My Trip to Bangkok: Stem Cell Treatment [Comments]

[another sean]

Has anyone looked into Novastem for stem cell treatment? I was trying to find something closer than Thailand, being a US resident.

http://www.novastem.mx

 

[Leon909]

@whiskeykonteq @bill 112

I'm also in touch with a few clinics. We should discuss more on our experiences with the clinics so that we can all make the best informed decisions.

Regarding Stemcells21, these are my pros and cons:
+ They treated two people with (partial) success that we know of and
+ They are transparent about pricing and treatments on their website
+ They offer a number of additional treatments, such as peptide injections (a friend of mine who is a doctor told me that she agrees that peptide injections are generally useful)
+ They seemingly offer innovative treatments, such as injections around the ear
- At least some of their reviews on facebook seem to be fake
- They are not very transparent about how many people they treated and what the effects have been
- They seem to propose rather similar treatment plan for every condition described on their website
- It kind of feels like they really want to sell to you, which at times makes you question whether their motivation to sell stands in the way of recommend the most useful medical treatments.

In my research I'm also in touch with a clinic in India and I talked with http://www.frischzellen.de/ in Germany. Another stem cell clinic in Germany simply replied to me saying that hearing loss cannot be treated with stem cells (they only offer adipose treatments with the liposuction).

I have loads more information since I researched a lot of scientific papers. It's just way too much unstructured information to share all of it at this point. Cheers.

 

[Sasja]

... @Bobby B every single audiogram I've done since onset has returned perfect despite my noise related worsening,they simply prove nothing in regards to T and hidden hearing loss.As I've stated before and I will sing this till the day I die and that's the problem lies beneath the haircell i.e synapse/neuron/auditory nerve fibres etc and I'm by no means alone on this,the sooner we get over the haircell concept the better in my opinion. ...

I follow you on this, am in the same situation...

 

[grate_biff]

Wow. This tread is by far the most interesting and promising I have ever followed here on TT. I love all you guys who are so knowledgeable and investigative in your comments here. I wish I had some intelligent things to add, but all I can do is really to be positive to this kind of treatment and join all of us in a hoping for a fast development and scientific understanding on how to use SC for T. I relly believe we are close or even there allready.

@monacco, You are now my favorite person in the world and I will follow your every post with great interest regarding your procedure in Thailand.

Thank you all!

 

[whiskeykonteq]

@Leon909 what other clinic in Germany have you contacted ? Is that maybe one that is doing knee stem cells injections where Kobe etc undergo treatment ?

- They are not very transparent about how many people they treated and what the effects have been

Yes, that's why I added them yesterday on Facebook and tried to get some info. Apparently they had 20 tinnitus patients and some of them have/had tinnitus due to NIHL / acoustic trauma. I'm still waiting that they send me some cases / and/or any kind of statistic they have. Also they recommend UMB-MSC as the cells are younger and can repair more damage. Here is my Facebook transcript with them:

Stem Cells 21: Hi there, how may I help you

me: hi. i'm suffering from unilateral tinnitus and would like to try stem cells treatment. i already sent evaluation form

Stem Cells 21: Yes we do offer Cell therapy for tinnitus that may lead to hearing loss, may I please have your email address and contact info?

me: but i was wondering - can you send me some cases where you have successfully treated tinnitus ?
i know about 2 cases: one Jakob Hanses from Denmark / Germany
and one from Portugal (Fernando Gil). my email address is: xyz@gmail.com. name: xyz

Stem Cells 21: I wanted to give you more email addresses from our treated patients due to confidentiality issues, but will try to provide you those tomorrow. Thanks for the email

me: sure. but do you know about cases where you have successfully treated noise induced tinnitus
both Jakob Hanses and Fernando Gil had tinnitus due to head trauma / unknown cause

Stem Cells 21: Yes, we do have patients who treated for loud noise cause, are you in hearing aid. For how long you're suffering for tinnitus now?

me: i'm not wearing hearing aid, i have hearing loss only in high frequencies (above 8kHz). i'm suffering from 18th February 2016. on left ear only ... right ear is fine. that is great news that you have treated noise induced tinnitus. can i ask what was outcome ?

Stem Cells 21: Our cell Therapy will help to reduce the frequency in your affected area as we will be doing treatment plan for 5 to 7 days in a daily basis which includes 2x stem cells IV infusion and 2x local injections plus supportive treatments like medical laser to both ears, Oxyven therapy, peptide and enzyme injections and supplements for hearing

me: ok. with umbilical cord MSC or adipose MSC ?

Stem Cells 21: We strongly recommend Purified MSC for it is young cells, more powerful. The higher amount of cells the higher impact for the outcome.
And also, it depends on our patients preference, with the Adipose cells there will future follow ups as we do banking for 3 to 5 batches for boosting in months 3,6,12

me: ok. can you tell me how much tinnitus patients did you had ? and what is success rate?

Stem Cells 21: We treated over 20 patients for tinnitus and they keep coming back for follow ups, f or boosting , to lower frequencies and for wholly approach as an individual

me: did you eliminated completely tinnitus for some of them ?

Stem Cells 21: We are also focusing for other diseases such as degenerative conditions, ortho, heart and lung problems, neuro and etc

me: ok, but i'm interested only in tinnitus

Stem Cells 21: All of our patients are happy with the result, the outcome will depending on your body's response and severity of your condition. Rest assured you that you will see the difference after 6 to 8 weeks time

me: ok. do you have some cases that you can share ?

Stem Cells 21: I will ask their permission again tomorrow as we don't want to divulge their personal information.

me: no personal informations, i'm not interested in name, country, age etc … i'm just interested in results. how bad was tinnitus. and how it improved. and what was the cause of tinnitus. case studies
and yes - i know of 2 patients - Jakob Hansen and Fernando Gil, so don't ask them
because they already told me
and i know one more from Monacco is going on 11th of July
for tinnitus too

Stem Cells 21: Yes sir,

me: so you will send me some cases via email ?

Stem Cells 21: Will do

me: ok, thanks!

 

[Sailboardman]

May be because in US there are a lot of hearing aids companies are you understanding me?

But most hearing aids are made in China? But then again, what isn't made in China?

 

[Alue]

But most hearing aids are made in China? But then again, what isn't made in China?

O US companies make a lot of money on the price markup. Just like anything else medical related.

 

[bill 112]

Let's look at this another way,take someone like me with zero hearing loss and wants to be treated by Stemcells.

Now currently haircell regeneration hasn't happened BUT if my theory as to why T and H arise from trauma then it shouldn't matter and here's why.

Beneath the haircell as many of you know is the synapse and the auditory nerve fibre which is what I believe is responsible for T and H.After trauma these fibres get damaged or destroyed and there is currently no way to test for these fibres yet,not accurately at least.
So now that we're talking about the auditory nerve where does that fall in?Neuropathy is the answer so now we look up studies involving Stemcells to treat neuropathies of all kinds to get a general idea of how well the outcome was and on that front the news is encouraging,very encouraging in fact.(NCBI)

So this is good news right?Well not exactly because apparently it's a well known fact that people are 10 times more likely to get the placebo effect if it's an injection based treatment which of course a Stemcell treatment usually is so that in itself is a concern.The saving grace is that these studies were placebo controlled studies so that gives another boost of confidence in getting such a procedure done.

Either way I'm going to do my homework before I go ahead with my treatment,I want the best possible outcome I can get!

 

[Ears Hurt]

Yes, that's why I added them yesterday on Facebook and tried to get some info. Apparently they had 20 tinnitus patients and some of them have/had tinnitus due to NIHL / acoustic trauma. I'm still waiting that they send me some cases / and/or any kind of statistic they have. Also they recommend UMB-MSC as the cells are younger and can repair more damage. Here is my Facebook transcript with them:

I get the impression they don't speak English well or they are just scripted on what they can say.

 

[Ears Hurt]

Has anyone looked into Novastem for stem cell treatment? I was trying to find something closer than Thailand, being a US resident.

http://www.novastem.mx

@another sean I sent them a request for information. There is a new stem cell clinic in Miami, Florida. I've put an inquiry into them also. I figure they are located in the greatest location of the aging population. http://www.stemcellmia.com

My guess is the more people that inquire about hearing loss and tinnitus; the more likely they will try to treat it or look for a way.

 

[Leon909]

@Leon909 what other clinic in Germany have you contacted ? Is that maybe one that is doing knee stem cells injections where Kobe etc undergo treatment ?

I contacted one in Potsdam called Klinik Sanssouci. They said hearing loss cannot be treated with stem cells. They focus on plastic surgery. I also contacted another one called ANOVA Institute for Regenerative Medicine two days ago. No reply so far.

 

[Reinier]

it's a well known fact that people are 10 times more likely to get the placebo effect if it's an injection based treatment which of course a Stemcell treatment usually is so that in itself is a concern.

If it is placebo effect should this effect/improvement not dissipate after time?

 

[whiskeykonteq]

Let's look at this another way,take someone like me with zero hearing loss and wants to be treated by Stemcells.

Now currently haircell regeneration hasn't happened BUT if my theory as to why T and H arise from trauma then it shouldn't matter and here's why.

Beneath the haircell as many of you know is the synapse and the auditory nerve fibre which is what I believe is responsible for T and H.After trauma these fibres get damaged or destroyed and there is currently no way to test for these fibres yet,not accurately at least.
So now that we're talking about the auditory nerve where does that fall in?Neuropathy is the answer so now we look up studies involving Stemcells to treat neuropathies of all kinds to get a general idea of how well the outcome was and on that front the news is encouraging,very encouraging in fact.(NCBI)

So this is good news right?Well not exactly because apparently it's a well known fact that people are 10 times more likely to get the placebo effect if it's an injection based treatment which of course a Stemcell treatment usually is so that in itself is a concern.The saving grace is that these studies were placebo controlled studies so that gives another boost of confidence in getting such a procedure done.

Either way I'm going to do my homework before I go ahead with my treatment,I want the best possible outcome I can get!

Yes, that's the latest theory regarding tinnitus, according to Charles M. Liberman ... cochlear synaptopathy. Again, I tried to investigate and see if there is scientific basis in stem cell treatment.

According to this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4842978/ (basically neurotrophin-3 delivered to cochlea via round window within 24 hours after noise induced hearing loss, can reverse synaptopathy process) and I found few studies, among them e.g.: http://www.ncbi.nlm.nih.gov/pubmed/19885863 that rats with I.V. transplanted human MSC expressed neurotrophin and other (neuro) growth factors. So hopefully, after UMB-MSC treatment, both OHC will be regenerated and neurotrophin-3 will be expressed which again will hopefully heal cochlear synaptopathy and eliminate tinnitus.

Or at least that's my hope ;-) My tinnitus is fluctuating, some days I can hear it even when I'm driving with open windows, and some days It's more quiet and I have to search for it. So I'm hoping that stem cell might work in my case (I feel like it's on the edge - just a little bit more "boost" from stem cells and it will go away ;-)

Cheers

 

[bill 112]

If it is placebo effect should this effect/improvement not dissipate after time?

That's my thinking behind it too,eventually the placebo effect should wear off and it's true effect should be known.

 

[Ears Hurt]

I just go a response from this place. They don't treat hearing related issues with stem cells.

https://stemgenex.com/

 

[bill 112]

Yes, that's the latest theory regarding tinnitus, according to Charles M. Liberman ... cochlear synaptopathy. Again, I tried to investigate and see if there is scientific basis in stem cell treatment.

According to this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4842978/ (basically neurotrophin-3 delivered to cochlea via round window within 24 hours after noise induced hearing loss, can reverse synaptopathy process) and I found few studies, among them e.g.: http://www.ncbi.nlm.nih.gov/pubmed/19885863 that rats with I.V. transplanted human MSC expressed neurotrophin and other (neuro) growth factors. So hopefully, after UMB-MSC treatment, both OHC will be regenerated and neurotrophin-3 will be expressed which again will hopefully heal cochlear synaptopathy and eliminate tinnitus.

Or at least that's my hope ;-) My tinnitus is fluctuating, some days I can hear it even when I'm driving with open windows, and some days It's more quiet and I have to search for it. So I'm hoping that stem cell might work in my case (I feel like it's on the edge - just a little bit more "boost" from stem cells and it will go away ;-)

Cheers

I wonder if Neurotrophin placed into the ear would help months after exposure?From what I can find no one has tried it yet.

 

[Alue]

Yes, that's the latest theory regarding tinnitus, according to Charles M. Liberman ... cochlear synaptopathy. Again, I tried to investigate and see if there is scientific basis in stem cell treatment.

According to this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4842978/ (basically neurotrophin-3 delivered to cochlea via round window within 24 hours after noise induced hearing loss, can reverse synaptopathy process) and I found few studies, among them e.g.: http://www.ncbi.nlm.nih.gov/pubmed/19885863 that rats with I.V. transplanted human MSC expressed neurotrophin and other (neuro) growth factors. So hopefully, after UMB-MSC treatment, both OHC will be regenerated and neurotrophin-3 will be expressed which again will hopefully heal cochlear synaptopathy and eliminate tinnitus.

Or at least that's my hope ;-) My tinnitus is fluctuating, some days I can hear it even when I'm driving with open windows, and some days It's more quiet and I have to search for it. So I'm hoping that stem cell might work in my case (I feel like it's on the edge - just a little bit more "boost" from stem cells and it will go away ;-)

Cheers

I agree with the Cochlear nerve degeneration theory, it seems to fit my case well too.

You are lucky if your tinnitus is fluctuating and it's only been a few months for you. Those who fluctuate a lot early on seem to improve. Those that have constant loud tinnitus that never fluctuates (like me) don't seem to get better. I can hear it driving with the windows down or in an airplane, I haven't had a quiet day since onset.

 

[whiskeykonteq]

I wonder if Neurotrophin placed into the ear would help months after exposure?From what I can find no one has tried it yet.

no, but there are some references in this paragraph in Round-window delivery of neurotrophin 3 regenerates cochlear synapses after acoustic overexposure study:

(emphasis are mine):

In the adult ear, cochlear nerve fibers often degenerate after cochlear insult, including noise damage and ototoxic antibiotics6. This degeneration occurs with a variable time course, depending on the nature and severity of the insult; however, the unmyelinated terminal dendrites within the organ of Corti disappear first (within hours to days), followed more slowly by the peripheral axons in the osseous spiral lamina (within days to weeks), and, only on a much slower time course, the cell bodies in the spiral ganglion and their central axons that compose the cochlear nerve (over weeks to months and longer)7,8,9. Given that cochlear implants can continue to provide useful hearing for years after hair cell loss, these long-surviving neurons must remain electrically excitable and appropriately connected to their central targets10. Thus, in many types of sensorineural hearing loss, there is a long therapeutic window wherein a treatment to elicit neurite outgrowth could reconnect silenced cochlear ganglion cells with hair cells, and thereby potentially improve speech in noise performance and reduce tinnitus.

So, looks like as sooner as better, but still there are months within we could repair cochlear synapses (probably to some extent).

Cheers

 

[whiskeykonteq]

I agree with the Cochlear nerve degeneration theory, it seems to fit my case well too.

You are lucky if your tinnitus is fluctuating and it's only been a few months for you. Those who fluctuate a lot early on seem to improve. Those that have constant loud tinnitus that never fluctuates (like me) don't seem to get better. I can hear it driving with the windows down or in an airplane, I haven't had a quiet day since onset.

Well ... I heard it's easier to habituate if you have it constant (and pure tone) ... mine was changing a lot in first 2 months. It completely disappeared for 2 weeks, then appeared again as 6kHz pure tone, then disappeared again after 1 week and appeared again month latter as this fizzle / electricity feeling sound which now fluctuates on daily basis ...

 

[Alue]

Well ... I heard it's easier to habituate if you have it constant (and pure tone) ... mine was changing a lot in first 2 months. It completely disappeared for 2 weeks, then appeared again as 6kHz pure tone, then disappeared again after 1 week and appeared again month latter as this fizzle / electricity feeling sound which now fluctuates on daily basis ...

I wouldn't say a constant pure tone that is ultra high pitched (14-16kHz) and you can hear over everything is any easier to habituate to...

Just from seeing other people come and go on this site, the ones who have fluctuations shortly after onset seem to get better over time. Not necessarily the ones that have big fluctuations years after onset. If it disappeared completely there is hope for you that it can go away again or go away permanently.

 

[whiskeykonteq]

I wouldn't say a constant pure tone that is ultra high pitched (14-16kHz) and you can hear over everything is any easier to habituate to...

Sorry to hear that :-(

Just from seeing other people come and go on this site, the ones who have fluctuations shortly after onset seem to get better over time. Not necessarily the ones that have big fluctuations years after onset. If it disappeared completely there is hope for you that it can go away again or go away permanently.

I hope that you are right and that my tinnitus will go away one day without returning ... I will also try to give it some wind in it's sails with stem cells / whatever there is ...

Cheers

btw,
@monacco Can you please share with us what therapy are you going to have at stemcells21 ? umbrilcial cord blood or your own adipose MSCs ? Also if you are ok with it, you can share how much is the therapy ;-)

Thanks !

 

[Alue]

Sorry to hear that :-(



I hope that you are right and that my tinnitus will go away one day without returning ... I will also try to give it some wind in it's sails with stem cells / whatever there is ...

Cheers

btw,
@monacco Can you please share with us what therapy are you going to have at stemcells21 ? umbrilcial cord blood or your own adipose MSCs ? Also if you are ok with it, you can share how much is the therapy ;-)

Thanks !

Hope it goes away for all of us. Seems like stem cells may be our only hope for the future, but even then, it seems like there is a window of opportunity.

The nerve damage makes the most since in my case as I had an acoustic trauma, my hearing felt off for two days but no ringing. I went to urgent care the day after and had a 8kHz audiogram but that showed no hearing loss, on the third and fourth day I thought I was okay and back to normal. Then on the fifth day after the acoustic trauma I woke up with loud high frequency T that has been constant ever since. I think it just damaged my nerve connections at the ultra high frequency range and those died off days later. The most frustrating thing is the urgent care doctor could have put me on prednisone before that happened.

 

[Reinier]

Then on the fifth day after the acoustic trauma I woke up with loud high frequency T that has been constant ever since.

A similar experience I had. Initially after the acoustic trauma my hearing lacked high and mid frequencies. Probably more noticeable because my hearing before the acoustic trauma was stilt fresh in my memory. Also the protective mechanism inside the middle ear was still "active". That takes time to return to normal. Than after a month the tinnitus, hyperacusis and distorted hearing started. At that time it was difficult for me to remember what my hearing was before the acoustic trauma and therefore am not able to state that frequencies returned.
But it appears that nerve damage is lagging behind acoustic trauma.

 

[Leon909]

@whiskeykonteq that's a pretty interesting description of the way nerves degenerate. I wonder, how would you explain what happend to attheedgeofscience with this description?

1. His hearing improved after LLLT, but not his tinnitus.
2. With stem cell treatment, he improved his tinnitus for the first time and also further improved his hearing.

 

[Bobby B]

I think hearing loss and H goes with nerve damage, T is more of a hair cell damage issue which LLLT cannot fix unless its done by the days after damage.
I had T the minute after my accoutic trauma but H and distortion came a week later.
http://www.jneurosci.org/content/29/45/14077.short

Adding Insult to Injury: Cochlear Nerve Degeneration after "Temporary" Noise-Induced Hearing Loss

 

[bill 112]

If this paper is correct then how in gods name are we suppose to fix this?It seems everything to do with hearing involves"a window of opportunity"that everyone here has probably missed so where does that leave us?

 

[Beste]

Couple of days ago I wrote under one of Stem Cell 21's posts about how expensive theor treatments even there is no guarantee that it will work. They said they will have some guarantee for it and asked me to mail them about my questions. Still no answers. This got me thinking.

 

[RB2014]

Couple of days ago I wrote under one of Stem Cell 21's posts about how expensive theor treatments even there is no guarantee that it will work. They said they will have some guarantee for it and asked me to mail them about my questions. Still no answers. This got me thinking.

Even if they tell you there is a guarantee, I'm 100 percent sure you are not going to be getting any money back if this doesn't work. I have read about people trying and they get the run around until they finally give up.

 

[Beste]

Even if they tell you there is a guarantee, I'm 100 percent sure you are not going to be getting any money back if this doesn't work. I have read about people trying and they get the run around until they finally give up.

I know this treatment will not work for me anyway since I have no hearing loss. My case is benzo induced so potassium channels are my only hope.

 

[whiskeykonteq]

@whiskeykonteq that's a pretty interesting description of the way nerves degenerate. I wonder, how would you explain what happend to attheedgeofscience with this description?

1. His hearing improved after LLLT, but not his tinnitus.
2. With stem cell treatment, he improved his tinnitus for the first time and also further improved his hearing.

For 1. I don't have an idea, i.e. I have not looked deep into LLLT (basically, not much improvements for tinnitus, so I'm not that interested as my hearing is fine up to 8kHz (0 and 10 across all frequencies up to 8kHz).

For 2. You can look into http://www.researchposters.com/Posters/AAOHNSF/AAO2013/SP 384.pdf

Images and conclusion of section 2. Morphologic Regeneration after UCB-MSC Transplantation (Regeneration of SGNs after UCB-MSCs transplantation. (A) Severe loss of SGNs from the basal to the apical turn of the cochlea was observed in the SNHL group. (B) Five weeks after transplantation of UCBMSCs, SGNs were regenerated in all the turns of the cochleae).

As far as I understood, that means if tinnitus is symptom of degradation of spiral (cochlear) ganglion, UCB-MSC Transplantation should regenerate it along with regeneration of OHCs.

Guinea pigs received 10.000.000 UCB-MSCs. In stemcells21 they offer 30M, 60M and 100M of UCB-MSCs per one therapy (divided in n days depending on number of stem cells ...). ATEOS received 20M UCB-MSC in Bangkok, so I guess that regenerated some of his SGNs / OHCs / hair cells - thus tinnitus was 35-50% reduced and some hearing was gained.