Chronic CerebroSpinal Vascular Insufficiency.

[carrie235]

Hi Everyone and Happy New Year,

A friend of mine that is a physical therapist told me about this.  She said she has a patient that has a friend that had MS who received this therapy and the results were AMAZING.  I have not been diagnosed with MS, but fear that I have it...  I'm sure many of you already know my story.

I was wondering if any of you have looked into this.  Stanford does this and I know that people travel from all over the world to have this done.  You can google it and you will see all kinds of stuff about it.  I've been on and off this board for sometime now and have never seen anyone mention it although that doesn't mean you haven't already discussed it.

Let me know what you think.

Carrie

[jujuminx]

It's been discussed but no reason not to revisit it. I am pretty sure Quix wrote a response about it a few months back.  Maybe someone can help find the thread to it as I am not experienced enough on the forum to find it.

I think the bottom line on it was that it showed some signs of being promising but there were some issues replicating the results when done here in the States.  Also, there were problems in the initial test groups? And some of the positive outcomes were only temporary? Sorry, I can't help more than that.

Julie

[jensequitur]

Julie is correct - there are some issues with replicating results.  There's not a 100% correlation between pancaking veins and MS symptoms.  

Also the veins that have been ballooned are flattening back out.  Stenting, unfortunately, is right out - veins get larger as they go toward the heart, so any stent that gets dislodged runs a risk of killing the patient.

However, it is fascinating.  What I've wondered all along is if we have cause and effect misplaced - in other words, what if MS caused vein stenosis, rather than the other way around?

[HVAC]

This thing gets kicked up every so often on the forum. The MS Society and others are now funding research in this area which is good. I have heard many MS Specialists speak on it and they are not to sure at this point. One point made is if it works it should be permanent.

Alex

[Lulu54]

Hi Carrie, this is how enthusiasm and endorsements come aobut when it is purely second and third and fourth hand stuff like a friend of my plumber knows a woman who's son is dating a girl who's mother .... you get the picture.

the scientists are looking at ways of taking all these anecdotal stuff out of the mix and doing some controlled studies of the theory.  The results coming in are definitely mixed.   A part of the MS community if very enthusiastic about this CCSVI idea because it is the first new approach to MS that has been presented in quite a long time.  

We all are desperate for answers.  What is scary about the CCSVI thought though is there are clinics around the world that will perform this procedure if you can come up with $$$$.  You can go to Costa Rica, China, Scotland, Bulgaria and even Saudi Arabia if you have $15,ooo-40,000 to invest.  This is one heck of a price to pay for an unrpoven treatment.  

I just accidentally found this youtube posting last week that address one patient's concerns about CCSVI.  

http://www.youtube.com/watch?v=zVM0-hFkrKo&NR=1

Standford is not doing this procedure right now. One of our members, Shoshin was the last person who had the procedure done by Dr. Dake before he stopped.  He was asked to wait until further tests on the effectiveness and safety could be studied.  

Alex is right that we have kicked this around quite often.  If you use the search this community function you can find lots of posts about CCSVI.  also, check out Shoshin's journals - she has written extensively about her experience. and was just back at Stanford recently for a followup visit.

be well, Lulu