So you still have distortions? Or do you consider distortions part of hyperacusis?Hi,
Still nothing. But I am hyperacusis-free, so that is good.
I am continuing with intravenous umbilical cord stem cell exosomes, at very high doses (2 trillions every few weeks, compared to around 20 billion at the clinic). But so far nothing. The next step would be intratympanic things.
Stem Cell Secretome Treatment
- Thread starter Tau
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I do not consider distortions part of hyperacusis at this point. Yes, I have hearing loss that presents as distortions.
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That's because they never were. People get confused. Distortions come from a difference in hearing of frequencies from your left cochlea to your right, and your brain can't accurately distinguish the sound. I barely have hyperacusis anymore but I still get distortions with certain white noises because my left ear is damaged.
Did you have loudness or pain hyperacusis? Or both? Did anything in particular make it better or did it heal with time?
My pain hyperacusis usually goes away with time but always comes back if I get exposed to loud noise again and my threshold has been lowering over time also.
Hoping stem cells will raise that pain threshold which doesn't seem that far fetched to imagine.
How did you manage to get such a high dose? Your statement implies you are getting it outside the clinic? Did they send it to your GP or something?I am continuing with intravenous umbilical cord stem cell exosomes, at very high doses (2 trillions every few weeks, compared to around 20 billion at the clinic). But so far nothing. The next step would be intratympanic things.
Did you need to pay extra for the larger dose? I am contacting Anova now too and will try to convince them to treat me.
Sorry, I am under an NDA and cannot disclose these things.
For what it is worth, I do not think Anova's low doses would help much.
How interesting. Well hopefully whoever you are working with will find good results and have a treatment to share with the public.
The doses do seem low compared to some of the trials that happened, like the one with the children.
Would be amazing if that turns out to be a brilliant cure. Seems like it will work but just needs some more research to fine tune the treatment.
The trial with children was with stem cells themselves, if I recall correctly.
It makes sense that intratympanic would be more beneficial. StemCells21 say that how they inject around the outside of the ear ends up just as good but I don't know.Well I have had no improvement in hearing, but I haven't tried intratympanic things yet.
I will very soon, though
I spoke with Anova and they plan on getting an ENT some time in the future so they will be able to perform intratympanic injections as they think it's better than IV for ear issues.
Random question here. Did you see improvements in your hyperacusis and migraines that you previously mentioned after the 20 billion exosomes IV from Anova or was it only after the extra trillions doses that you saw those improvements?
Hyperacusis - after Anova (but I think it was getting better on its own), and I had one migraine after Anova, and none after the other exosomes. I still take them once every few weeks, basically whenever I want.
I have given it some time and now almost a year later I am sitting here with burning pain in my ear in silence so I think it is worth a shot at this stage.
One month isn't nearly enough time to assess the result and regardless, it's not a proper study.
Visual snow is the same as it is likely directly correlated with the signal loss due to hearing loss.
Again, I cannot recommend this treatment because of the decently high cost, the low absolute numbers of exosomes and the lack of evidence of efficacy.
Even with your improved hyperacusis, there's a decent chance that it just healed naturally as is often the case.
Might have a better chance of having some effect once they get an ENT to deliver the treatment.
I look forward to seeing how you progress with your current treatment all the same.
This is exactly my point.
Unsure if I can disclose that, to be honest. We will see.
How mysterious. Well I guess I will just hope to see the results published and a new treatment become available at some stage.
Do you know what the equivalent of 20 billion exosomes would be in stem cells?
Thinking getting 300 million umbilical cord MSC in DVC Stem might be a better option than 20 billion exosomes. Or else StemCells21. The passage is important too, I don't know what is best, I don't think anyone does.
How old are you too if you don't mind me asking? I read that a patients age is important for adipose derived cells.
I'm in my early 30s.
I haven't looked into 'equivalent dosing', but 20 billion exosomes is low.
That Anova treatment does seem massively overpriced for what it is for sure.
He said he would like to try and put the exosomes into saline drops and just drop them into the ear and see if that might help. Cleaning out the ear first, drop them in, then wait to see if they get through.
It might actually be pretty decent. He'll administer the stem cells IV, intranasal and maybe local injections if I want.
He said he never had anyone come to him directly for hearing issues but when they helped people with other issues, they sometimes noticed that the patients' hearing did improve.
I was talking to another clinic who will dose about 100 billion exosomes on top of a billion stem cells. All for about the same price as this Anova treatment. Innate Healthcare in Arizona.
He said he would like to try and put the exosomes into saline drops and just drop them into the ear and see if that might help. Cleaning out the ear first, drop them in, then wait to see if they get through.
It might actually be pretty decent. He'll administer the stem cells IV, intranasal and maybe local injections if I want.
He said he never had anyone come to him directly for hearing issues but when they helped people with other issues, they sometimes noticed that the patients' hearing did improve.
How long ago was it since you dosed intranasally and did you have any effect from it?
I read today a clinic said people see exosome benefit in 3-5 months and best results after 8 months.
Intratympanic really does seem like the best method of delivery. The other routes do obviously have some effect but seems to be way less. It could be very dependent on each individual too.
It's very hard to find a clinic that will do intratympanic injections and the ones that do, don't use the better umbilical cord MSC. I think that one is better but I'm really not sure. Umbilical cord, adipose and bone marrow are all slightly different.
5 months ago, no effect apart from quickly fixing mild ETD I had due to an infection.
Not worth it, as the number of exosomes is low for the price. Even with really high doses IV (not their exosomes), I saw no improvement in hearing or tinnitus, but my hyperacusis is gone. Unsure if that was natural or that exosomes helped.
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