff. I will probably release some unique scans they performed on me using a Bio Scanner; a prototype originally designed for the Russian Space Agency. I was lucky enough to meet the designer of this particular unit while in Bangkok. There are other units out there, but his version is the only one which works using a SuperChip. It is the first time ever that the device has been used to look for pathologies in a tinnitus patient.

Many thanks for your answering, My main reason for the steam cell is to help on the Tinnitus mostly. If will help on the Psoriasis great.
I´ve been going to china 2/3 time a year for over 15 years So i considering the room facilitas and everything else is no matter for me. i know china and chinese way of thiking preattyl well.
I can handle 3 weeks easy.
My main question, if in terms of treatment/ result the Bangkok Clinic is better than the chinese hospital

Super thank full.

I have some other quastions i would like to make you?
I don´t mind to post them here, but if would prever in private chat or by mail.

Onc e again many tahnks.
Fernando
 
Many thanks for your answering, My main reason for the steam cell is to help on the Tinnitus mostly. If will help on the Psoriasis great.
I´ve been going to china 2/3 time a year for over 15 years So i considering the room facilitas and everything else is no matter for me. i know china and chinese way of thiking preattyl well.
I can handle 3 weeks easy.
My main question, if in terms of treatment/ result the Bangkok Clinic is better than the chinese hospital

Super thank full.

I have some other quastions i would like to make you?
I don´t mind to post them here, but if would prever in private chat or by mail.

Onc e again many tahnks.
Fernando

No problem.

The issue with treating a hearing disorder using stem cells - with today's technology - is that there is no method of directly injecting the stem cells into the cochlea. They need to be delivered either as IV or lumbar puncture. This method is very indirect - and only a fraction of the stem cells are therefore likely to reach the intended target. Most stem cells will end up in the major organs/structures of the human body such as the liver, heart, brain, hips, knees - anywhere where inflammation is found (this is how stem cells navigate around the body - by detecting inflammatory/chemical signals released by damaged tissue). For this reason, I believed - and continue to believe - that stem cell volume plays an important role. This was the reason why I went to Hope Hospital. I was scheduled for 500 million stem cells (umbilical cord MSC); this is a very high volume normally only used for serious neurological conditions such as ataxia, cerebral palsy, MS, etc. I only managed to receive 250 million stem cells due to rejection of the stem cells by the 3rd injection; this is very uncommon - actually my case is the most serious/unusual to date. Rejection of stem cells can be prevented by using your own. Probably. Initially, the board of doctors at the Hospital flat out refused further treatment (even with a culture expansion using my own stem cells). The decision was later overruled by the director of the Hospital, Dr. Yang; she is the most experienced stem cell physician in the world (having personally overseen 3000 stem cell treatments during her career). They then offered me the option of coming back for further treatment later on - an option I have not pursued due to problems that have since arisen between the Hospital and myself.

So which is better? Zhuhai or Bangkok? I cannot really tell you. All I can say is that I am doing better. In both cases I experienced the same specific "symptoms" of the treatment 2-4 weeks after the stem cell injections: very strong fleeting tinnitus incidents that would come in waves of 2-3 days at a time. Slowly thereafter, I began to see an improvement in my tinnitus. This cycle would repeat itself for about a month where I would gradually continue to see improvments. The fleeting tinnitus incidents then began to fade...

If I were to do it all over again, I would probably go back to Bangkok for a stem cell treatment simulating the Chloe Sohl protocol (= 3 x 200 million autologous MSC stem cells, delivered 5 days apart after culture expansion). I would also have pursued the LLLT route a little bit further - possibly investing in a medical grade laser such as the luminex high dosage lasers (http://medicallasersystems.com/products.html). I have come to greatly appreciate the works of Dr. Wilden - he is a true pioneer and an expert on the physiology of the inner ear; most ENTs have infantile knowledge compared with Dr. Wilden when it comes to basic cell biology and the intrepretation of audiograms. His website is an entire encyclopedia of knowledge (www.dasgesundeohr.de). I cannot recommend it highly enough. The reason his work is so underrated is because regenerative processes take time. And so patients give up/quit too soon. By the time someone develops tinnitus, the inner ear will often have been in an overstrained state for many, many years. This kind of damage is not just repaired "overnight". Unfortunately there have not been any LLLT studies done where LLLT therapy is continued for 6, 12, or 18 months. Instead you get useless studies where a patient is given LLLT for 10 minutes per day for 2, 3 weeks using a 5 mW laser. Such studies are worthless. Alternatively, you can also consider HIFU.

I would stay away from Chinese Hospitals. Yes, the treatment was safe (as far as I know). And yes, the nurses were friendly and polite at all times. But the room facilities were sub-standard and no meals provided either. So I checked into a Hotel and stayed there for the 3 weeks treatment course. There were also "other things": the hospital did a pre-screening of infectious diseases such as HIV, hepatitis ABC, and Syphilis without my consent. In my case, that is not a problem - because I know all about hospital procedures (and therefore what to expect). But... they should have asked before running such tests (it is a violation of the patient's privacy). They also did not ask for contact persons in case of a medical emergency. Again, any decent hospital would have done so for a longer hospital stay. A decent hospital would also follow-up with the patient after they return home (at various intervals). This is what the stem cell clinic in Thailand did (and I continue to stay in touch with them). There has also been other problems with Hope Hospital (which I cannot disclose in a public forum). For these reasons: stay away from Chinese stem cell treatment centres. They are only in it for the money. And nothing else.

If you have other questions, feel free to ask them.
 
Once again many thanks.
My Tinnitus is not so severe as your case, but is enough to take concentration at work, and lately i went on heavy anxiety, and after maybe depression. I intendo to try as much as I can to reduce it as much as possible.
Today i´m having a consult with the best (at least is what people say) Ottorhino in Portugal. And right after i´m making a high frequency Audiograme.
I´m already in contact with Dr Wilden to visit him in Ibiza a week time. Since i ad a small recovery ( trying to recheck that as well in today audiograms) in my ear without any treatment. Maybe a few sessions with him will help to lower a little more even. After I will decide if I will buy the laser or go back there in July for another sessions. Something i will discuss with him of corse. If things go well with Dr Wilden i will try to pass the steam cell, if not then i will go for.
Your point on number of cells makes all the sense. So the point on the decision is to know if the Bangkock Clinic can make the same amount as Chinese, which I presume from you mail they do.
If so and since you have my mail. Fell free to send me the contact of the Clinic in Bangkok.

I will later post my audiogram. Since for me, today is what I hope a new phase in my life.

Yes, chinese do care only for the money, trust I know that.

All the best

Fernando
 
Bumping this thread because the KU trial is just so cool I can't believe it. They said it would take forever to get to this point, and here we are and they are starting hair cell regeneration studies. Even if this one doesn't work out, it's a huge step forward:

http://clinicaltrials.gov/ct2/show/NCT02132130?term=CGF166&rank=1

We can carry on about curing tinnitus all day, but in my opinion, if we can repair the inner ear, tinnitus will take care of itself then.
 
Bumping this thread because the KU trial is just so cool I can't believe it. They said it would take forever to get to this point, and here we are and they are starting hair cell regeneration studies. Even if this one doesn't work out, it's a huge step forward:

http://clinicaltrials.gov/ct2/show/NCT02132130?term=CGF166&rank=1

We can carry on about curing tinnitus all day, but in my opinion, if we can repair the inner ear, tinnitus will take care of itself then.

Hi,
I also thought I wouldn't see any hair cell regeneration trials... normally everybody speaks in decades and after 5 years passed and we ask again it's again a decade... I remember when this ATOH1 findings where in the
press, in 2005...So they optimized it in the last 8-10 years.
It's exciting and I also think, if they could regenerate lost hair cells, they can do a lot more in future.

I also read some interesting articles about "gene therapy" in general. They wrote about gene therapy and it's 2. revolution...

Anyway, we will see... probably in 2017 when the trial ends.
 
No problem.

The issue with treating a hearing disorder using stem cells - with today's technology - is that there is no method of directly injecting the stem cells into the cochlea. They need to be delivered either as IV or lumbar puncture. This method is very indirect - and only a fraction of the stem cells are therefore likely to reach the intended target. Most stem cells will end up in the major organs/structures of the human body such as the liver, heart, brain, hips, knees - anywhere where inflammation is found (this is how stem cells navigate around the body - by detecting inflammatory/chemical signals released by damaged tissue). For this reason, I believed - and continue to believe - that stem cell volume plays an important role. This was the reason why I went to Hope Hospital. I was scheduled for 500 million stem cells (umbilical cord MSC); this is a very high volume normally only used for serious neurological conditions such as ataxia, cerebral palsy, MS, etc. I only managed to receive 250 million stem cells due to rejection of the stem cells by the 3rd injection; this is very uncommon - actually my case is the most serious/unusual to date. Rejection of stem cells can be prevented by using your own. Probably. Initially, the board of doctors at the Hospital flat out refused further treatment (even with a culture expansion using my own stem cells). The decision was later overruled by the director of the Hospital, Dr. Yang; she is the most experienced stem cell physician in the world (having personally overseen 3000 stem cell treatments during her career). They then offered me the option of coming back for further treatment later on - an option I have not pursued due to problems that have since arisen between the Hospital and myself.

So which is better? Zhuhai or Bangkok? I cannot really tell you. All I can say is that I am doing better. In both cases I experienced the same specific "symptoms" of the treatment 2-4 weeks after the stem cell injections: very strong fleeting tinnitus incidents that would come in waves of 2-3 days at a time. Slowly thereafter, I began to see an improvement in my tinnitus. This cycle would repeat itself for about a month where I would gradually continue to see improvments. The fleeting tinnitus incidents then began to fade...

If I were to do it all over again, I would probably go back to Bangkok for a stem cell treatment simulating the Chloe Sohl protocol (= 3 x 200 million autologous MSC stem cells, delivered 5 days apart after culture expansion). I would also have pursued the LLLT route a little bit further - possibly investing in a medical grade laser such as the luminex high dosage lasers (http://medicallasersystems.com/products.html). I have come to greatly appreciate the works of Dr. Wilden - he is a true pioneer and an expert on the physiology of the inner ear; most ENTs have infantile knowledge compared with Dr. Wilden when it comes to basic cell biology and the intrepretation of audiograms. His website is an entire encyclopedia of knowledge (www.dasgesundeohr.de). I cannot recommend it highly enough. The reason his work is so underrated is because regenerative processes take time. And so patients give up/quit too soon. By the time someone develops tinnitus, the inner ear will often have been in an overstrained state for many, many years. This kind of damage is not just repaired "overnight". Unfortunately there have not been any LLLT studies done where LLLT therapy is continued for 6, 12, or 18 months. Instead you get useless studies where a patient is given LLLT for 10 minutes per day for 2, 3 weeks using a 5 mW laser. Such studies are worthless. Alternatively, you can also consider HIFU.

I would stay away from Chinese Hospitals. Yes, the treatment was safe (as far as I know). And yes, the nurses were friendly and polite at all times. But the room facilities were sub-standard and no meals provided either. So I checked into a Hotel and stayed there for the 3 weeks treatment course. There were also "other things": the hospital did a pre-screening of infectious diseases such as HIV, hepatitis ABC, and Syphilis without my consent. In my case, that is not a problem - because I know all about hospital procedures (and therefore what to expect). But... they should have asked before running such tests (it is a violation of the patient's privacy). They also did not ask for contact persons in case of a medical emergency. Again, any decent hospital would have done so for a longer hospital stay. A decent hospital would also follow-up with the patient after they return home (at various intervals). This is what the stem cell clinic in Thailand did (and I continue to stay in touch with them). There has also been other problems with Hope Hospital (which I cannot disclose in a public forum). For these reasons: stay away from Chinese stem cell treatment centres. They are only in it for the money. And nothing else.

If you have other questions, feel free to ask them.
Sorry, only then I realize the Chloe Sohl was in a Korean, not Bangkock.
So my question remains, does the Bangkock Clinic offers same dose of steam cells as China Hospital?
Fernando
 
Bumping this thread because the KU trial is just so cool I can't believe it. They said it would take forever to get to this point, and here we are and they are starting hair cell regeneration studies. Even if this one doesn't work out, it's a huge step forward:

http://clinicaltrials.gov/ct2/show/NCT02132130?term=CGF166&rank=1

We can carry on about curing tinnitus all day, but in my opinion, if we can repair the inner ear, tinnitus will take care of itself then.
That's wild.

It's cool that in our lifetimes we'll see some actual cures. Even if this fails (which, given the investment money, is not really an acceptable outcome) then the information gained will be invaluable to more sophisticated solutions.

Still, the balls in Novartis's court. Investors want to see a payoff, for good reason, and it's in Novartis's best interest, even in case of failure, to reconvene and restructure their solution, if need be. These are exciting times, gentlemen and women =)
 
Sorry, only then I realize the Chloe Sohl was in a Korean, not Bangkock.
So my question remains, does the Bangkock Clinic offers same dose of steam cells as China Hospital?
Fernando

Chloe Sohl was treated by RNL Bio.

The clinic in Bangkok does not offer a treatment simulating the Chloe Sohl protocol (per standard). They offer the treatments I have described in my journal. It is possible however to ask them to do custom made solutions - something I began to look into around March/April this year (I had an e-mail exchange with them). Since then, I have decided to look for alternatives (ie. HIFU).

I do not really recommend stem cells for treating tinnitus. There is too great a chance that you will not get the results you had hoped for. If money is no issue to you, then by all means, have a go at it. But otherwise, I would look into therapies specifically aimed at treating tinnitus eg. HIFU, LLLT, clinical trials (AM101 or Autifony). [I realize AM101 is not an option in Portugal - but if by chance you hold another citizenship or dual-citizenship, you might be eligible for treatment in another country]

When it comes to hearing loss, I think there is a more realistic chance to have a good result from a stem cell treatment.

L Francis states he was treated by Cryocord in Malaysia. This is unlikely to be correct. Cryocord does not do stem cell treatments; Cryocord does stem cell banking. I had a dialogue with them last summer - and they kindly referred me on to their sister company, Cytopeutics. In the end, I decided to go to Thailand, but from the few e-mail exchanges I had with them, they seemed sincere and professional. And Cytopeutics will deliver a treatment simulating the Chloe Sohl protocol.

For you - and those who are interested - here is a website containing a very extensive list of stem cell treatment centres:

http://stemcelllist.com/index.php?option=com_mtree&task=listcats&cat_id=90&Itemid=27

I hope your visit to the ENT went well. Take care.

(And feel free to post your audiogram).
 
Thanks
Yes I went, but we decided to make some more tests, so everything is set up to next Wednesday.

But now i´m confused, in a post from you, You said that your tinnitus did not decrease after the LLLT, only after steam cells treatment in Bangkock. Or maybe was the continue of doing the LLLT that did decrease your Tinnitus. And you said as well that under 30 db LLLT would be the best

After your treatment in China, did you noticed a decrease as well? Same you did after the Bangkock tretament?

For now I´m just putting questions, and i´m sorry for that. But till I have my high frequency test maybe is to soon to decide. Anyway I´m going to Ibiza to meet Dr Widen for a 5 day treatment, and from there i will start to see the options. As i said previous.

I realise as well from your post that. Cytopeutics is not where you made your first treamemte. And make sense since your first treatment was from "umbilical steam cells" and Cytopeutics makes only from MSC, I´m I correct? For what I realise you trying to avoid what did happen in China when the 3rd injection was rejected.

Sorry for taking your time.

Thanks
Fernando
 
Thanks
Yes I went, but we decided to make some more tests, so everything is set up to next Wednesday.
But now i´m confused, in a post from you, You said that your tinnitus did not decriese after the LLLT, only after steam cells treatment in Bangkock. Or maybe was the continue of doing the LLLT that did decrease your Tinnitus.

After yuur treatment in China, did you noticed a decrease as well? Same you did after the Bangkock tretament?

Thanks
Fernando

Correct. I did not feel any significant change in my tinnitus after doing two months of LLLT and gaining 25db of hearing - hence the reason I went on to stem cell treatments instead. But as I have indicated in several of my posts, I think LLLT - in order to work - needs to be delivered over a longer period of time ie. I may have quit too soon (have a read of some of my many extensive commentaries in my introduction and elsewhere on this forum).

I have no doubt that the stem cells had an impact on my tinnitus. As I have stated - for both of my treatments - I began to develop volatile fleeting tinnitus 2-4 weeks after each treatment round. Slowly thereafter, I began to see an improvment. The fleeting tinnitus incidents I experienced are a sign of healing (ie. they were initiated by the stem cells). For each of my stem cell treatments, the fleeting tinnitus incidents lasted for about a month coming in waves of 2-3 days at a time.

The two treatments cannot be compared directly: in Thailand I received additional therapies besides the stem cells (ie. IV laser therapy, LLLT of the ear, oxyvenation therapy). In China I was not able to complete the full treatment - so it is difficult to gauge the effectiveness of the therapy. I would say that the treatment in China was less effective, but... that was also my second stem cell treatment (ie. perhaps there is a ceiling of just how effective stem cells are for tinnitus - meaning there perhaps comes a point after which any additional amount of stem cells will have no further effect; who knows...!). So it is difficult for me to evaluate the therapies directly/objectively. This is what we have doctors and scientists for. And given that stem cell therapies have now been around for almost 10 years, the doctors around the world have not been terribly busy doing their job (since I am the first person in the world to have done 2 separate stem cell treatments specifically for tinnitus - and in the timespan of 6 months, no less...!).

Here is the full list of known tinnitus patients having had some degree of success with stem cell therapies:

1) Chloe Sohl (primary condition: hearing loss/auto-immune disease, secondary symptom: tinnitus)
2) 2 MS patients (primary condition: multiple sclerosis with all the ususal symptoms, secondary symptom: tinnitus)*
3) Unknown male patient treated by RNL Bio in 2009 (primary condition: tinnitus).
4) Patient from the stem cell clinic in Bangkok - I met him (primary condition: head/knee injury after motorbike accident, secondary symptom: tinnitus).
5) Myself. x 2 stem cell treatments (20M pluripotent and +250M multipotent stem cells received); primary symptom: tinnitus.

* http://www.donmargolis.com/Home/Blog?tagid=92 (the story is confirmed).

I feel I have helped as much as I can at this point. I have provided so much information already in many of my posts- "the rest is up to you". When you are closer to making a decision - and if you still have questions, let me know.

Tare care.
 
Thanks
Yes I went, but we decided to make some more tests, so everything is set up to next Wednesday.

But now i´m confused, in a post from you, You said that your tinnitus did not decrease after the LLLT, only after steam cells treatment in Bangkock. Or maybe was the continue of doing the LLLT that did decrease your Tinnitus. And you said as well that under 30 db LLLT would be the best

After your treatment in China, did you noticed a decrease as well? Same you did after the Bangkock tretament?

For now I´m just putting questions, and i´m sorry for that. But till I have my high frequency test maybe is to soon to decide. Anyway I´m going to Ibiza to meet Dr Widen for a 5 day treatment, and from there i will start to see the options. As i said previous.

I realise as well from your post that. Cytopeutics is not where you made your first treamemte. And make sense since your first treatment was from "umbilical steam cells" and Cytopeutics makes only from MSC, I´m I correct? For what I realise you trying to avoid what did happen in China when the 3rd injection was rejected.

Sorry for taking your time.

Thanks
Fernando

No problem.

Mesenchymal stem cells (MSC) form the backbone of all neurological/auto-immune stem cell treatments performed today.

The source of MSC varies:
1) Some take the stem cells from the umbilical cord blood (= non-autologous stem cells, unless you had your own stem cells stored at birth).
2) Some take the stem cells from the umbilical cord (= non-autologous stem cells, unless you had your own stem cells stored at birth).
3) Some take the stem cells from the belly fat (= autologous stem cells).

Using your own stem cells should avoid any chance of rejection. But autologous stem cells from body fat are considered less potent (= cannot convert themselves into as many different cell types) and they are "old cells" (= cannot multiply as many times as young stem cells can; remember stem cells - after injection - start to multiply themselves as much as 50 times each). Hope Hospital did offer me a culturing process I was not previously aware of: doing a culture expansion of MSCs from my own blood; cells from the blood are not "old" in the same way MSCs are when harvested from the belly fat.

I have already - in earlier posts - described the culturing process, but I should add that stem cell labs which have so called good lab pratices do not culture using the same stem cells over and over again. They use only first and second generation stem cells (there is a limit as to many how times a stem cell can multiply itself - about 50 times). A patient does not want to be injected with "old" stem cells, because they will be less effective (as they cannot replicate themselves as many times as young cells can).
 
That's wild.

It's cool that in our lifetimes we'll see some actual cures. Even if this fails (which, given the investment money, is not really an acceptable outcome) then the information gained will be invaluable to more sophisticated solutions.

Still, the balls in Novartis's court. Investors want to see a payoff, for good reason, and it's in Novartis's best interest, even in case of failure, to reconvene and restructure their solution, if need be. These are exciting times, gentlemen and women =)

From what I've read, gene therapy is much more developed and save as 10 years ago and over 2000 trials are underway for many different health problems. The field is still in it's experimental stage, there is only one commercial treatment available from uniqure.com.
But the inner ear should be a good target for gene therapy because of it's separated location.
I think they will achive some hair cell growth. Critical is how new hair cells integrate with residual cells and if and how they will transmit sound.
But if there is proof of concept, I see a good chance for lot more optimized treatments.
Just speculation, I'm an optimistic sufferer not a scientist.
 
Here are the bank details I got. As you can see, the details are not the same! (In my case, at least...)

Bank Details Provided By Hope Hospital

Beneficiary Bank : Hang Seng Bank Limited
Beneficiary Bank Address : 83 Des Voeux Road Central, Hong Kong
Beneficiary Bank Code : 024
SWIFT Code : HASEHKHH
CHIPS No. : 010522 (for remittance from USA)
Beneficiary Name : Hope Biotechnology Co., Limited
Beneficiary Account Number : 774 315774 883
Bank Phone Number : (852) 2198 8000
Hong Kong Registered Address : 16/F., Kowloon Building, 555 Nathan Road, Mongkok, Kowloon, Hong Kong.


Bank Details Provided By Randy Robinson

Bank name: (HSBC) The Hongkong and Shanghai Banking Corporation Limited
Company Name/Account holder's name : Hope Medical Group Limited
Account No: 098-365471-838
Bank Code: 004
SWIFT Code: HSBCHKHHHKH
Branch address: HSBC
No. 1 Queen's Road Central
Hong Kong
Bank Phone number: (852) 2748 8288

Thanks for the details.

I am still here in China for another four days, my final IV injection is in three days. I hope to see an improvement in my hearing in the next few months. I have luckily habituated to my tinnitus some time ago.

For some reason I cant open a private conversation with you, I would highly appreciate if I were able to ask you 2-3 questions in private. Just 2-3 questions and no more. If you have an email I can send to?

Also, how long did it take you to get that 25db back. If I recall it was 3 and a half months? It was Sensorineural hearing loss you had wasn't it?

The colour of these Umbilical chord stem cells, was it yellow-ish?

All the best.
 

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