exploring CCSVI

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

exploring CCSVI

Postby vw35qrt » Mon Dec 17, 2012 11:19 am

I have recently been diagnosed with Progressive MS and am exploring the idea of going through the CCSVI procedure. I am considering the procedure available through the CCSVI center in Frankfurt-Germany. I am an American, but have relatives that live in Frankfurt so there is a comfort level in using that facility. Does anyone have any feedback on using that facility
vw35qrt
Getting to Know You...
 
Posts: 14
Joined: Mon Dec 17, 2012 11:02 am

Advertisement

Re: exploring CCSVI

Postby Cece » Mon Dec 17, 2012 11:36 am

I'm sorry to hear about your diagnosis. I don't have information about the Frankfurt facility but I have had the CCSVI procedure elsewhere so could answer any questions about that. All the best
Cece
Family Elder
 
Posts: 8957
Joined: Mon Jan 04, 2010 4:00 pm

Re: exploring CCSVI

Postby vw35qrt » Tue Dec 18, 2012 3:33 pm

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.
vw35qrt
Getting to Know You...
 
Posts: 14
Joined: Mon Dec 17, 2012 11:02 am

Re: exploring CCSVI

Postby EJC » Tue Dec 18, 2012 4:36 pm

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.


No no no, your neurologist has got his wires crossed, he's just described the MO of a Pharmaceutical. :wink:

Is there no where a little closer to home that may be able to assist.

New York perhaps?
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: exploring CCSVI

Postby cheerleader » Tue Dec 18, 2012 5:02 pm

Please visit www.ccsvi.org to read accounts of treatment from real patients
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.
take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 4939
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Re: exploring CCSVI

Postby Cece » Tue Dec 18, 2012 7:29 pm

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)00025-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.
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.
Cece
Family Elder
 
Posts: 8957
Joined: Mon Jan 04, 2010 4:00 pm

Re: exploring CCSVI

Postby JCB » Tue Dec 18, 2012 7:53 pm

I also have been diagnosed with PPMS, I have had multiple procedures trying to keep my veins open. I am not seeing the same Neurologist I saw when I was diagnosed. He had no use for CCSVI, but didn't really offer any hope or alternatives (he is a well known MS expert). It was a friendly break up.

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.

Jim
User avatar
JCB
Family Elder
 
Posts: 141
Joined: Wed Apr 21, 2010 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users