A few more CCSVI links

[shoshin]

Medscape's take (fairly balanced; need a free account):

  http://www.medscape.com/viewarticle/716865

Wheelchair Kamikaze has a balance, but hopeful, assessment of the BNAC announcement:

  http://www.wheelchairkamikaze.com/2010/02/buffalo-ccsvi-study-results-revealed.html

There was a recent conference on CCSVI in Hamilton, Ontario

  http://www.ms-mri.com/news.php (watch for updates and I heard there is supposed to be video)

**Is the Basic Etiology of Multiple Sclerosis Vascular in Origin? - E. Mark Haacke
http://www.ms-mri.com/docs/ccsvi-st-joes-feb-7-10-post.pdf

Dr. Haacke is a physicist who has done a lot of work on imaging iron in the brain.

**Preliminary results of preoperative diagnostics and endovascular treatment for CCSVI - Marian Simka
http://www.ms-mri.com/docs/Simka-hamilton%20-ccsvi-1.pdf

Dr. Simka of Poland has been testing and treating MS patient for CCSVI. Interesting, he noticed that "Within one hour postop patients’hands became warm (if cold before treatment) and faces pink (if pale before)." One of the first things I noticed post-procedure were that my hands and feet were warm, which for me was a minor miracle.

Locations and etiologies of extracranial venous lesions in MS - Michael D. Dake
http://www.ms-mri.com/docs/Hamilton%20Michael%20Dake%27s%20talk.pdf

This is the interventional radiologist at Stanford who treated me. His assessment of the short-term (he only started treating CCSVI in June of last year) of the effects of restoring normal blood flow:

"Global symptoms attributable to MS, but not referrable to a specific neuro-anatomic loci (ie., fatigue, headache, heat sensitivity, “brain fog“, urinary urgency,etc.), show short-term improvement and in some cases (low EDSS) completely resolve. This suggests that these particular 'MS' symptoms may be more accurately categorized as related to venous obstruction.

"Early-term follow-up of functional mobility (high EDSS) is not conspicuously changed from pre-procedure."

sho

[Lulu54]

Ooops ... I mean it was NOT a stent.  what a difference one little word makes  :-)

I  was surprised to see that pop up on the MS consortium site  . . I thought I remembered you talking about this and it was old news, but it just made the Neurology Annal in February.  

I hope the spring weather is making you feel perky and good to go!
Lulu

[shoshin]

It is old news as this happened (abruptly) in early December. There were a lot of politics involved from what I can tell. Although a lot of neuros seem to firmly believe that someone died from the procedure, there isn't a clear connection between the procedure and the stroke that killed one person (neither the doctor at Stanford nor her local neuros thought the two things were connected; there have been some reports of strokes after stents in arteries leading to the brain so it is possible that there is a connection, but veins aren't arteries and there isn't sufficient evidence of anything at this time). However, the stroke was clearly exacerbated by the post-procedure blood thinners.

Anyway, the irrationally hostile and patronizing (or so it seems to me) reaction of some in the neuro community just makes me mad so I'll shut up now.

sho

PS I think you meant I had balloon angioplasty, not stents.

[Lulu54]

The consortium of MS Centers just this week posted a summary of a February report on the Stanford procedures using stents.  I think this is old news, but couldn't quite tell, since this was just posted on March 4.  

I thought we might want it added to the list of links that sho has kindly put together.

BTW, Stanford is where Sho went to be evaluated and had a procedure done, but it was a stent.  


News Stanford University halts CCSVI      
Stanford University halts CCSVI treatments after two serious incidents


http://www.mscare.org/cmsc/News-Stanford-University-halts-CCSVI.html

[shoshin]

It's hard to get the right kind of Doppler done right now. Zamboni used a transcranial Doppler, which is apparently not widely available in North America. The researchers at BNAC were also specially trained in Zamboni's protocol. So you probably can't conclude anything from what you had done, unfortunately.

A venogram is an invasive procedure so I can see that you would have trouble getting one done if there isn't any suspicious evidence. I suppose you might also look into an MRV, but those don't show everything. Hopefully, the testing procedures for CCSVI will become more standardized and reliable in the near future.

sho

[coco31]

Thank you so much for posting these links. I have had a doppler ultrasound of jugular veins which was -ve. Now need what I think is called a MRC or CT venogram with contrast - but the radiologist has turned the request made by vascular consultant down citing that there just isn't enough evidence to warrant the scan at this time.

Maybe your links will help convince him that it is worth a go!!!!!

Thank you.

Sharon