My Trip to Bangkok: Stem Cell Treatment [Comments]

[Aaron123]

I've wondered about the Cord Blood trials and have looked into it a bit. It looks like there are/were two trials. One - presumably the one mentioned in the press release - has been suspended:
https://clinicaltrials.gov/ct2/show/NCT01343394?term=stem+cell+hearing&rank=2
It was apparently a multi-center trial and it looks like the University of Texas IRB insisted on some changes that were apparently unable to be made: (though I also found another trial that was suspended because the PI in Texas - Dr. Timothy Foster - moved)

This study has suspended participant recruitment.
(UT-IRB insists on protocol design change -Not rel to any pt. safety/non-compliance-Recruiting halted at UT/MHHS but may resume at FLHosp for Children-OrlandoFL)

Apparently it has resumed at Florida Hospital for Children: https://clinicaltrials.gov/ct2/show/NCT02038972?term=stem+cell+hearing&rank=1

However, the last update was a year ago, and I can find nothing on-line about any updates. It isn't even mentioned on the Florida Hospital web site (that I can find).

 

[medal]

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.

Thanks again! May this dialogue be of positive outcome

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.

I don't have the knowledge regarding this matter.
Nonetheless extension of timeframe seems the general view unfortunately, "it will happen tomorrow" ...

 

[Reinier]

I read the PDF posted by @attheedgeofscience regarding "Current strategies for drug delivery to the inner ear"
https://www.tinnitustalk.com/attach...-for-drug-delivery-to-the-inner-ear-pdf.9802/
Especially chapter 4.2.2. nanoparticles I find very positive.
It still is via intratympanic administration, but I think using superparamagnetic iron oxidenanoparticle and magnetism to get better distribution of herapeutic agents looks very clever.

I will always be a little weary about syringes in my ears.
But wouldn't it be wonderful if in 10 or 15 years time that is what it takes to improve or even heal damaged cochleas.

 

[Mithrandir]

I try to find and read a lot of reports about stem cell treatment for ear problems on this site or somewhere else... I read some improvement but I've never read report with person who has H and tried stem cell... if someone read a story about that ?

 

[attheedgeofscience]

I previously mentioned in this thread the clinical trial involving cord blood stem cells for the treatment of congenital hearing loss in children. The trial was first mentioned in 2011 by CBR Systems. I have therefore wondered what the status is. I have the following feedback to share on that from a source:

My colleague let me know that you were asking about the current status of the acquired hearing loss trial in Florida with Dr. Baumgartner. At this point, the trial is fully enrolled and all of the children have been infused with their own stem cells. They will have final evaluations near the beginning of next year. After that, the results need to be analyzed and published so there should be results publicly available some time after that.

I also managed to learn - ahead of time of the publication - what the outcome of the trial has been. Unfortunately such information should not be shared on a public board. But I have now shared what I can (and know).

The trial registry can be seen here:

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

 

[another sean]

Does anyone know the contact information for the clinic @attheedgeofscience went to in Thailand or China for stem cell therapy? And which one was better? I would like to go. I just don't know who to contact.

Thanks

 

[lymebite]

Does anyone know the contact information for the clinic @attheedgeofscience went to in Thailand or China for stem cell therapy? And which one was better? I would like to go. I just don't know who to contact.

This post contains the contact information for the Bangkok clinic visited by both @attheedgeofscience and @FERNANDO GIL:

https://www.tinnitustalk.com/thread...aybe-we-can-know-more.3131/page-18#post-74662

ATEOS posted here that in hindsight he wished he had returned to Bangkok for his second round of stem cell therapy rather than visited the clinic in China:

https://www.tinnitustalk.com/thread...aybe-we-can-know-more.3131/page-17#post-64714

 

[Reinier]

I just don't know who to contact.

Did you also read article in a may 2012 back issue of hearing matters? You can order a back issue free of charge from:
shhhaust.org/hearing-matters-back-issues-data/
This article is an interesting read on stem cell therapies.

The clinic that was in the link "ihplus.com" does not mention hearing loss. At least I did not see it.
Beiki biotechnology has some case histories regarding hearing loss:beikebiotech.com/research/ But that is all I could find regarding hearing loss.

I filled out an application form on this website: the-stem-cell-center.com/component/content/article/39-deafness.html
They wrote back and they told me they had minimal success with NIHL.

I am interested in stem cell therapy too. I see so many different articles and stories regarding stem cell therapies, both positive and not so positive.

The story from Chloe Sohl is of course an amazing success story. But that is only one story where the patient claims a complete restoration. Also it is from 2009! Why not many more success stories after that amazing recovery?

Please let us know if you find something or decide to follow up on a therapy.
I am sure many people will be interested.

 

[Mithrandir]

@Reinier

We can imagine, people don't share informations in Internet. Maybe stem cells clinic/hospital have to do more communication around their success.
I read success of young Chloe Sohl, ATEOS, L. Francis...if you see other success stories ?

And for the technique, I don't know if there are progress since ATEOS's stem cell ?

 

[Leon909]

@Markku @Reinier

Fernando Gil also reported success with a treatment from the same clinic as the one that ATEOS went to in Bangkok.

https://www.tinnitustalk.com/threads/inner-ear-hair-cell-regeneration-—-maybe-we-can-know-more.3131/page-18#post-74662
https://www.tinnitustalk.com/thread...aybe-we-can-know-more.3131/page-17#post-64780

Fernando got a treatment that different from what ATEOS got. Fernando got an adipose stem cell treatment. Moreover he got two injections of cells near his ears. His improvement apparently was better than that of ATEOS. They both did LLLT before and after the stem cell treatment, so it's not possible to distinguish 100% where the improvements came from.

L. Francis' improvement was ca. 20 db. Read here post here (scroll down or search for "francis"). The blog also states that there are more people that got improved hearing from stem cell treatments.

http://deafdude1.blogspot.de/2010/0...howComment=1313134466431#c8776904231225236455

 

[Reinier]

What I do not understand is that most examples we see are more than 5 years old. 5 Years for something ground braking like hearing restoration, using stem cell therapies, should get more attention. (ATEOS is three years ago?)
I did another Google search for articles not older than one year. Most "hits" where refreshed old articles. Nothing new.
Many millions of people with hearing problems on this planet and only a handful are reporting (some sort) of hearing restoration. This is not yet good enough for me to decide taking out a mortgage or start saving. Too much money involved. Although it is not the amount of money, but the uncertainty if it works or not. It will take me a few years to save that amount of money, but It would be important enough for me do this.

We can imagine, people don't share informations in Internet. Maybe stem cells clinic/hospital have to do more

I would scream it from the rooftops! Something that cured or improved my hearing loss! It is such an important achievement. Clinics would use it as promotional material. I found very few stem cell clinics that include hearing loss.
The one I contacted stated they had little success using stem cells.

L. Francis' improvement was ca. 20 db.

That is 2010. If it was me I would want anther 20 dB improvement! He does mention this, but I could not find another (more recent)blog. There is now way of knowing if another therapy will give you another 20 dB. If it was only that straight forward.

Despite my inability to find more "proof" or scientific articles, I remain very interested in the concept and am not yet giving up hope. This is also why I contacted the stem cell clinic in America some weeks ago.

Fernando Gil also reported success with a treatment from the same clinic as the one that ATEOS went to in Bangkok.

By the way: I could not find this post. Did @FERNANDO GIL do stem cell? I can find LLLT, but not stem cell.

 

[Aaron123]

@Reinier

By the way: I could not find this post. Did @FERNANDO GIL do stem cell? I can find LLLT, but not stem cell.

Yes, he did. The posts start here:
https://www.tinnitustalk.com/thread...aybe-we-can-know-more.3131/page-16#post-63387

 

[Mithrandir]

25000€ is nothing compared to a life...25000€ is very expensive if it doesn't work...

 

[monacco]

Yes imagine if you pay this price and your T still there. double pain

 

[bill 112]

I wonder if it could work for H?Im not after a complete T cure,just a noticeable or big improvement is more than enough for me!Any stories involving anyone with H under going a Stemcell treatment?I would honestly pay any amount of money if it brought me relief

 

[Reinier]

Any stories involving anyone with H under going a Stemcell treatment?

Same with me. The hyperacusis makes me want to remain at home all the time. I can not think of a reason why stem cell therapy will not do anything for hyperacusis if it improves hearing loss and tinnitus. It al is regeneration of lost cells.
I realise this statement is perhaps to simply putt, but why wouldn't this principle apply here?

 

[bill 112]

Same with me. The hyperacusis makes me want to remain at home all the time. I can not think of a reason why stem cell therapy will not do anything for hyperacusis if it improves hearing loss and tinnitus. It al is regeneration of lost cells.
I realise this statement is perhaps to simply putt, but why wouldn't this principle apply here?[/QUOTE

I would imagine it would help Hyperacusis it's just nobody with H has attempted to try Stemcells from my knowledge.Id honestly keep my T for the rest of my life if I could get rid of my H,H is what keeps me housebound and scared

 

[Path Maker]

@bill 112
Round and Oval Window Reinforcement for the Treatment of Hyperacusis

Stephen, have you seen this thread? (Not sure if you have, and sorry it's off topic here). There is a doctor in Florida who seems to be having success, and I think it's still in trials. On one of the pages of this thread is a video about it. Hope I was able to link this correctly.

 

[Reinier]

Id honestly keep my T for the rest of my life if I could get rid of my H,H is what keeps me housebound and scared

Let just hope in a number of years we do not need to choose.

 

[bill 112]

@bill 112
Round and Oval Window Reinforcement for the Treatment of Hyperacusis

Stephen, have you seen this thread? (Not sure if you have, and sorry it's off topic here). There is a doctor in Florida who seems to be having success, and I think it's still in trials. On one of the pages of this thread is a video about it. Hope I was able to link this correctly.

Yes I seen that thread thanks Path Maker.Im just so scared now,I got T and H that got way better,then got worse out of nowhere from stupid little noises that I honestly thought were doing no damage.Now I have pain with sounds and I've read the horror stories and I'm deathly afraid that I'm heading that way

 

[Reinier]

"round and oval window reinforcement"
I have read that your hearing threshold will go up slightly. Which makes sense if you "stiffen" the oval and round window. That part is mechanical after all.

 

[bill 112]

Let just hope in a number of years we do not need to choose.

I hope so Reiner,anything that could eleviate this and stop it getting worse is fine by me.Just want a life again

 

[Reinier]

@bill 112 believe you me, I know exactly what you mean. My life is "on hold" too.
This is why we are such easy targets for scams.
Let just try to keep using our common sense and not fall for scams.

 

[Cillian]

Im pretty sure there will be some major breakthrough in T research eventually sooner rather then later let's keep the hope

 

[Reinier]

Im pretty sure there will be some major breakthrough in T research eventually sooner rather

Sometimes I do believe this to be the case, sometimes I don't. A lot of it depends on the "finds" on this forum.
But I do feel that the next couple of years could show some hopeful research.

 

[bill 112]

My H was without pain and it did eventually get a lot better.But then it slowly shifted into H with pain and it seems to be getting better and worse I don't really know anymore.

 

[Cillian]

Bill have you tried an ENT or going to Hospital and explain how bad your suffering?

 

[Alue]

Im pretty sure there will be some major breakthrough in T research eventually sooner rather then later let's keep the hope

The depressing thing is, even if there is a breakthrough, in 2016, it would be 2026 before it gets approval and reaches the general public.

 

[bill 112]

Bill have you tried an ENT or going to Hospital and explain how bad your suffering?

I've done it all Cillian,don't expect any miracles from the ENT department.All you get there are meds and bad advice

 

[Cillian]

I know bill not expecting much but one can hope mine was not noise induced that's my only hope