This Is MS Multiple Sclerosis Community: Knowledge & Support

Reading every day, so pls keep it coming!

mb

reading...and participating...a lot....

What other media would you branch out to? I can think of CCSVI Locator or Facebook off the top of my head. Joan has repeatedly asked for those who are knowledgeable to pitch in and answer some of the questions in the CCSVI in MS discussion page. It might be a surprise if you answered that call!

GREAT suggestion! There are 20,000+ followers on Joan's page and so many crave, and need, good infornation.

Facebook is getting rid of discussions. If cheer hasn't been notified yet, she will be soon.

Well, isn't it time that ccsvi gets accepted by the medical 'sector'?? How can that be accomplished??

If i hear my neurologist (great guy, no complains) talking about the ccsvi 'hoax'; no proof, no publications....i get the impression it is going to 'fast' for them, they cant keep up.

Suppose it will take many years before progression will be seen on that side, a side necessary to fully explore ccsvi
(ahh, a bit of frustration my dear )

It's being replaced with forums for pages, which is an improvement, and can import the existing discussions:
http://www.allfacebook.com/facebook-pag ... io-2011-10

Cece, that's good news, indeed! This is a perfect solution.

1.The patient had only improvements for one week post-op. Now she is in the pre-op condition, plus pain in the thrombus area.
2.Left jugular
3.Rather occlusive
4.Two months old
5 and 6.Unknown
7.Negative
8.Unknown (overdilation?)
9.There was a valve issue, i guess that the prognosis was good
10.Well, Doctor S, we all listen!

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getafix

pelopidas, do you know what if any anticoagulant she had been on after the procedure?

She has been on clexane 0.4 for the first 40 post-op days. After these 40 days she has been on sulodexide 2x2 per day
this was the initial medical prescription
(later sulodexide was 1x2 per day, due to dizziness. But maybe dizziness was one of the thrombus symptoms)
My friend is a 28 yo woman about 50 kgr (110 pounds) (sorry Cece, this is the real weight)
She had her post -op ultrasound 15 days ago ( a little bit late, the procedure was end of July)
and shows signs of deterioration week by week

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getafix

I don't know if it matters, but I am assuming she was put on those after the thrombosis was found, and had not been on them from the time of the procedure itself? This gets at the cause of the thrombosis, #8 on Dr. Sclafani's list, and if the cause was underanticoagulation. Clexane is lovenox, which is powerful, I know someone who had a bleeding complication requiring hospitalization because of it (but everything turned out fine). If she was on lovenox from the time of the procedure and still clotted, then it could be a clotting disorder or, as you said, overdilatation.

So we could say that the thrombosis has worsed her condition. She went from clinical improvement BACK to her previous condition. To me that is a clinical deterioration and increase in pain. I would manage the pain with whatever analgesic works. Ideally, I would want to diagnose why she deteriorated as soon as possible. While many patients either restenose or have loss of placebo effect, or thrombose. I want to diagnose a thrombosis as soon as possible because time is vein. The longer the duration of the thrombosis, the more damage to the vein, the more organized therombus, the less likely that it can be dissolved, catheterized, lumen restored.

I direct all my patients to get an compression ultrasound of the neck veins within one week of completion of anticoagulation to look for early thrombus. I think this is far more important than a three month Zamboni protocol ultrasound to look for CCSVI. I now skip the three month and rely upon a six month Zamboni ultrasound.


I am not surprised. it seems that the left IJV is far more commonly undergoes thrombosis. Perhaps it is the angle of the axis of the balloon and the vein itself that increases the risk. I wish i could predict why this happens. It is difficult to enter the left jugular vein from below: That makes it harder to catheterize the thrombosed left IJV.


occlusion is bad because it stimulates more thrombus. as long as there is flow. the opportunities to catheterize are greater. Also flow in the vein means that part of the wall of the vein is receiving blood flow and that intima has a greater chance to survive. When there is sufficient thrombus to stop flow, then the intimal layer loses its oxygen delivery and dies. This bodes poorly for re-endothelialization since intima creeps from existing cells to cover the denuded segment.

That clot is getting organized and hard. the chances to dissolve it are quickly disappearing. The harder the clot, the more difficult it will be to get a catheter to traverse the clot.

the length of clot and whether the clot has extended up to the top of the neck are important. if the clot extends up the entire vein, it is more difficult to clear the clot. The bulk of clot means more difficulty in aspirating, dissolving or fragmenting the clot If the clot extens up too high in the neck, the ability to perform rendevous is more difficult.


are we sure? Was she tested for Leiden factor,Protein S and C deficiencies, antiphopholipid syndrome. . Thrombosis does not only come because of the angioplasty alone.

as we said, there are too large a balloon? Did balloon rupture? was there a dissection? Was patient given anticoagulation during procedure? how many times was balloon inflated? for how long?
was patient given anticoagulation after the procedure? what type, how long?
That makes sense. it would seem that the vein is worth trying to salvage. If it had been a long hypoplasia, it might not have much value. and attempts to recanalize might have been fruitless and have unnecessary risks. possibly there are large collateral veins that drain away from the jugular vein.
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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

Dr. Sclafani,

Perhaps you could update us on some issues:

Is the proposed data base of patients up and running yet, and if so, how many people have been treated? Of those, is there data on how many have been re-treated? Are any other useful statistics starting to emerge?

Although it is still relatively early to draw conclusions, does the 1/3, 1/3, 1/3 rule still seem to apply (equal numbers of patients who get great improvement, moderate improvement or no change)?

As you and your colleagues prepare to present your findings at the spring conferences, can you give us some idea of what topics are likely to be discussed?

Dr. S I have been thinking about the number of re-stenosis's and wounder if there needs to be a gradual approach with widening the valves and narrowed veins. If there is IVUS inspection there will be more insight, my thought is that some of the dilation's are 'possibly' to much to achieve the goal in one stage and that the vein may need to be brought to size over more than one sudden stretch?

The other thought is about how often when there is re-stenosis is it in the same area, (this is with you're own patients where you are the only person treating)?

If a person was treated by the same IR is the re-stenosis likely to be in the same place or elsewhere? If for instance if I was treated by you would a local (NZ) IR be able to confidently re-treat, or is it going to be a case of starting from stratch and searching everywhere again because there is no pattern to a re-stenosis or perceived re-stenosis?

Regards Nigel
NZ, Rubgy World Cup holders

We have to retrospectively enter 750 patients already treated into the registry. the electronic registry is still being beta tested. Our new parent company plans to support the effort but the merger is still ongoing.

I have competed two studies and submitted abstracts for SIR meeting in spring. Our Del Mar group has submitted a paper on the hubbard trial.

we are just getting started and have lots more to do

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Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com