This Is MS Multiple Sclerosis Knowledge & Support Community

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CCSVIhusband wrote:Cece, I went back through, and during your procedure there was a use of oversized balloons (2mm if I did the math properly).

That would be the 10% oversizing that is within normal practice for other procedures too. But with the big balloons, the IRs have gone way beyond 10%. And maybe in CCSVI, not even the 10% is worth risking? These veins are important.

Cece wrote:

CCSVIhusband wrote:Cece, I went back through, and during your procedure there was a use of oversized balloons (2mm if I did the math properly).

That would be the 10% oversizing that is within normal practice for other procedures too. But with the big balloons, the IRs have gone way beyond 10%.

I see, I guess I just wasn't understanding ...

The threads go so fast sometimes (and I was away for a good while) that I wasn't understanding I guess.

How big were they going? I guess I might have missed some of that discussion?

Dr. Cumming,
If you see this post, could you comment on what size balloons you use? What size would be considered too large--or does that depend on what location they are using it on? Thanks.

carollevin wrote:Dr. Cumming,
If you see this post, could you comment on what size balloons you use? What size would be considered too large--or does that depend on what location they are using it on? Thanks.

Balloon sizing is in flux. Various operators promote different approaches with no proven outcomes and often no follow up. Don't believe the hype.

In short we don't know the best way to do it.

Both Dr. Scalafini and I have seen complications and severe restenosis post ballooning. This can only be from oversizing the balloon and causing too much intimal injury (damage to the vein wall).

With IVUS we are hoping that by better selecting balloon size, we can reduce intimal injury and maximize durability. Again, unproven. Time will tell.

Thanks Dr. Cumming,
Would you be able to venture a guess as to when some of these issues such as balloon sizing and all the other details of the "best" way to do CCSVI are better understood by the IRs?-Are we talking months, years, or will there be disagreement indefinitely?

Now that my insurance isn't covering anyway, I am wondering if it's better to wait a few months or 6 months--if by that time more is known and this restenosis and thrombois rates may be lower by then if the technique is improved?

Thanks again.

Unfortunately, we are many years away from any good scientific data. None of the trials underway are addressing balloon sizing. None are using IVUS. In fact, we do not even know what measurements to use to determine a percent stensosis. Dr. Scalafini and I have talked about all these unknowns. Our concern is we do not even know enough to do a good trial. We are really early in the discovery phase. There is a much to be learned. In fact, we know so little about the venous drainage of the central nervous system, that we don't even know what we don't know - make sense ?

Thanks Dr. Cummings,
Yes it does make sense. This CCSVI/MS issue/procedure is new and very complicated.

I appreciate your posts and your responses to my questions. You've been very helpful.

Thanks again.

carollevin wrote:Thanks Dr. Cummings,
Yes it does make sense. This CCSVI/MS issue/procedure is new and very complicated.

I appreciate your posts and your responses to my questions. You've been very helpful.

Thanks again.

You're welcome!

I wish we had some good answers. Its tiring to always be saying we don't know...

DrCumming wrote:I wish we had some good answers. Its tiring to always be saying we don't know...

Don't worry. We can handle the truth that we're in the early stages of figuring out how to best treat this plumbing problem called CCSVI.

I know that I definitely appreciate a doctor admitting that he/she doesn't know something about the human body, especially as it relates to a new discovery as this. As opposed to, oh say certain neurologists saying something as crazy as "Well folks, we've now determined that CCSVI doesn't cause MS".

WeWillBeatMS

I agree. I'd rather have a doctor say "we don't know" as opposed to an arrogant doctor or a doctor who tries to exaggerate the success rates in order to increase business. Thanks for your integrity Dr. Cummings and please keep helping us figure this out!

I always take it as that we don't know...yet.
Time is our enemy and our friend.

DrCumming wrote:Unfortunately, we are many years away from any good scientific data. None of the trials underway are addressing balloon sizing. None are using IVUS. In fact, we do not even know what measurements to use to determine a percent stensosis. Dr. Scalafini and I have talked about all these unknowns. Our concern is we do not even know enough to do a good trial. We are really early in the discovery phase. There is a much to be learned. In fact, we know so little about the venous drainage of the central nervous system, that we don't even know what we don't know - make sense ?

This is quite depressing to read.

And here's another opinion from an IR: a completely blocked/occluded ijv is better than a partially blocked or "pancake" jugular vein. When I asked him to explain, he stated that if the IJV is completely blocked, then the collaterals will handle all of the flow rather than sharing the flow with the IJV....

Not sure I agree, but more food for thought.

Interesting. I wonder if that could explain why occasionally someone feels worse after restenosis than they did before treatment? That is the kind of thing that worries me as I step forward toward this procedure, but I am trying to stay positive as I know the odds are on our side for benefits versus risk.