My Trip to Bangkok: Stem Cell Treatment [Comments]

[Aaron]

Ok, I understand him. But i am looking forward for updates. And i believe, his experiment will be sucesfull

Let's just wait and pray for him and all of us, hang in there buddy

 

[rainman]

Hello, i am new here. Sorry for my bad english, i hope you will understand me. One stem cell private clinic is in the Kyjev - Ukraine. I wrote them e-mail nearly year ago and they answered me (one hour after i sent email), that price is (was) 6500 eur. I am from Slovakia, and i have not free 6500 eur, but i will try it in the future (must earn and save money for it). But maybe one of you... ???

Interesting, i wonder have the Emcell prices dropped within a year? Just to get some perspective- does stem cell treatment prices drop at all? For 6500 these aren't probably embryonic or "the most potential" stem cells, otherwise it would be a steal. Emcell are close to us europeans but somehow it hasn't got any interest in stem cell pioneers from eu. They must of lack something, maybe experience with hearing disorders?

Too bad that some devils advocates closed this wonderful blog. Cant really blame the guy, but any info how it all rolled out, any at all in the future, will be beneficial for sure. Take care Attheedge, this journey really was an eye opener!

 

[Johno]

Interesting, i wonder have the Emcell prices dropped within a year? Just to get some perspective- does stem cell treatment prices drop at all? For 6500 these aren't probably embryonic or "the most potential" stem cells, otherwise it would be a steal. Emcell are close to us europeans but somehow it hasn't got any interest in stem cell pioneers from eu. They must of lack something, maybe experience with hearing disorders?

Too bad that some devils advocates closed this wonderful blog. Cant really blame the guy, but any info how it all rolled out, any at all in the future, will be beneficial for sure. Take care Attheedge, this journey really was an eye opener!

I try find this email, but i can not guarantee success, cause was year ago. But, there is no problem sent another mail there I remember, price was 6500 euro.

 

[Eric N]

This is horrible, I was really waiting on the update from this treatment, I can't believe he would leave the rest of us in the dark just because of one member:S

 

[Johno]

I think, Attheedgeofscience give update to us He is little bit angry for now, but he know, he is one of the last hope for us and pioneer. And we are proud of him, because he has courage to try this not very safe experiment and spend his own money for it.

 

[Johno]

I did not found email, that I sent to Emcell (22 March 2013), but i asked them on tinnitus and hearing loss treatment. And they answered me:

Dear Mr. Mrva,
Thank you for contacting us.

In order to consider the possibility of stem cell therapy in your case we would ask you to fill in the forms attached in detail and provide us with all medical reports and the results of the laboratory and instrumental investigations available, including the latest ones dated 2013, indicate us the past history of the disease, treatment scheme in the past and at present.


The price of the treatment is 6 500 EUR.



We will be waiting for the medical information.

Sincerely yours,
Eugeniya Syatkina


PA, M.A.

Cell Therapy Center EmCell

37 A Syretska Street, Office 200

Kiev 04073

UKRAINE


Phone: +38 044 223 28 95

Fax: +38 044 468 80 29

Cell: +38 067 236 27 61

E-mail: infocenter@emcell.com


www.emcell.com


They sent me some documents too. I upload those documents on ulozto.sk. If you will, you can download them on this adress: http://ulozto.sk/xhuqKmYt/emcell-documents-zip

Word "Stiahnuť" means download in my native language

 

[Vkis]

dear friends, i want to ask you not to blame the member who insulted atheageofsience/ He is only the man who lost hope and probably atheageofsience near to loose hope and that's the two sides of one problem/ We are all in one boat/

 

[Johno]

dear friends, i want to ask you not to blame the member who insulted atheageofsience/ He is only the man who lost hope and probably atheageofsience near to loose hope and that's the two sides of one problem/ We are all in one boat/

Yes, you re right. We all are on same boat. I nearly lost my hope too, Attheedgeofscience was small, but bright light in the darkness. And still is.

 

[nills]

6500 euro is n`t too expensive if it helps! ... it`s worth it. I hope the doctors and companies get there act together and not try to milk us too much like it seems they are trying to do.

 

[Johno]

I wonder, if hearing treshold of Attheedgeofscience was improved too... but logical answer is: yes (???)

 

[Stina]

Yes, you re right. We all are on same boat. I nearly lost my hope too, Attheedgeofscience was small, but bright light in the darkness. And still is.

I believe if there are results other patients will know about it as well Living in the future suck though

 

[Jason White]

Who did the audiograms that confirm your hearing loss is being reversed? If it's the same people doing the treatment, I would be highly suspect.

I normally don't comment on people's entries as I have no interest in starting endless pointless debates. However, as my integrity seems to be questioned, I will say that I never claimed Dr. wildens's therapy to work for tinnitus, but for hearing loss (for which it absolutely does). My audiograms confirm this. Yes, yes, everybody claims that the laser cannot reach the inner ear - how is it then that the laser I have at home can shine through the palm of my hand?

The journal I keep is factual and objective. No more no less.

Perhaps, you should consider finding yourself another forum to join.

 

[Vkis]

Who did the audiograms that confirm your hearing loss is being reversed? If it's the same people doing the treatment, I would be highly suspect.

no its diferent people/ he made treatment at bangkok and audiogram in germany/
i also confirm that hearing can be reversed slitely in the first year/
i also had improvement for 5-10 db

 

[makoda]

Attheedgeofscience if you see this please try to think of those of us who are so positively waiting to hear back from you. You are the only hope that a lot of us have had who have dealt with this for a lifetime. I hope to hear from you and would appreciate the contact info for the places you went in a private message.

Thank you

 

[seal]

Who did the audiograms that confirm your hearing loss is being reversed? If it's the same people doing the treatment, I would be highly suspect.

It was Dr. Wilden in Germany, who does the low laser therapy and that's his proof for that his treatment works. Rumor has it that dr. Wildens audiograms are not quite so accurate ...

 

[Salt]

Hi,

I just came across these threads about stem cell research and found it incredibly interesting. Although I don't have the resources to seek out one of these treatments, I hope that one day I will, and at that time the treatment will be less expensive.

Its a shame that someone had to ruin the experience of our one pioneer in this treatment, and thus everyone else's chance to hear about the results of Attheedgeofscience's 2nd treatment. However from his last post he indicated there were a select few that were able to reach him and post updates if they felt inclined.

Since this thread has been dead for almost 6 months, maybe one of these members might have something to say about it? I'm sure I'm not the only one here that would appreciate any changes he has noticed.

Sincerely,

Salt

 

[Sen]

5-10db is the margin of error in an audiogram. A 5-10db difference on an audiogram is not good evidence of improvement or worsening.

 

[Cor]

I wonder if attheedge still recommends going to a stemcell clinic for tinnitus relief. Anyone hear anything from him regarding this topic? I am interested in pursuing that option. Interestingly i also have a long term achilles tendon injury due to marathon training, like attheedge

 

[attheedgeofscience]

I got the following message from a member of TT (in an offline discussion). I have decided to respond to the post by letting the person be anonymous - this way other members may benefit from the response too. I will respond to the message directly below this post.

Hello at the edge of science, I'm very interested in hearing loss improvement as I have a substantial hearing loss. My loss is mainly in the range of human speech with up to a 50% loss in that region in my right ear and my left ear isn't so great either. My audiogram is pretty interesting and looks like something you might see in the Grand Canyon. I believe it's genetic but it didn't begin to take a toll on me until my late 40s. I try to follow the research forum here to keep up with advances in stem cell therapy and other therapies. I saw that you went to Bangkok for treatment. I'd love to know the details. How much did it cost, how much did your hearing improve, etc. As opposed to me, I know your loss would not have been considered abnormal by most audiologists from doing some quick back reading here. Believe it or not, I'd take tinnitus over my hearing loss any day if I had the choice but lucky me, I have plenty of both. Of course, I'd love for both to improve!!! I'm far from wealthy, more like "getting by" so I don't know if stem cell treatment will ever be an option for me unless I were to get in a trial. Like I just said, I don't mean to go off topic in this thread. I just perked up when I saw you mention hearing loss and want to know more about your experience. I'm very optimistic about cures and treatments for tinnitus and hearing loss. I believe they are coming, mostly based on my artistic intuition not my science skills (of which I have very little aptitude for). Besides, I think intuition is greatly under valued in the West.

 

[attheedgeofscience]

The field of otology is currently going through the same "boom"-phase that the field of ophthalmology went through in the past decade or so. Right now there isn't really any inner ear therapies available to the mass market. Inner ear therapies fall broadly into two groups: tinnitus elimination and hearing loss recovery. [I recently did a market analysis tracking down financial stats, clinical trial data, and company information of all the major players in the otology market segment - I will attach it as a pdf file again below; there's some pretty helpful information in it...]

Since there aren't really any therapies available at the moment, what can a person do in such a situation - if faced with hearing loss and/or tinnitus? As I see it, there are two options:

1) Use non-standard treatment options within the field of regenerative medicine (LLLT and stem cells; possibly HIFU).
2) Get involved in clinical trials (the market overview I am providing below is very helpful in that respect - it contains everything you need to know - there is more going on than many people may realize).

Option #1

If a person decides to go for option #1, then there are some "problems" with that approach. The problems are that the therapy is unproven - meaning it may or may not work as intended, and there is also a financial aspect (stem cell treatments do not exactly come with a "money back guarantee" for the typical cost of about USD 25.000,-). To what extent regenerative therapies work is something I have discussed at great length in the following posts:

https://www.tinnitustalk.com/posts/47995/
https://www.tinnitustalk.com/posts/48004/
https://www.tinnitustalk.com/posts/48089/
https://www.tinnitustalk.com/posts/48131/
https://www.tinnitustalk.com/posts/48135/
https://www.tinnitustalk.com/posts/48513/
https://www.tinnitustalk.com/posts/49742/
https://www.tinnitustalk.com/posts/49936/
https://www.tinnitustalk.com/posts/50074/
https://www.tinnitustalk.com/posts/50081/
https://www.tinnitustalk.com/posts/50084/

Reading through the posts - which contain my post therapy reflections on regenerative medicine - will enable a person to make a decision by/for themselves. I cannot make a decision for other people. Similarly, I cannot tell you about the success rate, because success rates are difficult to obtain reliably within the field of regenerative medicine. But the threads above contain at least some "hints" as to what a person can potentially expect from the various therapies.

The following link is also useful in that respect: www.c-a-network.com/pdfs/240186%20SHHH.pdf

(Pages 6-9 in the pdf document above discusses stem cells in relation to hearing loss for people who have actually done it...! And it contains two audiogram done before/after for one of those pioneers, L Francis - see page 9).

I have also posted before/after audiograms in my introduction: www.tinnitustalk.com/threads/my-introduction.1862/#post-39035

The following links are helpful in relation to finding stem cell treatment centres:

Stem Cells

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

Stem cell treatments use adult stem cells (not embryonic stem cells). Embryonic stem cells are only used for research. Hence there are no moral issues in getting a stem cell treatment.

LLLT

www.dr-wilden.de
www.laserklinikken.com


Option #2

Getting involved in clinical trials is a chance to be amongst the first people in the world to receive a new treatment form or drug - and free of charge.

In approaching a clinical trial, a potential candidate should be aware of the following stages/phases:

Preclinical: drug is still in development phase (not ready for testing on human beings)
Phase I: safety evaluation of drug (on human beings) using sub-clinical dosages.
Phase II: efficacy evaluation of drug (on human beings) using various dosages (incl. placebo for double-blind studies).
Phase III: same as phase II, but using a larger group of patients in order to establish a more reliable estimate of the efficacy of the drug.
Phase IV + NDA follows thereafter...

Given the above, it is therefore not beneficial to enter a clinical trial before phase II has begun. But even better to wait for phase III (= less risk).

The draw-back with a clinical trial is that there is a "risk" of getting the placebo. And there is also a risk of developing unknown side-effects from the treatment. But it is free-of-charge (a big advantage to the price tag of the many thousands of dollars often involved in other self-chosen experimental therapies such as stem cells...)

For people who are interested in clinical trials in relation to tinnitus and hearing loss, the pdf document below is a good starting point for keeping track of what is going on at the moment. I would advise the "serious candidate" to contact the pharmaceutical companies directly (in order to learn more and keep yourself updated). But, only if you are serious about it - don't waste their time "for nothing" (these are often small companies with limited manpower; and often it is the CEO him- or her-self responding to e-mails and answering phone calls).

Definition double-blind: neither the patient nor the doctor knows if the real drug or the placebo is being administered during treatment (this in order to guarantee objectivity of results).
Definition NDA: New Drug Application.

A general note about hearing loss therapies currently being developed. The drugs being developed are typically aimed at patients with severe hearing loss. After treatment, candidates can expect to have their hearing threshold restored to about 20-25db (or just shy of stage I hearing loss). Hearing loss will not be fully restored. Full restoration of hearing loss will not happen until many years from now (when some yet-to-be developed embryonic stem cell therapy has been researched).

 

[sgal]

Thank you attheedgeofscience for all the amazing information. It's a lot to take in so I copied much of it into my HearingLoss and Tinnitus folders. Unless my financial situation changed dramatically, I need to keep my eye on clinical trials. A 20 to 25 db increase would make a world of difference in my case but at present, they probably wouldn't consider my loss great effort to be included in a trial. All the same, I want to start tracking these companies. I'm in the US and I know that sometimes you must be in a certain radius from the clinic to apply as a candidate. If you hear of anything going on in my neck of the woods, would you keep me in mind? Thank you for the time you spent putting this information together all in one place.

 

[attheedgeofscience]

Thank you attheedgeofscience for all the amazing information.

No problem.

It's a lot to take in

Agreed. But at least there now exists some practical/tangible information about stem cells and hearing loss. When I started looking into stem cells at around this time last year, there essentially was zero information available (there still isn't - except for the stuff I have posted on this site and few "bits and pieces" elsewhere). I had to spend an entire month (or two) tracking down the precious little information I could find on the Internet, liasing with stem cell clinics around the world, and reading up on theoretical stem cell literature.

A 20 to 25 db increase would make a world of difference in my case

Please note that restoring hearing threshold to 20-25db is not the same as an improvment in hearing of 20-25db. When hearing threshold is restored to about 25db, it means that the hearing capability of the person is now at 25db (across all frequencies) - regardless of whatever hearing loss the person had before (assuming hearing loss was worse than 25db, of course...).

The reason hearing loss is not fully restored is because re-grown stereocilia are not of the same pristine quality as the ones we are born with. This can be visually observed in the following diagram (bottom right hand photo):

but at present, they probably wouldn't consider my loss great effort to be included in a trial.

You never know until you contacted them...

If you hear of anything going on in my neck of the woods, would you keep me in mind?

Will do. But at some point, I probably will be leaving this site. It could be a while before we see the first clinical trials starting. Right now GenVec is probably the best bet - and they also have the best financial backing. And there is also a shift in the market dynamics. Otology therapies is currently virgin territory - but suddenly we are seeing a number of companies who all want a "slice of the pie". Which of course means that there is increased competition. And hence increased pressure in getting the drugs to the market. And that's good for the consumer. Don't tell me capitalism doesn't work...

Attached is the very latest presentation from GenVec (from June this year).

[I also noticed the TT-links I provided yesterday did not work (in the post above); they do now.]

 

[attheedgeofscience]

Since the topic of hearing loss recovery can be confusing, I think it is helpful to make a few points of clarification regarding the various therapies being developed.

1. Stem cells (adult vs embryonic)
2. Cold laser therapy
3. Gene/protein therapy


1. Stem cells

Adult Mesenchymal stem cells cannot regenerate stereocilia that have been completely destroyed; only embryonic stem cells would have such a capability - but embryonic stem cell therapy is not yet ready for use in human beings (not even close). What adult stem cells can do, is to repair damage done to body tissue (including damage in the inner ear). So long as the stereocilia is not completely damaged, regeneration can take place (to some extent). This is why stem cells appear to work - again to some extent (and depending on the cause of hearing loss ie. congenital, noise-induced, ototoxicity-induced, auto-immunity-induced, disease-induced). It should be noted that while current stem cell therapy using adult stem cells has been proven to be effective for certain conditions such as auto-immune disorders and arthritis, the use of stem cells for hearing loss is still (very) experimental. Below are two links to information about stem clinical trials for children with congenital hearing loss:

http://www.cordblood.com/stem-cell-research/cord-blood-research/hearing-loss
http://www.cordblood.com/press-release/hearing-loss

The advantage with this therapy is that it is already available - although finding a stem cell treatment centre willing to perform the procedure can be difficult (because it is experimental).

Probably the biggest problem with this therapy is the ineffective way the stem cells are delivered. Stem cells cannot be directly injected into the cochlea. Instead these must be delivered as IV or spinal cord. Most of the stem cells will therefore not end up at the desired location. When I was in China for my 2nd stem cell treatment, the doctors there did discuss the possibility of trying locate a vein in the neck which might ensure a more direct delivery of stem cells to the inner ear. However those plans never materialized for other reasons.

2. Cold laser therapy

Cold laser therapy makes use of the biological cell energy principle: if a cell is supplied with more energy than it consumes, it will over time begin to regenerate. Unlike eg. skin cells - which can be replaced - we are born with a limited number of nerve cells. If a nerve cell has been damaged, it cannot be replaced with a new nerve cell. At best, it is only possible to repair the damaged nerve cell. This is the biological process that laser therapy can help facilitate (by supplying damaged cells with abundant energy in the form of laser light). Usually red or infrared wavelengths are used because they have stronger tissue-penetration depths.

The advantage of cold laser therapy is that it is already available today.

3. Gene/protein therapy

These therapies are still in the preclinical phase. They work by suppressing/altering a biological mechanism preventing inner ear hair cell regrowth. However, note that regrown stereocilia are not of the same pristine quality as the ones we are born with. Hearing threshold will therefore typically start at around 20-25db.

 

[sgal]

Hi again attheedgeofscience. Thank you for the clarifications and additional information. I've made copies of everything for my files so I can read through it as time allows. I read the Australian SHHH link and was very impressed by the audiogram of the man who went to Malaysia at Cyrocord for stem cell treatment. His story is very interesting. His improvement as seen on his audiogram might not look like a lot to most people but I was thinking, whoa, that would make a big difference! I wonder what the cost of his treatment was. All in all, I think there are some amazing things going on in the field of hearing loss. Even if I had all the time in the world, I wouldn't have the science background or aptitude to do the research that you've done. Thank you for sharing.

 

[TDCC]

God Bless,
thank you and good luck!

 

[Cor]

Hi @attheedgeofscience , i was away for a week so couldnt respond. Very useful information. I will read all the posts you recommended. Do you feel LLLT should be tried before even remotely considering stem cell treatment?

Im only in the first 6 months of tinnitus (with some minor hearing loss at 4khz that isnt problematic in daily life, I didnt even know I had it) but it's getting progressively louder, and I cant figure out why, and if there will be an end to the increase. Especially the last part is kind of a scary thought. I would like to start looking into all my options. I am in the fortunate position to be able to afford most treatments without too much financial worry.

I am currently on benzos (xanax) but I really dont like it, as I feel it may be contributing to the increase. I cant find any reference to that in literature though.

Right now im actively pursuing:

- audiological centre visit so I can be outfitted with a hearing/masking aid. My local hearing aid store claims that had some good results with tinnitus by simply providing hearing aids.

- psychological help (anxiety mostly) and anxiety meds

- possibly visit to german clinic for tests (in NL you get very basic tests) and maybe infusion treatment, although it's getting a bit late for that. But not tried is definitely not going to help.

What is really weird for me is that my tinnitus can be very quiet in the evening, but once I lay down in bed, a few hours later its screaming. Every night. This to me suggests some other element involved than just damaged hairs and a brain trying to cope with that.

 

[FERNANDO GIL]

Hi @attheedgeofscience , i was away for a week so couldnt respond. Very useful information. I will read all the posts you recommended. Do you feel LLLT should be tried before even remotely considering stem cell treatment?

Im only in the first 6 months of tinnitus (with some minor hearing loss at 4khz that isnt problematic in daily life, I didnt even know I had it) but it's getting progressively louder, and I cant figure out why, and if there will be an end to the increase. Especially the last part is kind of a scary thought. I would like to start looking into all my options. I am in the fortunate position to be able to afford most treatments without too much financial worry.

I am currently on benzos (xanax) but I really dont like it, as I feel it may be contributing to the increase. I cant find any reference to that in literature though.

Right now im actively pursuing:

- audiological centre visit so I can be outfitted with a hearing/masking aid. My local hearing aid store claims that had some good results with tinnitus by simply providing hearing aids.

- psychological help (anxiety mostly) and anxiety meds

- possibly visit to german clinic for tests (in NL you get very basic tests) and maybe infusion treatment, although it's getting a bit late for that. But not tried is definitely not going to help.

What is really weird for me is that my tinnitus can be very quiet in the evening, but once I lay down in bed, a few hours later its screaming. Every night. This to me suggests some other element involved than just damaged hairs and a brain trying to cope with that.

Hi
Did you make a audiograme all the way to the 16000 Hz?
If not, you should do it. To have a full idea how your hear is it.
Hope for the best.

 

[Cor]

My hearing seems to be really bad above 11khz but they didnt test that in an audiogram. I can test it myself with a tone generator. Above 11khz I dont hear the tones anymore. No idea how I got such bad hearing, and to be honest, i never realised this until I had it tested. Doesnt bother me in daily life.

 

[Cor]

Interesting, my brother has pretty much the exact same hearing loss that I have, only mirrored.

 

[FERNANDO GIL]

My hearing seems to be really bad above 11khz but they didnt test that in an audiogram. I can test it myself with a tone generator. Above 11khz I dont hear the tones anymore. No idea how I got such bad hearing, and to be honest, i never realised this until I had it tested. Doesnt bother me in daily life.

Not trying to be ATEOS, but try to realize a full audigrame. at 16 000 hz. That way anything in future you will have a base to see how you hearing was and will be at end of any treatment. My first one was only till 8 Mhz, and the I made one till 16 000 HZ. I realize my ear was bad as well stating the 11 000hz. see my post.

https://www.tinnitustalk.com/thread...aybe-we-can-know-more.3131/page-10#post-51063

That is important to have.
All the best.
Fernando