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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

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

Cece wrote:
DrS, I'd like to see the SIR group figure out how to get to standardization quickly. What's the best imaging, the best ballooning techniques, the best catheter tools, the best after-care? How do you get every patient here the best outcome they can achieve? Where is the 'just right' between under-treatment and over-treatment?

If we are moving out of the era of travelling for treatment and into an era where most major metropolitan areas will have a CCSVI treatment site, then how much more emphasis should there be on after-care? There is restenosis, there is thrombosis, this has never been a one-treatment-and-done deal.

If there are any areas, such as the azygous, that tend to be underdiagnosed, then how can this best be taught to help every IR treating any of us to find all the CCSVI malformations that are present?

Another big issue is stents. 'First do no harm' -- what if stents turn out to be a terrible choice in CCSVI veins? What are the long-term consequences? What if stents are fine but they're being placed in physiological narrowings instead of true stenoses?

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)!!

Cece wrote:A few more ideas on the SIR group question:

.... But as soon as I hear of a pediatrics imaging study, I am all over it.

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.

nicknewf wrote:

Cece wrote:A few more ideas on the SIR group question:

.... But as soon as I hear of a pediatrics imaging study, I am all over it.

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

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.

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

drsclafani wrote:

My wife has some concerns, her main one being - if ballooning is done on a stenosed vein and it has collaterals, we understand the collaterals will wither up. Then suppose a few months later the stenoses re-occurs. Since the collaterals are gone, would this make the blockage even worse than before the procedure?

You are on a highway. the road ahead is blocked by an accident. So you get off and take a service road around the accident. You are not the only one so the traffic on the service road grows.

then the accident is cleared and the road is clear sailing again.

the service road goes back to little traffic.

unless you permanently barricade the service road, it will again be used to bypass delays.

same with the veins. they will shrink but they generally will not evaporate

have a nice trip!

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

1eye wrote:

Cece wrote:

drsclafani wrote:
i could live with that. I like steam rooms and would love to treat patients ASAP!!

No need to sedate your patients if you follow through on this plan, the heat will do that for ya!

drsclafani wrote:SIR is convening a group to establish foci for research and recommendations for training. I have been invited to attend, mid October.

As your partner in crime: please give me some of the things that you want assessed and researched. i will share during the meeting

This is a remarkable offer.

Yes, it is. Please get to the bottom of the heat sensitivity thing in a formal way, so that people can know what it is and what it is not. My current belief is that it is a problem with drainage of the thyroid gland. When it cannot drain hotter blood out it cannot get cool. So I find cooling my thyroid directly is a short-term fix. Recently it has been speculated that something else is wrong in the drainage from within the brain. I don't know about that but of all my symptoms, left leg and foot paralysis and heat sensitivity are the most fixed and unchanging. To know more about why these happen is primary for me.

Next, I wonder why my task-switching is so slow and laboured. I have also heard this described as slow processing of new data. It, as well as all my other symptoms, seem to be heat-sensitive. So that above 73 degrees, I really fall apart. It's quite dramatic.

Thanks.

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

elliberato wrote:Sal,
you know more than all these guys combined. Why in the hell arent you treating?

patience my patients

good things come to those who wait

a little longer