My Trip to Bangkok: Stem Cell Treatment [Comments]

[RichL]

i apologize if i offended.

You haven't offended me, I asked you a simple question and your not answering it!

 

[attheedgeofscience]

Certain members on this board have been questioning the science and competency of the Asian medical community (specifically Thailand by one member). Perhaps the following video clip (which happens to be from the very clinic I was treated at) provides a better impression (and understanding!):



I remain in contact sporadically with the medical director of the clinic, Dr. Htut (he can be seen at 3:40). The actual physician who treated me can be seen at 5:50. I still recall how I would meet with both of them every morning for a quick cup of coffee and chat about the day's programme. Sometimes a 3rd physician would join us; sometimes the managing director of the clinic. The atmosphere was informal and relaxed, yet serious at the same time. Great guys.

 

[PaulBe]

I wouldn't be so quick to dismiss the Thais and their system.

 

[Jurgen]

So are you going to update your log i am curouis about the next step you did i think that was 2 years ago

 

[1MW]

Can anyone explain with details the procedure of bankong stem cells?
I stronly believe that for hair cell regeneration is a scam but i want to ask a doctor in my area
that knows the field very good and give me a serious answer about that.

 

[attheedgeofscience]

So are you going to update your log i am curouis about the next step you did i think that was 2 years ago

It's probably best you define what exactly you are curious about - such as:

1. Stem cell therapy procedures (i.e. delivery methods: IV, LP, DI).
2. Sources of stem cells.
3. Locations performing stem cell therapy.
4. Diseases treated with stem cells (in general).
5. Stem cells in relation to otology conditions, specifically.
6. My trip to China, specifically.
7. Anything else?

I have shared my thoughts and after-thoughts on stem cells in various posts on this site. Admittedly, with +1000 posts on this forum, it can be a little daunting to find "my stuff", but I have compiled a directory of the most important bits and pieces via my profile:

www.tinnitustalk.com/members/attheedgeofscience.1629/

(Go to the "Information" tab).

 

[Vincent R]

@attheedgeofscience

I'd shortly want to the thank you for the extensive information you've provided here on TT. On your profile page you write:

I knew I had to try something different, something unconventional - if I didn't, I would simply be following the footsteps of the many others before me. The "many others" who had failed, that is...

The only aim that makes any sense is to defeat T. I don't know if this can be done or not, but I do think that the the methodology you apply is the most suitable.

 

[attheedgeofscience]

I stronly believe that for hair cell regeneration is a scam

Let me explain a few basics about biology. Binary states - in contrast to disciplines such as computer science and discrete mathematics - are unusual within the field of biology. An inner ear hair cell, for instance, does not need to be re-generated unless it is gone for good (= the final state). In biology, diseases exist on a continuous spectrum of varying degrees of severity (not binary states such as "0" or "1"; "on" or "off). Certain cells such as skin cells have the ability to divide (and hence multiply); certain organs such as the Liver are rich with tissue specific stem cells that ensure the organ is regenerated (the Liver will regenerate up to 25% under certain conditions: see keyword "blastema" in conjunction with "zoology" and/or "limb regeneration"). While tissue specific stem cells have been identified within a number of different types of human tissue (brain, heart, liver, etc), the number of neurons we are born with is more or less finite. So when a neuron is gone, it is gone for good (unlike e.g. skin cells). And that's where introduced pluripotent stem cells have the potential to make a difference.

The document attached with this post is a case study of a four year old boy who suffered from Meningitis leaving him severely hearing impaired. The boy was treated with cord blood stem cells and hearing improvement was evaluated objectively using ASSR tests (due to the boy's age). The post treatment evaluation was done just four weeks after the start of the intervention (it is therefore quite likely that further improvements may have taken place later on i.e. stem cells continue to have an impact for at least 2 to 3 months after treatment).

attheedgofscience
28/MAR/2015.

 

[1MW]

Which is the source of stem cells you got?
Which method used to inject to you? IV?
Iam asking that because i want to know the procedure to apply in europe or usa hospital.
I don't believe the reputation of any bankong clinic...
Also in a europe hospital i will do the procedure with my insurance for free..

 

[attheedgeofscience]

So are you going to update your log i am curouis about the next step you did i think that was 2 years ago

Sorry, but I have just checked the links I have previously compiled into one post in the following link (which is also one of links I have provided in my profile overview)...

www.tinnitustalk.com/threads/my-trip-to-bangkok-stem-cell-treatment-comments.1891/page-6#post-54877

...and the links are no longer "working" in the sense that they do not take you to the correct places within the thread in question (i.e. "Inner Ear Hair Cell Regeneration — Maybe We Can Know More"). The reason is probably that the thread was merged with another thread at one point and/or that certain other posts were deleted (essentially "distorting" the thread). Since the links I have originally provided are not dynamic in the XenForo software (= this forum platform), they longer point to the correct URL, but you can still find the posts (you just need to search a bit within the thread i.e. browse backwards/forwards, up/down)...

You (and others) are therefore going to have to make your way through the material bit by bit if you are interested, I am afraid. It's a bit of hassle, but at least the information is there (somewhere). In comparison, when I did my first trip to Bangkok some almost two years ago, you could not really find a single post on the entire Internet, because I was amongst the first handful in the world to ever become treated with stem cells for a condition such as tinnitus. For that reason, it took me about six weeks to gather enough evidence to make a decision on the matter...

attheedgeofscience
29/MAR/2015.

 

[skoupidis]

So, the 50% reduced T loudness remains through time? The same with the 25db hearing loss recovering from LLLT?
We are talking about real (although not full) cures here? Are you sure any benefits you had was due to these therapies you tried? Your experience and honesty on the subject is always highly apreciated ATEOS.

 

[Vincent R]

I don't mind drugs that supress T, but if possible, I'd rather have the damage in my ears recovered somewhat. So ATEOS has researched different treatments, and steamcell therapy worked to 50 percent (reduction of volume) in his case. That means there's a blueprint and I didn't even have to go look for it myself.

The treatment offers no guarantees, is expensive and carried out at your own risk. But it's still the best bet, and honestly, if T makes life a pain anyway, who cares about "risks"? The only thing that install fear in me is the possibility of T getting worse, I've been deprived of any other worries.

I don't have the resources to get it on right now, but within time I should have. I'll then have a close look at the information available here on TT, make sure I understand the scientific parts to the letter, and then I'll probably take my chances. When in a difficult situation, there's nothing that brings more meaning to life than to go for that small opening that can be spotted.

 

[1MW]

Which is the source of stem cells you got?
Which method used to inject to you? IV?

 

[attheedgeofscience]

Sorry, but I have just checked the links I have previously compiled into one post in the following link (which is also one of links I have provided in my profile overview)...

www.tinnitustalk.com/threads/my-trip-to-bangkok-stem-cell-treatment-comments.1891/page-6#post-54877

...and the links are no longer "working" in the sense that they do not take you to the correct places within the thread in question (i.e. "Inner Ear Hair Cell Regeneration — Maybe We Can Know More"). The reason is probably that the thread was merged with another thread at one point and/or that certain other posts were deleted (essentially "distorting" the thread). Since the links I have originally provided are not dynamic in the XenForo software (= this forum platform), they longer point to the correct URL, but you can still find the posts (you just need to search a bit within the thread i.e. browse backwards/forwards, up/down)...

You (and others) are therefore going to have to make your way through the material bit by bit if you are interested, I am afraid. It's a bit of hassle, but at least the information is there (somewhere). In comparison, when I did my first trip to Bangkok some almost two years ago, you could not really find a single post on the entire Internet, because I was amongst the first handful in the world to ever become treated with stem cells for a condition such as tinnitus. For that reason, it took me about six weeks to gather enough evidence to make a decision on the matter...

attheedgeofscience
29/MAR/2015.

The links mentioned in my post, above, have now been updated (and are working - thanks to @Markku ...).

 

[Jurgen]

I dont have tinetitus but a dapsone induced polyneuropathy.I was searching the internet for a blog of somebody how had stem cell thereapy. So i found your post.
I must say that your a very brave to to travel to thailand to do this.
Makes me remember a tv special of a guy in early 80s how went to china to do this.
There has not been made much progress to heal people how have this disease
I found some animal studies that where very prommising but nothing more.
What my question to you is did you find anything in your research about the long term negative effects of a adipose stemcell therapy?

 

[Everyloop]

@Jay M
Here it is
http://www.dr-wilden.de

His ofice is in IBIZA now, not germany. But I think there is a clinic in Southern California that does same treatment.

Check this page:
https://www.tinnitustalk.com/threads/low-level-laser-therapy-lllt-for-tinnitus-dr-wilden.295/page-4


Important to have a audigram all the way to 16 Mhz

Fernando

The last few weeks I have been in southern california. Who is the doctor here that does that?

 

[FERNANDO GIL]

The last few weeks I have been in southern california. Who is the doctor here that does that?

it´s the link that is on the post.
that is the only one i know

 

[Everyloop]

An article I found explains that stem cell IVs aren't that beneficial.

Keep in mind, this company does injected stem cell treatments resulting in the chance that this could just be a maybe you know our way is better story.

http://www.regenexx.com/2009/06/inj...s-only-00005-reach-their-target-in-the-brain/

 

[Mithrandir]

Congrates to try this way and have so good results with your T but stem cells therapy did improve your hearing loss too ? Did you make some audiograms to compare ?

Thanks !

 

[attheedgeofscience]

As it happens, I have not been active in this thread since a year. I had not really expected to make any updates as such, but none of us can ever know what the future holds...

About a month ago, I got back in touch with one of my contacts from the stem cell biotechnology field. Nothing unusual about that - I keep in touch with a wide range of experts all over the world (pertaining to otology, neurology, and regenerative medicine - and separately also advocacy). We discussed the latest info on tinnitus research - an area of which doctors of regenerative medicine typically are not so well versed in as stem cell therapy is generally applied to conditions such as autoimmune disease, degenerative conditions of the joints, and various neurological afflictions (to name a few). We discussed the recent setbacks of the QUIET-1 study but also new emerging knowledge of Kv-channel modulators such as Trobalt and their therapeutic potential relating to tinnitus. In addition, there are - besides the major FDA approved studies such as AM-101 - also a number of more toned down studies taking place: a doctor in Germany has completed a study involving some 300 patients with Lidocaine injections to the Otic Ganglion (with promising results). Through this discussion we started talking about how stem cell therapy could be also be improved for the specific conditions of hearing loss and tinnitus by adjusting the treatment protocol to include intratympanic injections (as well as the existing IV and spinal cord injections). A local application of stem cells would potentially greatly enhance the number of stem cells reaching the target area - but is also a procedure which requires great expertise (IV and spinal cord injections are done routinely, intratympanic injections - if involving the round window membrane of the inner ear - is something quite different).

When I underwent my first stem cell treatment almost three years ago, the procedure was all IV (spread across four injections). Since then, a few studies involving cochlear therapies of the inner have been carried out in animals. Attached is one such study (full text). The study involves adipose stem cells (such as those which can be harvested from a person's belly fat). The important take-away from the study is that the injected stem cells were not rejected and survived inside the perilympathic liquid. Adipose stem cells do not have true regenerative properties like embryonic stem cells, but act indirectly via number of mechanisms which are deemed helpful to restoring the cochlear function to some degree (and depending on the etiology e.g. autoimmune disease works really well with adipose stem cells). Important excerpts from this 2014 animal-study:

In this study, we have demonstrated that direct in vivo inoculation of ASCs through the round window into the guinea pig cochlea, does not induce any sign of distress or structural damage to the cochlea, and does not affect auditory function. In addition, we have originally shown that ASCs survive upon intracochlear inoculation, and migrate from the perilymphatic- to the endolymphatic-compartment.

...

The strong trophic potential of ASCs is believed to reside mainly in their angiogenic properties (Songetal., 2010); these cells are indeed able to promote woundhealing through angiogenesis and vasculogenesis (Nieetal., 2011) and are known to secrete a plethora of growth factors, including VEGF, that leads this process (Salgadoetal., 2010).

...

Our data demonstrated that the proposed approach is feasible in terms of (a) safety of implantation in preclinical setting and (b) cell survival in the perilymphatic- and endolymphatic-fluids. Further studies are compulsory to demonstrate the possibility of hearing improvement obtained through an ASC-based approach and to quantify
possible long term effects.

Due to the heterogeneity of tinnitus, it is probably necessary to approach treatment of tinnitus from a multifaceted approach. My contact is prepared to explore all avenues in this regard - this would include for instance exploring new knowledge of therapeutic targets such as the involvement of the Otic Ganglion, pharmacology, cold laser therapy, rTMS, and other supporting therapies such as cytoplasmic peptides which enhance the potency of injected stem cells. In addition, the existing treatment protocol already includes spinal cord injections - an improvement versus the treatment I received which consisted purely of IV delivered stem cells.

Just this morning, I reviewed the ATA webinar from the 21st of March, 2016. The subject was pharmacology and how tinnitus can possibly be treated with medicines modulating the two overall identified targets at the synaptic and ion channel level. With tinnitus and many other conditions, there is also the degenerative aspect of neurons. Neurons - unlike other cell types e.g. Liver cells - do not regenerate. Stem cell technology will therefore offer yet another angle not explored in most of the literature on tinnitus.

It is early days yet, but I am cautiously optimistic that something exciting could lie ahead. My contact is affiliated with a hospital (rather than a clinic) and hence has departmental capability at his disposal. In addition, this stem cell technology organization not only ensures delivery of stem cell technology, but also engages in stem cell research.

For those interested, here is the correspondence from earlier this week:

 

[medal]

Thanks @attheedgeofscience for sharing this with us! Although you already mention early days, would this multifaceted and new stem cell approach be possible to undergo this year? Or is this way too optimistic? Anyway good news to read!

 

[PatrickG]

This is really damn exciting. Early yes, but a step closet to a possible solution. Thanks @attheedgeofscience for sharing this with us!

 

[attheedgeofscience]

Thanks @attheedgeofscience for sharing this with us! Although you already mention early days, would this multifaceted and new stem cell approach be possible to undergo this year? Or is this way too optimistic?

As I mentioned, the contact in question - a medical director - does not have specific knowledge of the ENT discipline. The study I referred to about Lidocaine injections to the Otic Ganglion is not publicly available information - you can't find information on it anywhere. So certain "things" will need to be sorted out behind-the-scenes to facilitate the flow-of-information.

What I can say is the following. Just this morning, I reviewed the ATA webinar on pharmacology - I found it interesting (mainly because I can relate to what is being discussed - and hence re-affirming my own knowledge in the process). However, and for instance, Dr. Kaltenbach mentioned in his 15 minute review a study on Retigabine. To my knowledge, there is no study on Retigabine taking place anywhere (for the treatment review of tinnitus). We did contact the ATA some 1½ years ago when I was part of Team Trobalt, and the ATA back then, was not especially receptive to our request. I doubt anything has changed. And also, I know from my own sources in the field that, getting anything undertaken can take weeks and months - but most likely years. That's how your local government and affiliated institutions work: take another year to complete task x, y, z - because why not - who is, at the end of the day, going to hold us accountable?

I have contacts. Everywhere. Right now, there is no likely standardized treatment coming your way for the foreseeable future. The QUIET-1 study is off; SciFluor SF0034 could - in my opinion - be interesting to pursue for the treatment of tinnitus even if Retigabine analogues are only deemed worthwhile in the acute preventive stage of tinnitus. But, it would seem that there are certain forces who want things differently. Otonomy is another player in otology market segment, but due to the fact that Gacyclidine is another NMDA receptor antagonist (like AM-101), its therapeutic potential is likely to extend only to the acute stage.

Auris Medical is the best and most well led otology pharma company in the world. They are also the only pharma company with a 2nd generation tinnitus compound in their portfolio, AM-102. But it will take time before that gets on the market (and the patient profile remains undisclosed i.e. chronic/not-chronic) - remember standardized medication has to go through the rigorous double-blind FDA approved studies.

Within the medical establishment, there is no sense of urgency unless the topic relates to epidemics (e.g. Ebola, Flu). I can therefore safely say that the information I have provided today is potentially some of the most interesting you will ever read (if you suffer from tinnitus, that is...). Because... there is no one in, whatever country you live in, who can help you. This is the nature of indifference (of the world) in the year 2016.

 

[matt89]

Great news! Please keep us up to date when the treatment with intra-tympanic injections of mesenchymal stem cells will be available.

The study I referred to about Lidocaine injections to the Otic Ganglion is not publicly available information - you can't find information on it anywhere. So certain "things" will need to be sorted out behind-the-scenes to facilitate the flow-of-information.

If it's not possible for you to reveal further information about the study in Germany with Lidocaine injections to the Otic Ganglion, when can can we expect officially published information?

 

[beeeep]

If it's not possible for you to reveal further information about the study in Germany with Lidocaine injections to the Otic Ganglion, when can can we expect officially published information?

Some googleing brought up a book by Dr. Eberhard Biesinger "Tinnitus - Endlich Ruhe Im Ohr" (rough translation: Tinnitus - Silence in your ear at last). It's a book about Tinnitus that (according to the amazon summary) "[...]gives you an overview of all useful treatments[..] including TRT, meniere's and old treatments and new ones that may not yet be covered by your (German, I guess ) health insurance [..]
including an online test that shows which self-help method is the best for you[...]"

In the chapter about "Somatosensoric therapy approach: Muscles and Joints", he mentions in the section
"Neural- and Injectiontherapy" that

Relevant page on google books (for those that want to read the German original instead of my beautiful and most skilful translation below).

The principle of treatment is to block or modulate the nerve impulses on their way from the body to the brain. [..blabla..] For tinnitus, the goal is to stop - or at least dampen - harmful nerve impulses on their way to the brain. For this, one uses local anaesthetics like lidocaine. It is injected close to the nerve fibres and stops the transmission of signals. It can also be injected close to muscular tensions, neural nodes or reflex points.

In the following section "Trigeminal Nerve Therapy", he mentions that

Here, the otic ganglion [..] is targeted by the injection. This therapy is based on clinical results, especially from the U.S., that show that the trigeminal nerve has a special role in the development on tinnitus. Thus this therapy that blocks this nerve is very useful if used by an experienced physician.

The guy is a physician at a German ENT clinic http://www.hno-traunstein.de. Could well be that he did a study about this stuff, basically writing down his experiences with that kind of therapy.
However, I'd caution that there are many studies that show many things in medicine. If the above is true, I'd guess that there's no large double-blind study coming our way.
Also, the book makes it sound like this might only hep people where the cause is caused by muscular tension or related problems (TMJ or neck problems come to mind).

Since lidocaine seems to help some T sufferers if given IV, the question is if it helps more if you inject it into the otic ganglion or if it just has the same effect. Also, is it safer if used that way?

P.S.: Since I was a researcher in Computer Science (although that doesn't give me any specific knowledge about how publications in medicine work), I can tell that there can be quiet some time between finishing a scientific work and having it published in a journal or on a conference.

 

[Cor]

@attheedgeofscience i have done a ganglion procedure in The Netherlands. In this thread you'll find my experience. It's not the same treatment, but it's interesting that different specialists are targeting ganglions.

https://www.tinnitustalk.com/threads/nerve-block-for-tinnitus-relief.6226/

 

[matt89]

@attheedgeofscience i have done a ganglion procedure in The Netherlands. In this thread you'll find my experience. It's not the same treatment, but it's interesting that different specialists are targeting ganglions.

https://www.tinnitustalk.com/threads/nerve-block-for-tinnitus-relief.6226/

Thanks for this information.
But you received injections to the superior cervical ganglion which is based in the neck region.
The otic ganglion is located above the jaw near the ear.
I think this kind of treatment cannot be compared to otic ganglion injections or am I wrong?

 

[medal]

As I mentioned, the contact in question - a medical director - does not have specific knowledge of the ENT discipline.

Ok fair enough. Of course still looking forward to read more about this when you can provide us with any new info on this approach.

Within the medical establishment, there is no sense of urgency unless the topic relates to epidemics (e.g. Ebola, Flu). I can therefore safely say that the information I have provided today is potentially some of the most interesting you will ever read (if you suffer from tinnitus, that is...). Because... there is no one in, whatever country you live in, who can help you. This is the nature of indifference (of the world) in the year 2016.

Overall informative answer, unfortunately you're right. Still considering stem cell therapy in Bangkok after some LLLT sessions. I know it's not a cure but even a slight positive outcome will be helpful. Although you have answered almost everything in these stem cell threads would it be possible to contact you in the near future if I had some questions about the treatment given?

 

[Cor]

Thanks for this information.
But you received injections to the superior cervical ganglion which is based in the neck region.
The otic ganglion is located above the jaw near the ear.
I think this kind of treatment cannot be compared to otic ganglion injections or am I wrong?

It's absolutely not the same treatment, I said as much. But the treatment I received apparently targeted blood flow around the ear. I just find it cool to see science is thinking outside the box.

I think nothing has been as detrimental to tinnitus sufferers as ENTs.

 

[attheedgeofscience]

@attheedgeofscience i have done a ganglion procedure in The Netherlands. In this thread you'll find my experience. It's not the same treatment, but it's interesting that different specialists are targeting ganglions.

https://www.tinnitustalk.com/threads/nerve-block-for-tinnitus-relief.6226/

Thanks. I recall sharing/discussing the research document with you. I fully agree that it is good to see doctors participating directly in helping the various patient communities get better. Research is good, but it is only when the functional arm of medicine gets involved that a specific result is, or is not, achieved.

Also good to see that you are still checking in with the forum some two years later. Not many members like you.

Although you have answered almost everything in these stem cell threads would it be possible to contact you in the near future if I had some questions about the treatment given?

No problem. I will check in with the forum on and off (I have had a bit more time just now as it is the Easter break in Europe). Attached is the document I will be submitting to the medical director pertaining to drug delivery of the inner ear (a whole science in itself). Together with the restorative functions of MSCs in the inner ear, and also that of the four year old boy treated by Beike in 2009, I will be having a dialogue to see what can be done with stem cell technology of today.

Attached are all three documents. Please note for those who read this that, the document mentions how superior results pertaining to Menieres disease can be achieved with using a micro-catheter for supplying steroids.

Lastly, I want to make just a small point regarding timeline and how slowly things move forward in this world. I recall reading about the following study...

https://clinicaltrials.gov/ct2/show/NCT02038972

...back in 2012/3 when I was doing my own research on stem cells:

I just now checked the clinical trial information and even though the study is scheduled to be completed already, the results have not been published. In addition, that is now some 4 years ago (that the study was announced). This is a study enrolling just 10 patients. The procedure - which is all IV - is as a simple as picking up a carton-of-milk in the supermarket. How anyone manages display such a measure of ineptitude, I really do not know. This study should have been completed in no more than six months.