vw35qrt wrote:my neurologist who is from Washington University School of Medicine in the MS area has claimed the CCSVI treatment is not proven yet as effective in treating MS. He claims it is a way for clinics around the world to get money from people without providing any academic evidence that it improves conditions for people with MS. Let me know your thoughts on this as someone who went through the CCSVI procedure.
Your neurologist has a point: we have a problem with medical tourism with CCSVI.
My own doctor (Dr. Sal Sclafani) has published academically http://www.techvir.com/article/S1089-2516(12
and participated in a consensus panel for development of a research agenda for CCSVI http://www.nhr.se/PageFiles/6860/SIR_Re ... ne2011.pdf
and presented at conferences academically.http://www.ccsvicare.org/outreach_update03.html
He was the second IR in the country back in 2009 to perform a CCSVI procedure. He has also, starting in early 2010 when there was much misinformation swirling around, maintained a thread here at thisisms.com, educating patients. So I can't vouch for all the clinics out there but I was comfortable with the academic contributions being put forth at his clinic.
MS is a tricky disease to research. It's generally required two-year trials with expensive MRIs as measurements. It is not clear what the association between CCSVI and MS is. I believe CCSVI needs to be studied separately from MS. It is a vascular condition, with some symptoms that are entwined with MS symptoms, so that the CCSVI symptoms are mistaken for MS symptoms. CCSVI needs funding for research and, yes, it needs IRs who are willing to research academically, not just IRs who willing to treat clinically. The reason they can treat is because angioplasty is approved for treatment of blocked blood vessels.
I knowingly chose to seek treatment before the research was all in. It helped that I'd had a doppler ultrasound done, which showed major malformations in both jugulars, and an MRV, which even my neurologist interpreted as having major blockages in both jugulars. So I often think that if people are considering CCSVI treatment but are hesitant, they could first consider seeking CCSVI diagnosis, if there is anyone local who has experience with CCSVI-specific ultrasounds or MRVs. It's possible that plethysmography, which is like a blood pressure cuff for the neck, could eventually be an operator-independent diagnostic tool, but that's not established yet outside of one or two small studies.
We'll get the next batch of research coming in during the winter's conferences (ISET, SIR, ISNVD).
Let me know if that helped answer the question! I get talkative on this particular subject.