WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????

Postby gallery23 » Sun Mar 10, 2013 6:41 am

recently diagnosed with PPMS.
i WOULD LIKE TO ASK IF ANYBODY HAS had this treatment. if it has been successful for primary progressive MS SPECIFICALLY.??????
NEWS IF CCSVI CAN HELP WITH THIS PPMS.
I live in Ireland but can travel. If there is any other procedure that can help with PPMS.
Thanks..................
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Re: WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????

Postby jimmylegs » Sun Mar 10, 2013 7:19 am

g, please note related topics listed at the bottom of the page. might be some info of interest in there.
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Re: WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????

Postby Cece » Sun Mar 10, 2013 1:11 pm

Sorry to hear about your diagnosis.
Here's an abstract from Albany Medical Center:
http://tinyurl.com/b6t9mrv
213 patients were treated during the study period. The study population consisted of 192 patients (mean age 48.5 years; 34% male and 66% female) for a 90% response rate (mean response time 109.4 +/− 39.6 days). MS subtypes included relapsing remitting (RRMS) (n=96), secondary progressive (SPMS) (n=66), and primary progressive (PPMS) (n=30). 189 patients (98.4%) underwent angioplasty (PTA) and 3 patients underwent PTA with stent placement (1.6%); 2.2 vessels were treated per procedure. In the 192 patients, the mean PHS and MHS changed from 43.2 to 52.4 (p<0.05) and from 57.1 to 65.2 (p<0.05) respectively. PHS/MHS improvement was seen in 77%/74% with RRMS, 59%/50% with SPMS, and 77%/70% with PPMS; these changes were all significant (p<0.05). However, SPMS patients were less likely than RRMS and PPMS patients to improve their PHS (p<0.05) or MHS (p<0.05). PHS/MHS improvement was seen in 74%/71% with <5 yrs since dx, 78%/78% with 5-10 yrs since dx, and 66%/60% with >10 yrs since dx; these changes were significant in all groups (p<0.05). However, years since diagnosis was not associated with change in PHS (p=0.239) or MHS (p=0.071).

There were 30 patients with primary progressive MS in this prospective nonrandomized study. Everyone was treated for CCSVI. Physical health improvement was seen in 77% of the PPMSers and mental health improvement was seen in 70% of PPMSers. Both RRMS and PPMS fared better than SPMS.

There are randomized controlled trials underway currently but it is going to take years.
I had the procedure done but I am RRMS.
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Re: WHAT EVIDENCE THAT CCSVI WORKS FOR PPMS????

Postby JCB » Tue Jul 30, 2013 6:13 pm

I was diagnosed with PPMS in 2007. I had my first CCSVI treatment in Albany, NY, in 2010. I have had multiple other CCSVI treatments in Minnesota since then. My left side jugular just will not stay open, but my right was opened up and remains open. I still can't walk very well, but have stabilized. I can sweat now, and the heat doesn't shut me down like it used to. I can even go in a hot tub, and get out on my own.

I believe there is something else going on, but CCSVI is definitely connected to this mystery (at least for me). I would do it all again.

Wish you all the best.

Jim
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