ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

What is the TVAM (Transvascular Autonomic Modulation) Procedure?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Allyson, Feb 25, 2014.

  1. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    672
    Australia, Melbourne
    What is the TVAM Procedure ?



    A Transvascular Autonomic Modulation . It's a procedure the balloons your jugular vein to help reinvigorate the ANS (autonomic nervous system) by improving communication between the organs and the brain. Helping with a lot of symptoms POTS people have. Some have reported to be free if symptoms after this procedure . Just wanted to know if anyone has had it done?

    B It is only thought to help with if you have specific underlying conditions. It is very new. It is also based on the same principals as the procedure the that was being done about ten years ago where people where having Vegas nerve stimulators put in. Patients flocked to it because it "completely cured" people. Only that after a year or two they all relapsed and almost all would up bed bound and 100% disabled. I think 100% of people did report ultimately being worse after. A large percentage of those who had the nerve cut died. I'll see if I can find the article. I know about it because my docs at the time wanted to send me for it. I was 19..... 2 years later the FDA stopped all the trials and basically black boxed the procedure.

    C There have been a number of statements against it by docs stating too many risks for little improvement. There were a number of clinics opened up during the CCSVI craze and those same clinics now need more patients after there were something like 40,000 self paid procedures in one or two years before organizations came out against it. Many MS patients seemed to get temporary relief but symptoms came back after a few months or a year.

    E My teen son had it & is doing very well. Has his life back. There are many others who are doing well 5 yrs after their TVAM. It is experimental for sure. But my son would be bedridden by this point if he had not had the treatment. There's no cutting of the Vegas nerve. It's very safe. Spoke with many drs around the country prior to having the TVAM. They said the procedure is safer than heart angioplasties that are performed by the thousands.

    F please research this thoroughly before deciding. The procedure is not endorsed by any of the big hats in dysautonomia research and it doesn't come without risks. Not to mention that no insurance covers it, FDA hasn't approved the procedure and whatever benefits are transient at best. Also, Dr Arata admitted that he has no explanation for how/why the procedure works for dysautonomia. And the most important aspect (I think) is the fact that there are so many causes for POTS that a one size fits all kind of treatment is just not realistic.


    G My son had a nervous system imbalance. It sounded very scary to us @ the beginning. It's not. . No medicine to cure or really help.

    G So the TVAM helped my son. Miracle to have found this procedure.


    interesting!
     
    Wayne, maryb and Emootje like this.
  2. chilove

    chilove Senior Member

    Messages:
    266
    Likes:
    61
    It's very interesting. I'd definitely consider it if nothing else works.
     
  3. Emootje

    Emootje Senior Member

    Messages:
    284
    Likes:
    106
    The Netherlands
  4. lnester7

    lnester7 Seven

    Messages:
    1,358
    Likes:
    1,293
    USA
    http://autonomicspecialists.com/tvam-transvascular-autonomic-modulation/


    The primary treatment is an endovascular procedure in which a catheter is inserted via a small incision and threaded up into the jugular vein. The jugular vein is expanded in much the same way that coronary angioplasty expands narrowed arteries of the heart.

    Has Anybody heard about this???? Any experiences?
     
  5. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    3,227
    Likes:
    6,318
    USA
    @Inester7 Just curious, how did you find this doctor and website? I read through it and it is very interesting but had never heard of the TVAM procedure before. It is only about and 1-2 hrs south of me (depending on traffic!) but I have some skepticism as it seems like this site is reporting TVAM as a cure for just about everything under the sun. It also seems dangerous but I don't have enough scientific background as others who might read it.
     
    lnester7 likes this.
  6. lnester7

    lnester7 Seven

    Messages:
    1,358
    Likes:
    1,293
    USA
    Well I was looking into solutions for my dysautonomia, there is a good video that explains the procedure and it make sense to look at the valves of the veins and unplug them. But In my case, I have somewhat irregular size (pallets or blood ) cant remember the term, but would make sense that they plug up for me, My concern is if I do release the pressure, next time another bad size blood comes it will plug again??? I am not sure still looking into it. Will keep digging and see what I found.
     
  7. lnester7

    lnester7 Seven

    Messages:
    1,358
    Likes:
    1,293
    USA
  8. Ecoclimber

    Ecoclimber Contamination? What contamination!

    Messages:
    782
    Likes:
    1,603
    Mercer Island Wa
    Permission to repost from Prof. G.

    If you conduct a search on this research site you will discover a number of research articles relating to CCSVI.

    Their latest comment is that:
    Saturday, 13 September 2014

    CCSVI a dead science as far as ACTRIMS/ECTRIMS 2014 is concerned

    #MS Research #CCSVI a dead science at #ECTRIMS
    M Rasminsky The interaction among patients and their advocates, medicine, science, the media, social media, politics, and granting agencies: the complicated new world of medicine in the Facebook era in which anecdotes can trump reason and science, and in which millions of dollars must be expended to disprove biologically implausible hypotheses.

    At ACTRIMS/ECTRIMS2014 there was no mention of CCSVI at all suggesting that Neurological Interest in this has had its day.
    The only presentation mentioning this was about Social media and the presentation had the longest title.
    Neurologists were not in this space and were too slow to counter the hype, particularly by the media.
    Whilst there will be many MSers who will continue to believe or convince themselves about this aspect it seems that this aspect has largely had its day .

    The question is......what's Next



    What does the MS medical community do about Physicians that offer these unsubstantiated treatments for financial gain..is this private practise or Fraud?

     
    lnester7 likes this.
  9. lnester7

    lnester7 Seven

    Messages:
    1,358
    Likes:
    1,293
    USA
    Man is sad when you see the doors to heaven and something so promesing turn out so doubtful.
     
    charlie1 likes this.
  10. knackers323

    knackers323 Senior Member

    Messages:
    898
    Likes:
    188
    Hi @Allyson what symptoms did it help your son with?
     
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    5,340
    Likes:
    6,762
    Cornwall, UK
    It's vagus nerve, not Vegas! Also known as the vagal nerve.

    If one needs to dilate veins, increasing nitric oxide levels might be safer. There are a number of threads on this.
     
  12. ahimsa

    ahimsa Senior Member

    Messages:
    1,212
    Likes:
    1,403
    Oregon, USA
    @knackers323 - I think that story was from someone else, cut and pasted from another forum or web page, not Allyson's story. I think the "interesting" part at the bottom is the comment from Allyson.

    I'm not 100% sure but I don't think Allyson is a member any longer? (my guess from the **** under her name)
     
  13. Sing

    Sing Senior Member

    Messages:
    1,505
    Likes:
    970
    New England
    I just read about this, offered in a clinic for dysautomia in Newport Beach, CA. Found it when looking for a treatment for SFPN (Small Fiber Poly-Neuropathy). It would be best for anyone interested to look it up and read about it yourself, as I have no special information to offer on the subject. Am hoping someone here might know about it.

    Dr. Michael Arata, the physician and surgeon, appears to have very good credentials. His clinic is called the first Endovascular Autonomic Treatment Center.
     
    Last edited: Mar 7, 2015
  14. Sing

    Sing Senior Member

    Messages:
    1,505
    Likes:
    970
    New England
    Woops! Just found another thread on this:

    What is the TVAM (Transvascular Autonomic Modulation) Procedure? started by allyson on Feb. 24, 2014

    This earlier thread does not recommend it.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    8,309
    Likes:
    8,697
    Albuquerque
    Yes, Allyson cut and pasted it from another source.
    I merged the two threads along with a third one so all the info on the topic should be in this thread now.

    Sushi
     
    Wayne and Sing like this.
  16. charlie1

    charlie1 Senior Member

    Messages:
    208
    Likes:
    148
    Canada
    This sounds familiar. A Dr. Zamboni (I think) from Italy may have been the guy that 'invented' the procedure but don't quote me. There was lots of warnings of the procedure for CCSVI on Dr. Driscoll's website at one time. (prettyill.com)
     
    Wayne likes this.
  17. Wayne

    Wayne Senior Member

    Messages:
    2,377
    Likes:
    1,693
    Ashland, Oregon
    I'm just starting to research this. Called the Newport Beach, CA office and discovered they do accept Medicare. They require $1K upfront, and there would be an additional $2K Medicare co-payment--which means they charge Medicare $10K. Takes about 30-45 min., and not done under general anesthesia. -- I asked what diseases they treat using this technique, and she mentioned POTs, Dysautonomia, MS, and Lyme. I asked about the Lyme results, and she said it varied, with it sometimes taking a couple weeks for them to start noticing results. Here's a link for further info:

    CCSVI and TVAM

    CCSDVI = Chronic CerebroSpinal Venous Insufficiency

    TVAM = TransVascular Autonomic Modulation
     
    ukxmrv, voner, charlie1 and 1 other person like this.
  18. Sing

    Sing Senior Member

    Messages:
    1,505
    Likes:
    970
    New England
    Keep us posted, Wayne!
     
    charlie1 likes this.
  19. charlie1

    charlie1 Senior Member

    Messages:
    208
    Likes:
    148
    Canada
    I wonder why we haven't heard more about this kind of treatment? It's sounds so promising. Unfortunately, California is much too far for me to travel if I did decide to pursue.
     

See more popular forum discussions.

Share This Page