Stem Cell Secretome Treatment

I personally would not do stem cells, only exosomes/secretome. Simply because the cells will only get to your cochlea in small numbers and they are unlikely to engraft there. And also the added danger of injecting live cells (especially allogeneic) vs injecting small extracellular vesicles.

 

To the cohlea specifically, or in general?

 

In the cochlea. Check this paper out:

Human mesenchymal stromal cell therapy for damaged cochlea repair in nod-scid mice deafened with kanamycin

 

This is what StemCells21 sent me over, of two patients whose hearing loss got better with stem cells.

 

2 or 3 months in now and it's a little better. Still annoying though and the hyperacusis is so bad I can never wear headphones really and it gets sorer from other loud noises too.

The price of it isn't an issue for me and the treatment seems to be pretty low risk so I was thinking it seems like a good idea. I'm meeting my ENT doctor in January so I'll see what happens there.

 

Is this a big improvement? Seems small to me but I don't understand it so well.

 

Yes not too bad, but my hearing loss is 35 dB only at 2 kHz so if I gain only 10 dB, it may be enough for the tinnitus to go away, who knows.

 

I have tinnitus and hyperacusis without any hearing loss. I was getting higher tones at first but after a few weeks it's not so bad. I wore headphones last night and now the tinnitus is worse and there's pain in the ear.

I would like to think that if I got one good treatment of the max dose they do at StemCells21 that it would almost completely fix my issues since my tinnitus isn't THAT loud. I'll see what my ENT says about it but I'm leaning heavily towards this, especially since there has only been a very slight improvement for me the past 3 months since onset.

Last time (2 years ago) I had a hearing test, it came back perfect, even though I had hyperacusis, and no tinnitus at that point. I'm going for another hearing test in a month from now so we'll see what happens then but I would guess it will be the same.

 

My update:

It is now roughly 4 weeks past my last IV. I tried to log my symptoms, but live life normally otherwise. I have noticed that in about a week after the last IV, my ear pressure started to go down. Before I would get ear pressure in response to sound exposure, but not anymore, or not to the same extent. I haven't tried exposing myself to continuous 85 dB noise, obviously, but I do not get ear pressure anymore after going to a restaurant (without plugs). I am also using headphones daily with no downsides.

My tinnitus, however, has stayed roughly the same. I think one or two sounds have disappeared (I have very many), and maybe the reactivity has lessened, but that is it. The baseline is pretty much the same or maybe slightly lower.

My hearing is also the same, no improvement in high frequency clarity.

My thoughts on why it was not as effective as I had hoped:

They administered 3 IVs, each had 7.5 ml secretome, with about 9*10^8 exosomes/ml. This is around 20 billion exosomes from the 3 doses combined, so about 0.33 billion per kilogram of body mass. However, in this paper they used about 3 orders of magnitude more per kilogram in mice, according to my calculations. The drug dose per kg needs to be adjusted when going from animal models to humans (a factor of 8-12 less for humans, but it does depend on the specific drug, obviously), so basically there was a factor of 100 difference between the dose that I received and what may have been more effective.

In addition, perhaps adipose tissue stem cells are not as potent as umbilical cord stem cells used in the paper above.

The verdict: it is not worth 20,000 EUR for tinnitus or hearing loss. My results are pretty inconclusive. As this is not a study (sample size N=1 and no controls, lol), I cannot say that my sensitivity improvement was due to the secretome. However, the clinic seemed very professional (no fake body scan BS you see in, ahem, other clinics) and they do see improvement in patients with neurological conditions, at least according to them.

 

Congratulations on the improvements you did experience and thanks for the update @Tau.

It seems we can conclude that stem cell secretome treatment at Anove in Germany is not a very good option for tinnitus sufferers.

 

@Tau, thank you for the detailed report man. It's good that you got some relief from the ear pressure at least. Maybe you'll see more improvements in the course of the following months as well!

 

@Tau, did you have any other improvements not related to the tinnitus? Any other physical/mental benefits?

And with regards to your sensitivity to sound, can you elaborate a bit on this? Are you no longer sensitive? Do you still experience reactive tinnitus or spikes after noise exposure?

Please let us know!

 

I no longer get ear pressure/pain from medium intensity sound, but I haven't tried exposing myself to very loud sound (85 dB+ for extended periods). My tinnitus still increases after moderate sound exposure and goes down in a day or so.

I have no other health problems except for mild visual snow syndrome (onset after tinnitus), so far it's about the same.

 

Tau, thank you for your posts. Before your treatment you said you had hyperacusis. Would you describe it as “loudness hyperacusis” or “pain hyperacusis”? After your treatment, you said your “sensitivity” was improved. Are you using the term “sensitivity” to mean the same thing as “hyperacusis” or does it mean something different?

Thanks.

 

Good to hear there is some improvement!

I wouldn't be worried about it not having a huge effect so far. Doesn't it take 6-8 months to properly see good results? That's what I've heard from other people who received stem cell treatment for hearing loss.

The umbilical cord stem cells are likely better also but the adipose should be good too. Just stay healthy for the next few months and I would guess you will see more improvement by a year at the latest.

 

Hey Tau,

I read your story and I mine is quite similar. If you're from Germany, can you tell us which doctor you went to for your diagnosis?

Thanks in advance

Also, I hope the stem cells work their wonders in the coming months

 

I had ear pressure after exposure to sound, and if I continued exposing myself to sound, it would become painful - pain deep inside, sort of going into my throat. It is better now. But again I cannot say whether this is due to the exosomes, or simply time.

Maybe, I am waiting, of course. Exosomes get cleared out of your body within 1-2 days, though, so the improvements may come from cells that have received the right signals.

I am not from Germany - sorry!

Thank you, just a clarification, I did not have any stem cells injected, it was only their exosomes/secretome.

 

Hey Tau,

I have some slightly off topic questions, I hope you don't mind me asking!

Did hyperacusis change in your case? I'm now having distorted hearing, too (like somehow high sounds resonate in my ears and are uncomfortable). Did it change over time for you? How do you perceive it?

 

I don't think this really did anything in the end, did it?

 

No, sound distortions are the same, unfortunately. I am less sensitive to sound in general, however.

Difficult to say if it was the exosomes, but I definitely have no ear pressure anymore.

 

That's crazy, looks like I'm in the exact same boat as you. I hope distortions don't get worse and start at <12 kHz and tinnitus stays the same

I'm sure relief will come within the next 10 years :^)

 

Hi @Tau, how is life treating you after the procedure? Do you experience any further improvements?

 

Hi,

Life is okay-ish. I have no sound sensitivity, as mentioned, so I wear headphones daily with no downsides. Yesterday I went out to eat and the noise in the restaurant was peaking at 80 dB. I did not wear plugs, even though I did have them with me, just in case. Nothing happened. Tinnitus did not increase, I had no ear pressure or pain.

However, I have not experienced any improvement in sound clarity.

I am not giving up, there are a lot of things to try.

 

@Tau, that sounds good - cleared hyperacusis and less reactive tinnitus. I hope things continue to improve for you!

What was the severity of your hyperacusis? Was it loudness or pain hyperacusis? Also I read in some of your posts that you have multi tonal tinnitus. Did you experience any improvement with it and how loud is it?

 

@Tau - going in the right direction - I'm pleased for you. You are right, there are other things to try. Keep going.

 

It was mild to moderate, tops. I would get ear pressure after noise exposure like road noise or talking to people on Zoom. If I continued, I would get deep stabbing pain going all the way to my throat.

I also had loudness hyperacusis where some high frequency sounds would be amplified, it's also lessened a bit.

A few of my tinnitus tones have disappeared, but that's about it.

Again, I am unsure whether it was exosomes or simply time.

 

First of all congrats on relieving some ear issues. I don't think it was time. Here I am 10 years later with the same pressure and reactivity.

If you don't mind me asking, did you have any sports injuries, autoimmune conditions etc that have shown signs of healing after doing this treatment? If the treatment possibly went systemic, so just to get an idea if it actually did some healing to the body.

I am considering this treatment or the one in Thailand for middle ear myclonus, ear fullness etc. Before I resort to cutting the damn tendons off. Any benefit to tinnitus would be a bonus.

 

I have no other conditions, except maybe some red spots on my face. The exosomes cleared it up a bit.

Just to reiterate, in my opinion, their dosage is way too low for the price you pay. In addition, one should be absolutely sure they do not have cancer as exosomes in some instances may speed up the division of cancer cells.

 

Can you tell us more about how it stopped your tinnitus reactivity? I would give ANYTHING to just stop the reactivity because this is the most disabling factor for me. I am literally a prisoner in my home due to it competing with ALL external sounds and even my own voice.

 

My 'reactivity' is/was slightly different. After sound exposure, my tinnitus sounds are louder for a day or two. It's lessened a little bit.

Could have been just time really. Hard to say.