Stem Cell Secretome Treatment

[IntotheBlue03]

If some of the more expert members with experience and the knowledge could weigh in on this I would appreciate it. Would you say you generally need to know the cause of your tinnitus for stem cell to be effective as far as doing targeted treatments vs systemic? If you don't have hearing loss (or maybe hidden hearing loss) I'm wondering how else it may be effective.

 

[Tau]

If some of the more expert members with experience and the knowledge could weigh in on this I would appreciate it. Would you say you generally need to know the cause of your tinnitus for stem cell to be effective as far as doing targeted treatments vs systemic? If you don't have hearing loss (or maybe hidden hearing loss) I'm wondering how else it may be effective.

First of all, this was stem cell exosomes, not the cells themselves. Second, there is some pre-clinical data that they are effective, but one needs higher doses.

In principle, I could try intratympanic exosomes, too. I do have hearing loss, just not something that's visible on an audiogram (a few 10 dB dips are there, though).

 

[Gb3]

@IntotheBlue03, how long have you had tinnitus?

 

[ZFire]

@IntotheBlue03, how long have you had tinnitus?

Their profile info page says tinnitus since 12/2021.

 

[Gb3]

Their profile info page says tinnitus since 12/2021.

Ya, I saw that. Then I saw they already paid $7,000 looking for treatments/cures. Someone should be letting them know to relax. There is no quick fix. @IntotheBlue03, hopefully yours will resolve on its on, it's very early on.

 

[Tau]

Someone should be letting them know to relax. There is no quick fix.

Steroids right after the onset + NHPN-1010 work as a 'quick fix' in some cases.

 

[Gb3]

Steroids right after the onset + NHPN-1010 work as a 'quick fix' in some cases.

Agreed, but very slim chance. That's about it.

 

[IntotheBlue03]

Ya, I saw that. Then I saw they already paid $7,000 looking for treatments/cures. Someone should be letting them know to relax. There is no quick fix. @IntotheBlue03, hopefully yours will resolve on its on, it's very early on.

Thanks @Gb3, that's now $3k after getting refunded for hearing aids but since I have garbage high deductible health insurance it'll be back up to $7k soon.

My tinnitus does not trace back to a specific event and I have autoimmune and cervical issues so aside from how severe it has been it put me on high alert.

I have just started to break out of the fight or flight mode this landed me in for 6 weeks. Not trying to compare to others here but the more I read across the forum, it seems I'm in a very unlucky subset with the tinnitus being centralized, ultra high frequency and reactive in nature. It's this reactive oscillating quality that has driven me mad quite frankly.

Here's to hoping we all get relief in the near future but at this point, aside from stem cells I think I've exhausted most testing and treatments options available to me.

 

[danielthor]

Thanks @Gb3, that's now $3k after getting refunded for hearing aids but since I have garbage high deductible health insurance it'll be back up to $7k soon.

My tinnitus does not trace back to a specific event and I have autoimmune and cervical issues so aside from how severe it has been it put me on high alert.

I have just started to break out of the fight or flight mode this landed me in for 6 weeks. Not trying to compare to others here but the more I read across the forum, it seems I'm in a very unlucky subset with the tinnitus being centralized, ultra high frequency and reactive in nature. It's this reactive oscillating quality that has driven me mad quite frankly.

Here's to hoping we all get relief in the near future but at this point, aside from stem cells I think I've exhausted most testing and treatments options available to me.

Your tinnitus could very well be immune-related, and if so you have a huge chance with stem cells. As far as I can tell, immune-related tinnitus are the only cases that have had success with it, and it's a success pretty much every time.

Before going that route, you could try LDN. It's an immune-modulator, like stem cells. A number of people have had their tinnitus vanished because of it.

 

[IntotheBlue03]

Your tinnitus could very well be immune-related, and if so you have a huge chance with stem cells. As far as I can tell, immune-related tinnitus are the only cases that have had success with it, and it's a success pretty much every time.

Before going that route, you could try LDN. It's an immune-modulator, like stem cells. A number of people have had their tinnitus vanished because of it.

Thanks @danielthor. I did start LDN a little over a week ago and am on a dose at 4.5 mg daily. Unfortunately I started Grandaxin around the same time so I'm not sure which is lowering my tinnitus volume (assuming it's the Grandaxin). I guess I'll know for sure in time if it does resolve or when I taper off from the Grandaxin.

 

[IntotheBlue03]

Your tinnitus could very well be immune-related, and if so you have a huge chance with stem cells. As far as I can tell, immune-related tinnitus are the only cases that have had success with it, and it's a success pretty much every time.

Before going that route, you could try LDN. It's an immune-modulator, like stem cells. A number of people have had their tinnitus vanished because of it.

My question is, and I'm doing my best to research this across the board, what kind of stem cell injections have folks had at StemCells21 and others? Systemic vs local? I believe I came across one poster @undecided who had drastic improvement 7-8 months later who did not know his tinnitus cause, so it's questionable as to whether the stem cells helped. However I believe he had local injections. I'll have to research that a bit more. All of this is so difficult to research and digest when you are attempting to function again under tinnitus distress. I know I've sounded like a simpleton in many posts on this forum but I am doing my best.

 

[danielthor]

My question is, and I'm doing my best to research this across the board, what kind of stem cell injections have folks had at StemCells21 and others? Systemic vs local? I believe I came across one poster @undecided who had drastic improvement 7-8 months later who did not know his tinnitus cause, so it's questionable as to whether the stem cells helped. However I believe he had local injections. I'll have to research that a bit more. All of this is so difficult to research and digest when you are attempting to function again under tinnitus distress. I know I've sounded like a simpleton in many posts on this forum but I am doing my best.

As far as I'm aware there is only one procedure at StemCells21. They take it from a donated umbilical cord and shoot it up your spinal cord. Then they use peptides to navigate the cells to where they're supposed to go. There have been a total number of 6 people here who went ahead and got it. I've noticed that the ones with autoimmune issues (and tinnitus cause unknown) had their tinnitus reduced with stem cells. The cases of noise injury did not.

Everybody starts out as simpletons in the things they want to research in. You'll be an expert in no time at the rate you're going.

 

[IntotheBlue03]

As far as I'm aware there is only one procedure at StemCells21. They take it from a donated umbilical cord and shoot it up your spinal cord. Then they use peptides to navigate the cells to where they're supposed to go. There have been a total number of 6 people here who went ahead and got it. I've noticed that the ones with autoimmune issues (and tinnitus cause unknown) had their tinnitus reduced with stem cells. The cases of noise injury did not.

Everybody starts out as simpletons in the things they want to research in. You'll be an expert in no time at the rate you're going.

Thanks Daniel. You are very kind and this information is super helpful. I have other things going on that scream autoimmune for the tinnitus (inflammatory arthritis which I've gotten an unofficial diagnosis for from a rheumatologist due to progressive spinal injuries, crossovers of MCAS/immune issues, visual disturbances that I'm trying to rule out as autoimmune but mimic MS). So I was actually considering stem cells heavily before the tinnitus. I've reached out to SC21 but the responses are pretty slow.

Do you know anything regarding the validity of OAEs? All my audio tests came back normal (tympanometry, acoustic reflex, ABR, only normal hearing loss past 16 kHz and I'm 36) but I have 2 conflicting OAEs that supposedly show different levels of loss between 5-8 kHz in each ear. I'm not sure how much stock to put in them though.

 

[danielthor]

Do you know anything regarding the validity of OAEs? All my audio tests came back normal (tympanometry, acoustic reflex, ABR, only normal hearing loss past 16 kHz and I'm 36) but I have 2 conflicting OAEs that supposedly show different levels of loss between 5-8 kHz in each ear. I'm not sure how much stock to put in them though.

No sorry, I'm pretty lost when it comes to that. But really does look like stem cells could be the golden ticket for you.

 

[SmallRonnie]

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.

Good to hear it's a bit better anyway. I have heard from others who received stem cell treatment that it took 6-8 months to see the best results.

I'm waiting to see my ENT and then I'll most likely be going to the StemCells21 in Bangkok and going for the max treatment they have.

 

[IntotheBlue03]

Good to hear it's a bit better anyway. I have heard from others who received stem cell treatment that it took 6-8 months to see the best results.

I'm waiting to see my ENT and then I'll most likely be going to the StemCells21 in Bangkok and going for the max treatment they have.

Please keep us posted @SmallRonnie.

 

[SmallRonnie]

Please keep us posted @SmallRonnie.

I will. I emailed StemCells21 and got an email back with lots of info.

I'm asking them a bunch of specific questions now.

I have noise-induced tinnitus. Really hoping the stem cells will make it even somewhat more bearable as I'm only 28 and the tinnitus is really causing me huge amounts of stress in my life. I don't see how I would be able to continue on like this forever but I guess I would have to find a way.

It was better for a few weeks but I got stressed out again recently and it's now as bad as ever.

 

[IntotheBlue03]

I will. I emailed StemCells21 and got an email back with lots of info.

I'm asking them a bunch of specific questions now.

I have noise-induced tinnitus. Really hoping the stem cells will make it even somewhat more bearable as I'm only 28 and the tinnitus is really causing me huge amounts of stress in my life. I don't see how I would be able to continue on like this forever but I guess I would have to find a way.

It was better for a few weeks but I got stressed out again recently and it's now as bad as ever.

Really sorry to hear that. In what way did it get worse and do you believe it's just from stress? Is your tinnitus in one ear or both? High or low frequency? We are both young. I'm sure relief is on the way, the question just is how soon.

 

[SmallRonnie]

Really sorry to hear that. In what way did it get worse and do you believe it's just from stress? Is your tinnitus in one ear or both? High or low frequency? We are both young. I'm sure relief is on the way, the question just is how soon.

I have been extremely stressed out for other reasons recently and losing sleep so maybe that's making it worse. Also I was screaming a bit so maybe when I screamed, the loudness caused the tinnitus to spike again, not sure.

I have a high pitch noise in one ear more so. It's worse in one ear. I get a high pitch noise in the other ear sometimes too. Recently I've been getting this irregular low frequency noise, hard to explain, just an irregular low frequency noise, kind of like chirping.

The noises aren't always constant except maybe the high frequency noise in the bad ear but it varies in volume a lot.

Hopefully we do get some treatment that actually works eventually. FX-322 or whatever it's called seems like the best hope. Or else the stem cell therapy in Bangkok could be the best thing to do. I'm almost definitely going to try that.

 

[Ela Stefan]

Your tinnitus could very well be immune-related, and if so you have a huge chance with stem cells. As far as I can tell, immune-related tinnitus are the only cases that have had success with it, and it's a success pretty much every time.

Before going that route, you could try LDN. It's an immune-modulator, like stem cells. A number of people have had their tinnitus vanished because of it.

What about local neuropathy in the middle ear due to local inflammation? Would stem cells work for it?

 

[tenforce]

Hi @Tau, I just caught up on your interesting reports about the treatment and its effects. Very informative!

I was wondering how you are doing now? Is the pressure/pain-from-noise symptom still gone? I suffer from it, too, and was also thinking about doing your treatment. But now I'm really unsure, because I also suffer from the distortions and you said those didn't get better. I will probably not take the risk and spend the 20k, and just hope that the pressure/pain thing will go away by itself..

Thanks for sharing your journey with us. I think, independent of the outcome, it is very useful and interesting for all of us. Wish you all the best!

 

[Tau]

I was wondering how you are doing now? Is the pressure/pain-from-noise symptom still gone? I suffer from it, too, and was also thinking about doing your treatment. But now I'm really unsure, because I also suffer from the distortions and you said those didn't get better. I will probably not take the risk and spend the 20k, and just hope that the pressure/pain thing will go away by itself.

My hearing loss and tinnitus are the same, and I am still pain and pressure-free.

The problem is that I cannot say whether the exosomes actually helped or whether it was simply time.

 

[SmallRonnie]

My hearing loss and tinnitus are the same, and I am still pain and pressure-free.

The problem is that I cannot say whether the exosomes actually helped or whether it was simply time.

It does take at least 4-6 months to see any benefit for tinnitus according to the doctors from StemCells21.

This is our corespondence:

How long until you notice improvements?
Usually, the improvement will be noticed within 4-6 months from the treatment day, it will be gradually.

 

[SmallRonnie]

My hearing loss and tinnitus are the same, and I am still pain and pressure-free.

The problem is that I cannot say whether the exosomes actually helped or whether it was simply time.

Hello Tau,

How are you doing now?

Any improvement?

 

[Tau]

Hello Tau,

How are you doing now?

Any improvement?

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.

 

[SmallRonnie]

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.

Good to hear your hyperacusis is better. Was that loudness or pain hyperacusis?

I hope it works out well for you. Good sign that you're persisting with it anyway.

I'm potentially going for treatment with StemCells21 myself soon.

 

[Ela Stefan]

As far as I'm aware there is only one procedure at StemCells21. They take it from a donated umbilical cord and shoot it up your spinal cord. Then they use peptides to navigate the cells to where they're supposed to go. There have been a total number of 6 people here who went ahead and got it. I've noticed that the ones with autoimmune issues (and tinnitus cause unknown) had their tinnitus reduced with stem cells. The cases of noise injury did not.

Everybody starts out as simpletons in the things they want to research in. You'll be an expert in no time at the rate you're going.

Would that help sensory tinnitus, due to brainstem damage?

 

[Tau]

Good to hear your hyperacusis is better. Was that loudness or pain hyperacusis?

It was both.

I'm potentially going for treatment with StemCells21 myself soon.

At this point I would not recommend it, I think one needs to have a decently high concentration of growth factors and/or exosomes on the round window for this kind of stuff to be effective.

 

[SmallRonnie]

It was both.

At this point I would not recommend it, I think one needs to have a decently high concentration of growth factors and/or exosomes on the round window for this kind of stuff to be effective.

I'll probably still try it anyway even if it might only help a very small amount or not at all. Willing to take that risk. I do want some of the general health benefits such as healing old muscle injuries too which happens to many people.

 

[Tau]

I'll probably still try it anyway even if it might only help a very small amount or not at all. Willing to take that risk. I do want some of the general health benefits such as healing old muscle injuries too which happens to many people.

Exosomes have completely eliminated my migraines (which had never been an issue, but still).