This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear Dr Sclafani,

I have been following your most interesting and illuminating answers to various questions from different parts of the world.

I have been intrigued by the restenosis experienced by most MS patients. While I understand the reasons for re-stenosis when it re-ocurrs at the same spot which was ballooned, some patients have been reporting stenosis in areas that were apparently normal at the time of the initial doppler/MRV exams.

Could there be some yet unknown mechanism in CCSVI/MS that causes the normal parts of veins to stenose after ballon angioplasty/stenting?

It would be nice if MS Societies the world over starts working on these issues rather than sit on their hands waiting for pioneers like you, Dr Dake and Prof Zambonie to come up with all the answers.

Kind regards.

Dr. Sclafani,
How long do you think the collateral veins remain viable? I mean after they have stopped filling because the blockage in the jugular is fixed, will they forever be there ready in case the blockage happens again or will they stay permanently closed at some point?
Thanks!
Rhonda

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Dr. Sclafani,

I was " liberated" a couple of weeks ago here in the States. I had blockage in my left jugular and the azygos. Since that time, I have rested most of the time as I keep reading on this board that you should take it easy and get lots of rest following the procedure. Although I didn't feel the instant eurphoria of better balance just after the operation, some of my condition has improved slightly and others worsen(it is harder to read or focus on small text for example)
I lifted my arms(starting at the sides of my waist) the other day and I noticed I could barely left my left arm. In fact, it started hurting when I tried to lift it for a few seconds. My whole left side was weak before and after the "liberation". I wonder if this could be as a result of blockage in the iliac, lumbar, or vetebral veins. Any ideas or comments?

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Dr. Sclafani, we are still waiting! Or have we missed the boat? Could you please contact John or I? Thank you so much, Billie and John in Upstate NY

Dr. S,
Cece brought up some good points for SIR to consider about standardization. May I suggest a few more? Specifically,
1. to IVUS or not to IVUS?
2. should all veins be looked at or certain veins only? what about those not visible on the doppler?
3. should the procedure itself be standardized, i.e. which side to enter, which veins to look at and in what order?
4. what about valves?
5. should the procedure be done all at once or divided into two sessions? there are doctors who do both now. What are the advantages and disadvantages?
6. should doppler ultrasound be part of the testing protocol for MS, really a neuro-vascular disease anyway...just begging for a name-change
7. I don't know if I'm straying too much on this one but what about preventitive care for neuro-vascular disease? Should screenings like the Doppler be done before any signs of neuro-vascular disease are present the way a routine mammography or colonoscopy is done? And if so, for everyone or should a certain population be targeted, such as persons with neuro disease in the family, persons who have suffered head trauma, etc.?
8. should regular screenings/check-ups be part of the after care? perhaps to ward off re-stenosis? to see how patient is responding? or maybe only to learn more?

Just my two cents..... [/list]

A few more ideas on the SIR group question:

The demand for CCSVI treatment has already been high, but as soon as it is proven or proven enough, won't there be a situation where 500,000 MSers in the US all want immediate treatment? If that situation is coming, and maybe you know better than me if it is or isn't, then triage becomes a possibility. Will the SIR group figure out who should be treated first? Or can it remain first come, first serve in such a situation?

Another one is not an immediate concern, but as a parent, I'd like for the opportunity to have my children tested for CCSVI. Even if it's not possible to do the treatment at this time, because they are very young. But it would be huge to know which child I maybe don't have to worry about anymore and in which child my worries are confirmed. I get that this is not an immediate concern for CCSVI researchers, it's looking to the future when things are on fire right now/there are people with active MS right now. But as soon as I hear of a pediatrics imaging study, I am all over it.

sorry for the intrusion Dr S...

I share your concern Cece even if it was a Huge relief when I realised that my CCSVI was "probably" caused by radiation from cancer more than because of bad genes.
Still... I keep forcing my son to take his vitamin D!!!
If we can correct the veins before there is brain damage and before the bad shape is imprint (less restenosis)!!

One of the MSSC/NMSS studies being run out of Toronto is on CCSVI in pediatric MS cases.

Vivavie, my kids have their vitamin D 'gummies' too. I know it helps, but still...5% chance of MS per kid....

We talked about pediatrics and CCSVI here back in April, it's a concern that a lot of us share, I think.

Thanks for the reminder. Huh! I knew about that one.

Apologies for the off-topic. My question for DrS would be, "Exciting things??? And how do you define hopefully soon, is it made of hope or made of soon...." but I understand if you are not able to say more at this time. Patience, my patients, was easier in April.

Rhonda, here is drsclafani's answer to, for me, similar question, here on page #2:



Best regards, M.

San Diego..Hubbard Foundation?

never mind

Hi Dr. S me again. A friend has asked "Where could I find out about the efficacy and safety of using bigger balloons? The medics here are so touchy about trying something new. They need to see evidence in peer reviewed articles blah blah blah."
She has had treatment and didn't have much inprovement. She is thinking she will need to re-scan and look at getting more info to the IR to give him some inspiration and confidence.
Nigel

I am sorry but i am preparing for the northern ireland debate

Please understand that the group that will assemble to address ccsvi treatments in the society of interventional radiology will discuss areas of concern, research need and design, and similar topics related to ccsvi, not ms

so, for example, i would want to evaluate

indications for stenting, anticoagulation standardization, followup imaging type of frequency, size of balloons, indications to treat, etc

so what exactly are you guys interested in us studying as it relates to the treatment of ccsvi

patience my patients

good things come to those who wait

a little longer