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


Postby dania » Sat Sep 10, 2011 6:39 pm

I was thinking of that but I cannot remember where the link is. Do you?
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Postby CindyCB » Sun Sep 11, 2011 11:24 am

Cece wrote:Dr. Arata is no different than the other doctors in thinking that CCSVI is primarily a disorder of the valves. Dr. Gilhooly in the UK published this letter last week saying this as well. Dr. Arata is different in his approach to treating the valves, but he is more aggressive (breaking the annulus, not just ballooning the leaflets). There is no research to support that this is correct and there is clinical experience from some of the other doctors to indicate that it leads to greater complications, not fewer.

Here is the relevant quote from the letter posted above:
Treating the valves and other intraluminal abnormalities is therefore a central issue in the treatment of CCSVI and one that all the treatment centres in the world are dealing with. A balance has to be struck however, between aggressively treating the valves with high pressure balloons to reduce venous hypertension, and the possibility of vein damage. Excessive pressure could cause scarring and possibly further venous problems.

I also have had relapses associated with long flights. One 8 hour flight to Hawaii from Atlanta and one to NY from Spain. It's particularly noticeable since I have had only a few relapses in my MS journey.

CindyCB, it sounds like you are making the choice that is right for you and that CCSVI treatment is always available if you change your mind. It's interesting that thyroid disease is part of your clinical history because one of the collaterals with CCSVI are the thyroid veins, which may then mess up the thyroid.

BadCopy, I agree with Dr. Cumming that IVUS is the best tool for determining what is causing the stenosis. On flouroscopy as part of the procedure, the IR might see the narrowing, but on IVUS they might see the exact cause of it when it is abnormal valve leaflets, which is most commonly is. With IVUS they can check the valves and, if they are bad (they look like little white roadblocks stuck out from the vein wall, with the flow diminished at that site), they can use IVUS to measure the vein size and balloon precisely so that the valve is ballooned but the healthy vein it is attached to is not overly stretched. It is of interest that our two MN docs, Dr. Cumming and Dr. Snyder, are both using IVUS. Dr. Cumming has been using it for quite some time and Dr. Snyder made the comment after Dr. Sclafani's symposium that he will be using it. My own CCSVI issues were caused by abnormal valves with fixed leaflets. My left jugular had the more aggressive ballooning based on the size it is and it is the one that closed up afterwards (although not as bad as it had been initially) and needed reballooning in July. Outcome has been excellent, so far....

You say you suspect the valve issue is a player in your situation, I would agree based solely on odds! Dr. Sclafani has said that 75% of the cases he's treated have been abnormal valves, which leaves 25% to be hypoplasias, membranes, webs, and assorted oddities.

Without really knowing too much about the subject I kinda feel like current approaches with 'breaking' and 'ballooning' seems too aggressive and have always felt that trimming the valves where there are problems would be a better approach - but then again perhaps they can grow back? Does anyone know any research on this with perhaps heart valves etc?

I wonder if anyone has similar issues to me with assymetric leaflets? They appear to be working but slowing the flow down...

Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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