Stem Cell Clinics for Treating Tinnitus?

Discussion in 'Alternative Treatments and Research' started by LostOutWest, Nov 2, 2019.

    1. lcj

      lcj Member Podcast Patron Benefactor Advocate

      Tinnitus Since:
      2001
      Cause of Tinnitus:
      medication
      Just want to say yup that’s correct, the US stem cell clinics can only offer frozen dead non-expanded cell products, or cells extracted from your own body and spun down and administered same day (neither of which are that potent), or exosomes which is a bit of a crapshoot - the FDA does not allow expanded cells to be administered. Now that doesn’t mean cells cannot be expanded in the US. DVC for instance expands their cells in the US (at a cGMP certified lab in the Denver area), and ships them to the Cayman Islands for use. Anecdotally, I talked to someone who was treated at DVC for MS with good results who said that his MS related tinnitus went away after treatment.

      Another US based company that collects and expands their cells in the US is Celltex, they bank them and administer them in Mexico.
       
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    2. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      Thank you for clarifying. It's an important piece of information that I hadn't heard of until now. I'll look into Celltex now too while I'm at it. I'm basically contacting as many stem cell clinics as I can right now to compare.

      At this point I am thinking StemCells21 is probably still best, maybe DVC second and the US probably have good PRP treatments, even though StemCells21 also do PRP as part of their treatment. I like how DVC have a high dose of stem cells. 300 million is quite a lot.

      It all depends on the individual too, how you acquired your tinnitus/hyperacusis probably plays a big role in whether or not this type of treatment will be beneficial. I think it's a good choice for me since my issue is caused by loud noise exposure.

      I will keep this thread updated with my correspondence with several clinics.
       
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    3. SmallRonnie
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      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      I spoke with Innate Healthcare.

      They have never treated anyone for hearing loss but sometimes when they treated someone for something else, the person would report their hearing got better, or their eye sight got better.

      They can do IV, intranasal and maybe local injections too. They said they have a good response in intranasal for brain disorders.

      They can do up to a billion stem cells, umbilical cord MSC, for about $26k. Very good pricing compared to other clinics.

      They also said they would like to try putting exosomes into a saline solution and dropping them into the ear. Sounds like a good idea since the exosomes are smaller than the stem cells and might get right into the ear.

      I also asked him about the above conversation about the FDA banning expansion of cells. This is only at a country wide level. Each state still have their own medical board so certain states can have different medical laws. So Arizona is a good state for stem cells apparently.
       
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    4. SmallRonnie
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      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
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    5. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      I got the following response from a stem cell clinic which I thought was quite insightful and very honest.
      They use umbilical cord cells. I've seen the same type of response from several doctors now.
       
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    6. Vincent R
      Caffeine

      Vincent R Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma
      I agree that was a response that sounds credible. May I ask what clinic it was? (If there are clinics in the West that use USC and appears honest, then they are perhaps worth to consider instead of StemCells21. The travel will be cheaper and perhaps the treatment as well.)
       
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    7. SmallRonnie
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      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      This was Stem Cell Rejuvenation Center in Phoenix. Lots of stem cell clinics in Arizona. I'm thinking of going to Innate Healthcare since they offer 10x more cells than StemCells21 for the same price. That's if you can believe everyone. The cells might be expanded a bit more though so maybe not as potent as the ones in StemCells21 but I don't fully understand the science behind that and I'm not sure if it really makes a difference or not.

      If you look at the clinical trial with the 11 children, the doses were pretty high. The Innate Healthcare doctor told me that in general clinical trials for stem cells are now usually about 6-10 million cells per kg of bodyweight whereas they used to be 4-6 million per kg.

      I also read a paper where they tested high doses of several billion cells in patients with some lung issue and there were no adverse effects. Small trial all the same but higher doses seem safer and more effective.

      This is a good read for anyone thinking about trying stem cell therapy.

      This is from Stem Cell Rejuvenation Center in Phoenix, AZ. I posted their first message above about their results for treating tinnitus.
       
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    8. lcj

      lcj Member Podcast Patron Benefactor Advocate

      Tinnitus Since:
      2001
      Cause of Tinnitus:
      medication
      I agree StemCells21 seems the most legit and most experienced by a lot. When I have time this weekend I will upload some data that Robert Potts from Celltex sent me regarding their experience with treating tinnitus.

      Btw apparently StemCells21 is going to expand to open a second location in Ho Chi Minh City in Vietnam. This just showed up on my feed. I wish it was closer to North America but still kinda cool.
       
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    9. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      I'd love to find a clinic that will do intratympanic injections with umbilical cord MSCs. That seems like it would be the best treatment for hearing issues.

      After looking at more clinics, it seems that StemCells21 is a little expensive if you measure by dollar value per stem cell. They do have a few extra things other clinics don't though all the same. Maybe the laser treatment at the same time really makes a difference.

      My thinking now is I just want to get the highest dose of UCMSC possible.
       
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    10. Vincent R
      Caffeine

      Vincent R Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma
      A couple of questions from someone who doesn't understand the scientific aspects particularly well...

      @SmallRonnie has been in touch with several stem cell clinics in US that offer umbilical cord MSCs. Are you saying these cell products, in comparison to what are offered at StemCells21, are of low quality? What is the difference? Are the stem cells at StemCells21 kept alive while cultivated and the ones in US frozen to death for storage before administration?

      Stem cells harvested from our own body fat aren't very potent, and being injected with dead umbilical cord MSCs sounds futile no matter what dosage you use.

      The bottom line, if I understand you correctly, is that either you go to StemCells21 or Cayman Islands/Mexico. Unless Cayman Islands/Mexico are a lot cheaper, StemCells21 wins out on its anecdotal record.
       
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    11. SmallRonnie
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      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      I have heard some other people say they do not like how the US freeze the stem cells but I thought everyone freezes them. DVC freeze them. A quick Google shows research stating freezing stem cells is no issue.

      A lot of it does come down to how much you can trust each individual clinic and how you can know if they're really giving you what they say they are.

      One thing about the US being different is not every state had the same medical laws so at a federal level, stem cell laws are not good but in certain states like Arizona, the stem cell clinics have more freedom.
       
    12. Vincent R
      Caffeine

      Vincent R Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma
      I glanced over Innate Healthcare's web page, and I must say I like the fact that they stick to UC-MSCs (not yet another ex beauty surgeon who does adipose stem cell treatment as a get-rich-quick scheme). Pricing also looks appealing.

      @attheedgeofscience benefitted from a treatment of a measly 20 million UC-MSCs. If you live in the US and don't need to worry about excessive travelling costs, then perhaps it could be an idea to start with a lighter treatment. To see if it kicks in.

      It's a tough call to burn a lot of money on a single stem cell treatment. Due to the woes of picking the right clinic, I would personally feel that StemCells21 is the only acceptable option from a risk-reward analysis if you go big. Treatments smaller in scale but still meaningful could perhaps be a financially realistic way to scout alternatives?

      Just a thought.
       
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    13. SmallRonnie
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      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      UC-MSC is appealing to me also. I read a paper which compared umbilical cord (UC), bone marrow (BM) and adipose tissue (AT) derived MSC but I didn't understand it to be quite honest. The trial with children who had stem cells to try and heal their hearing loss was UC-MSC and StemCells21 use them too.

      The trial with those children used 8-30 million cells/kg bodyweight. If I went to StemCells21 I would get about 2 million cells/kg. In my mind I'm just thinking a higher dose is better. @attheedgeofscience went back to StemCells21 to get a double dose after his first one went well. If I go to Innate Healthcare, I can get 20 million cells/kg for the same price but a higher passage.

      Innate Healthcare expand the cells a couple times more to get more cells so they are probably at passage 3 or 4. So StemCells21 claim that their cells are of a higher quality since they are passage one. Honestly, I really don't know how true that is. I'm not saying it isn't, I just don't know. I read in some places that expanding the cells a few times is fine. UC-MSC can be expanded more than AT and BM too.

      I would guess that Innate Healthcare is just very good value because it is forced to with the competition from other clinics in Arizona. Whereas StemCells21 is one of the only stem cell clinics in all of Asia so they get away with charging more.

      My ear is in such a bad state right now that I don't want to go around the world testing too many spots. It's a good idea if you could afford it but then you need to pay for hotels & flights and take time off work every time, then wait ages to see if it works or not, which can take a year.

      I'll just go big into one clinic first and see how it goes. If my ear heals, then I will be able to focus at work and make more money again anyway, so fixing this ear is my number one priority in life right now.

      I'm still talking to a couple more clinics. So many clinics won't even attempt to use stem cells for hearing issues.

      The PRP injection into the ear in Florida could be ok too but PRP has way less growth factors than stem cells. They use stem cells as well but only BM which is a very low count and lesser quality.

      UC-MSC into the ear will be the best treatment, in my opinion, if any clinic ever does it. Until one of the regenerative drugs finally hit the market at least.
       
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    14. Vincent R
      Caffeine

      Vincent R Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      09/2014
      Cause of Tinnitus:
      Acoustic trauma
      Tinnitus is taking its toll on me as well. I am currently in the process of saving up money for a stem cell treatment, so I'm highly interested in seeing if any relevant clinic appears in US. (Cheaper and easier travel compared to Bangkok, and perhaps cheaper treatment as well.)

      It would be big news if Tinnitus Talk could identify a clinic in US that deliver results comparable to StemCells21. Many more members would be able to undergo treatment.

      I compared Innate Healthcare's website with Stem Cell Rejuvenation Center's. I can't help to feel that Innate Healthcare lay it on too thick about what to expect from treatments. Stem Cell Rejuvenation Center make a more professional impression on me.

      I seem to recall that StemCells21 claim they always get some results with tinnitus clients. Stem Cell Rejuvanation Center, on the other hand, admit to have inconclusive results. A matter of passages? Even StemCells21 probably only have a small sample of tinnitus clients, though.
       
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    15. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      I guess most stem cell clinics don't talk about hearing issues much since the results aren't always great. Seems like you need a really high dose of stem cells for ear issues. Or else an intratympanic injection which most people are not trained to do.

      I'm doing a little more research and then I'm going to book an appointment with some clinic. Giving my ear some time to calm down after the current setback before I go on a long plane journey.

      I want to see how many cells Stem Cell Rejuvenation Center offer. They just say in terms of cc but I don't know how many cells that is. It's very hard to compare all the clinics too since not all the treatments are exactly the same.

      If you go off the trial with the children then it shows that a really high dose is needed to see improvement in hearing loss. That's just IV though. I would guess hyperacusis and maybe tinnitus to some extent is easier to treat rather than hearing loss but it probably is all mostly the same.

      BioXcellerator sound interesting too, need to talk to them. Maybe Giostar too.
       
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    16. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      A response I got from Celltex after asking a few questions:
       
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    17. lcj

      lcj Member Podcast Patron Benefactor Advocate

      Tinnitus Since:
      2001
      Cause of Tinnitus:
      medication
      Hi Vincent, yes that is what I'm saying. The cells offered at US clinics for treatment of non-cancerous diseases are either autologous, for instance spun down from the patient's own fat or bone marrow and administered same day, or they are a frozen prepared product made from a third party lab with no living cells. If there are medical doctors in the US offering expanded umbilical, Wharton's jelly or chord blood stem cells produced in their own laboratories, I would be very wary of that as they could have their license revoked. When investigating US clinics, I would ask who manufactures their stem cell product (then contact the manufacturer if you can to ask them questions like how they screen for hepatitis/HIV in the umbilical cord tissues they receive), if they could provide you with more information from their database about tinnitus outcomes, this question leads to whether they follow-up their patients by calling them say 6 months after the treatment, I would also ask if they could connect you to a past patient at their clinic.

      With stem cell clinics, I feel like the old adage of you get what you pay for is mostly true. StemCells21, for instance, is probably on the high end (although they do offer passage 3 and adipose derived mesenchymal cells for a steep discount from their top of the line passage 1 cells). However, they have an in-house team of cell culture technicians who handle all the steps from the receiving of the umbilical cord, to the production of the ultimate product, and as far as I know, they have a good safety track record.

      There was a guy on one of these stem cell groups a while back, John Miller, who ran a newsletter ranking stem cell treatment clinics around the world. He and I chatted briefly over email a few times. The last I heard, he got treated at a clinic in Mexico, flew home from the clinic to Vietnam with a fever, and died two weeks later. I can't prove that it was because of the stem cells, but I am definitely cautious of clinics outside of the US where there are lax laboratory and good manufacturing practice standards.
       
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    18. lcj

      lcj Member Podcast Patron Benefactor Advocate

      Tinnitus Since:
      2001
      Cause of Tinnitus:
      medication
      I wanted to get you this file that I received from Robert Potts (super knowledgeable guy who himself received stem cell therapy for epilepsy) at Celltex from a while back. This was taken from their database a few years back of everyone who had the symptom 'tinnitus' who received stem cell treatment from their clinic and the outcome - for most of these patients tinnitus was not their primary concern. The SF-36 is a quality of life patient reported questionaire.

      celltex_tinnitus.png

      I hope it helps you or others in some way.
       
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    19. Tem

      Tem Member

      Location:
      Australia
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Noise and likely labyrinthitis
      Just wondering if you have looked at EmCell at all? They're based in Kyiv but are operating normally, and accessible by car or train from Poland. Ukraine is apparently the only country that allows fetal stem cells (not embryonic) so they're different to anything else. There's a documentary on YouTube about them called The God Cells, but while there's been a handful of mentions of them here, nobody seem to have really considered it.

      They claim to have success with neurodegenerative diseases like Parkinson's. I was sad to read that @Tau had no success with his adipose stem cell treatment, which makes me wonder if only UC SCs (like StemCells21) or fetal SCs are worth trying.
       
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    20. SmallRonnie
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      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      This is very helpful, thank you!
       
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    21. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      I was considering them but the war is still ongoing. The Ukrainian refugees in my country still haven't returned home so I assume it is not safe to do so. Otherwise I would look into it more for sure.
       
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    22. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      @Tau got treated with exosomes, not stem cells. He also took bigger doses more recently so he may see good results yet. He also did see his pressure and pain disappear. Those often heal naturally too though. The pain is my biggest issue. I can learn to tune out the tinnitus but the pain will need more serious therapy. I guess people do learn to block out chronic pain as well so it is possible.

      I've heard of different clinics healing many different neurological disorders.
       
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    23. Tem

      Tem Member

      Location:
      Australia
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Noise and likely labyrinthitis
      Thanks for the reply. I didn't realise exosomes weren't considered stem cells. True, they did help with the pain, and maybe they work for tinnitus too but need many months to have a noticeable effect.

      I listened to this podcast with the documentary maker a few days ago which prompted the question about EmCell - They talk about going there with the war happening, and staying at the Intercontinental Hotel where all the foreign journalists are. It's from July but they felt it was safe.
       
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    24. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      It could be fine but I would still like to avoid the warzone. Fetal stem cells are the type of cells that can cause tumors too if I'm not mistaken so I want to avoid them. Fetal is the same as embryonic, right? Umbilical cord MSC is what I want.

      Really just want that because it is the only clinical trial done on humans for hearing loss. Adipose MSC is probably good too. Bone marrow has too low a count.
       
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    25. Tem

      Tem Member

      Location:
      Australia
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Noise and likely labyrinthitis
      Fetal and embryonic cells are from different stages of development. Embryonic are pluripotent which are the tumor/cancer risk kind. It's hard to get a consistent answer on fetal cells - some sources describe them as multipotent like UC and adipose while one source describes them as "mostly multipotent". The name EmCell implies embryonic but that's apparently a translation issue because they don't have different words for embryo and fetus.

      Not wanting to go to Ukraine or having a preference though, totally understand!
       
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    26. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      I haven't done much research on the fetal stem cells just because the war is putting me off. Definitely not as high a risk or tumor as the embryo stem cells but possibly more risky than umbilical cord. I haven't seen fetal stem cells used in any of the literature I read, which hasn't been a whole lot either.

      This is the only clinical trial using stem cells to treat hearing loss. You might be able to find clinical trials where fetal stem cells were used to treat other illness.

      EmCell do have some links to studies using fetal stem cells on their website. A lot of those publications seem to involve Ukrainian doctors who would have a conflict of interest. I am not going to look into this further personally.
       
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    27. Tem

      Tem Member

      Location:
      Australia
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Noise and likely labyrinthitis
      It's unfortunate that Western literature is basically non-existent because fetal stem cells are highly controversial/illegal in most countries. Even for research. Ukraine approved them in the 90s out of necessity, due to widespread health issues from Chernobyl and a shortage of bone marrow donors. There's a BBC article from 2005 about it.

      I was just curious if it had been considered, since it's this whole type of stem cell that's had no discussion here. Like most clinics, EmCell make no claims about hearing or tinnitus.

      I hope your treatment is super positive and look forward to updates!
       
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    28. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      There is another thread on stem cells and one member did mention going to EmCell and seeing very positive results from a brain injury or something similar. It very may well be a better option than umbilical cord stem cells.

      If I don't have any improvement with this umbilical cord stem cell, then I will definitely look into EmCell more.

      EmCell website says they use progenitor cells which is very similar to FX-322 so maybe it would be good. They say it doesn't cause tumors but of course they will say that. Very difficult to asses it when they seem to be the only clinic offering that treatment. I have heard of other clinics though too but it's always cases of people getting tumors.

      I'm not yet suicidal enough to increase my risk of tumor but I'm getting closer! :ROFL:

      I think I would probably try squirting BPC-157 into my ear before trying fetal stem cells. Both require more research but look promising.

      I'm currently just waiting for my tolerance to improve a bit before I book a flight. Right now I'm wearing earmuffs almost 24/7 and get pain if I play video games on the lowest volume so it might take a while. I could potentially be ok on a plane wearing hearing protection but I'm not sure. I'll need to do some tests by driving probably.

      I was thinking that it might be a good time to go get stem cells while I'm in a setback since the stem cells home in on inflammation. Because during a setback I surely have more inflammation and that would be a bigger signal for the stem cells. Might just end up making myself even worse and not helping at all too though.
       
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    29. Tem

      Tem Member

      Location:
      Australia
      Tinnitus Since:
      07/2021
      Cause of Tinnitus:
      Noise and likely labyrinthitis
      I'm sorry to hear you're in a setback, I sympathise. When my ear was damaged I had hyperacusis for a couple of months and it was terrible. Pretty sure it was tonic tympani tensor syndrome. Like most people here I saw numerous doctors and ENTs that were no use.

      I covered my ear to use my microwave, wore earplugs in the shower, while driving... I remember reading that it was important to keep in mind that minor sounds are not loud enough to cause damage, even though it feels like it. So I stopped protecting myself from softer sounds like taps running or the kettle boiling. Whether this retrained my brain or it was time, well that's always the question with any improvement.

      Besides the baseline ringing I'll still get bad days, some with pain, which I also believe is inflammation. On those days I mix 2g of NAC and 2g of ALCAR into warm water and drink it. NAC is supposed to be a strong anti-inflammatory, have you tried it?
       
    30. SmallRonnie
      Ape-like

      SmallRonnie Member Podcast Patron Benefactor

      Location:
      Ireland
      Tinnitus Since:
      H since 2018. T since 2021
      Cause of Tinnitus:
      Loud noise
      With my recent setback I think it is TTTS too since I had fluttering in my ear for a while after. Last time I recovered well after a couple months but I started to get a little more pain, didn't cover up again and it just went back to worse than square one.

      I really do believe I will improve with time. This is one reason why it will be hard to assess if stem cells will help or not because so many people do improve over time anyway.

      I am not taking NAC but I should. I took some racetam a few years ago, can't remember which one but I think it did improve my focus for a while. I am definitely open to taking alternative medicine. I need to focus on those things really. Just the past few weeks I've had extra loud tinnitus and lots of pain makes it hard to focus on anything. I've been drinking a lot of alcohol which probably isn't helping but at least lets me sleep.
       
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