CCSVI

[healthnut22]

Have you hard of anyone having CCSVI procedure that you know?- my brother may be having it this next week.

[Kiwi_boy]

Ive had the treatment after doing my own research and deciding that it was a fairly low risk procedure and had some good supporting results that it has something to do with the large web of what we are now understanting ms is ie something which may be a collection of contributing factors, at any rate , i had pretty blocked up veins and a nut cracker so weather or not it had anything to do with ms i figured this had to be a good thing to get cleared out.  Ive had a moderate improvment in both fatigue levels and my balance, by no means has it cured my ms but it has given me the ability to do things which i was unable too do prior to the procedure which might not sound like much but can make a huge difference to the day to day life of someone living with ms. Im glad i did it,i have no regrets.    

[shoshin]

I had balloons put in my internal jugular veins (which were two of the veins that Zamboni has also treated, along with the azygous) at Stanford in December. I wrote about my experiences in my journal at http://www.medhelp.org/user_journals/list/333672?personal_page_id=872988.

The This is MS forum on CCSVI probably has the most comprehensive discussion on this topic. They have a tracking thread at http://www.  X  .com/ftopict-8346.html (replace the X with thisisms otherwise it will get bleeped out) where people talk about the effects of treatment.

I hope all goes well for your brother and that the procedure is beneficial for him.

sho

[sammycung]

Best of luck to your brother!

Sammy

[Lulu54]

Here's the news release and the web address for the teleconference.  You may want to hear the program in its entirety.

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206

http://hosted.mediasite.com/mediasite/Viewer/?peid=5625f9f8badd40eab1b1a3ebb41a8ba6

[Lulu54]

Hi again, we have one person here who went to Stanford and had the testing done and a jugular vein opened, which is not the same vein that Dr. Zamboni has identified.  

There was just a big webcast on this topic for the conference of the American Academy of Neurology  and the NMSS.  Dr. Zamboni and several other doctors who are involved in this research were present.

From my understanding of what I have read and what they also said just this week, as of now patients should not be having this liberation procedure done.  There are too many questions still waiting to be answered.

There are some sites in the US doing screening for the veinous insufficiency that Zamboni proposes is part of the MS problem.  This is not the same as  having the procedure done, though.

When you get the time I would love to hear more about your brother and his pursuit of this treatment.  

We're all available here to answer your questions.  So feel free to ask specific ones as you think of them.

my best,
Lulu