No no no, your neurologist has got his wires crossed, he's just described the MO of a Pharmaceutical.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.
Is there no where a little closer to home that may be able to assist.
New York perhaps?
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http://www.ccsvi.org/index.php/patient- ... experience
all of the peer-reviewed publications on CCSVI, now almost 300 papers:
http://www.ccsvi.org/index.php/componen ... ask=search
videos from the experts exploring CCSVI
http://www.ccsvi.org/index.php/the-basi ... csvi-video
my husband was treated for venous malformations, not MS. Four years later, he has a reversal of gray matter atrophy, no MS progression, no new lesions, better cerebral perfusion. You can see his video on the CCSVI Alliance site linked above, where he talks about his personal experience. His name is Jeff. There is something to CCSVI research---I hope you get more answers, vw.
dx dual jugular vein stenosis (CCSVI) 4/09
Your neurologist has a point: we have a problem with medical tourism with CCSVI.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.
My own doctor (Dr. Sal Sclafani) has published academically
http://www.techvir.com/article/S1089-25 ... X/abstract
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.
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.
The longest my jugular vein has remained open post procedure is three months. Some of the results that have remained are the ability to sweat, heat doesn't bother me, my cog fog is much better if not gone (don't ask my wife). I had lost the ability to touch my nose with my right hand, I have that back.
I still limp, and my right arm is still pretty much useless. My first procedure was Sept. '10 my physical abilities are about the same. When I started this, I was just hoping to stop the progression. I have to remind myself of that multiple times a day, I still want it all back.
Would I do it again......ABSOLUTELY, I can't vouch for the Germany location, but I would pursue.
I just feel healthy, even if I can't do the things I used to do.
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