Faye Posted November 26, 2015 Report Share Posted November 26, 2015 Has anyone heard of this type of treatment for POTS? Or know anyone who has had it? Found this from autonomic specialist on their website, but based on my limited research and knowledge of POTS am hoping someone has heard of knows something bout it. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 26, 2015 Report Share Posted November 26, 2015 This procedure, ccsvi is quite controversial. One of the doctors who completes the procedure on dysautonomia patients basically inserts a balloon into the jugular veins and believes that when he dilates the veins that symptoms improve or disappear. The procedure costs $8,000.00 and isn't covered by insurance nor is it approved by the FDA. The procedure was originally designed for MS patients and large studies in Italy and the US were then conducted and found not be particularly safe or proved to be helpful long term, and the side effects may range from worsening of symptoms, intracranial hemorrhage, stent migration into a renal vein, thrombosis and nerve compression syndrome, so I highly recommend that you discuss the pro's and con's of this with your doctor. Quote Link to comment Share on other sites More sharing options...
Faye Posted November 27, 2015 Author Report Share Posted November 27, 2015 Thank you for this feedback, I have been reading about POTS since my cardiologist first mentioned to me, and had not heard about this, while searching Internet, stumbled across this, and wondered with POTS having so many different symptoms as well as possible causes, I just wasn't sure since this site and the dysautonomia international site didn't have this listed as a possible way to treat...POTS is something I am now just hearing and learning about.... Quote Link to comment Share on other sites More sharing options...
ks42 Posted November 27, 2015 Report Share Posted November 27, 2015 I had a doctor at one point who sent several patients to Dr. Arata, one of the main doctors who does this in the U.S. I got to speak with the patients, and they were doing really well after the procedure - their POTS symptoms had lessened a lot or disappeared completely. These patients swore by it and said it changed their lives. However, I've also heard of several people who have had their symptoms return months or years after the procedure (sometimes worse than before) and have needed the procedure to be done again.The biggest issue for me is that because the procedure is so new, we don't have any long term studies on it. I think it may have only been around since 2009 or 2010 (can't remember though, so don't quote me on this). So we really have no idea how well people do over the really long term. Do they suffer adverse events? Do they have a higher risk of stroke, thrombolytic events, etc? All are possible outcomes, but at this time I don't believe we know. Given that I have EDS, I would have a much higher risk of adverse events from a procedure like this, so for my peace of mind, need more studies done on a larger more varied population in order to feel comfortable with the procedure. Canada is currently doing some larger clinical trials on it, and I believe some other countries are as well.And, in many cases of MS where they've confirmed jugular vein blockage, they've also found that some underlying issue is causing the body to produce high levels of endothelin-1, which blocks the jugular vein. Theoretically, then, if you unblock the jugular vein, but there is still an underlying issue there, you're not treating the root cause of the problem. So, TVAM just becomes very expensive (and perhaps risky) symptom management that may have to be repeated over time. This may also be the case with POTS. So again, I'm waiting until more research becomes available. Quote Link to comment Share on other sites More sharing options...
corina Posted November 27, 2015 Report Share Posted November 27, 2015 When I did a little research on this, this is what I found on the internet:Physicians and researchers from the American Autonomic Society have published an advisory statement regarding the "transvascular autonomic modulation" procedure. The autonomic experts do NOT recommend this procedure as a treatment for POTS or any other form of dysautonomia. They note that there is no data at all to support the utility of transvascular autonomic modulation and there is no scientific rationale behind it. Quote Link to comment Share on other sites More sharing options...
plaster89 Posted November 30, 2015 Report Share Posted November 30, 2015 TVAM is apparently very successful but expensive. Michael Arata, a doctor who is doing this, have had only one complicated case while thousands were extremely successful. I know it is less than three years old. That's why it is impossible to judge the mortality and how it effects the patients in the future. Quote Link to comment Share on other sites More sharing options...
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