A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post by AJWANTSACURE » Thu Aug 26, 2010 8:51 am

I Hve an appointment sept 22, 2010 to get screened and treated for CCSVI.

My wife is concerned that ballooning (angioplasty) if necessary will not last or work at all.

What are ur thoughts on angioplasty for CCSVI and how often or what would cause the balloon not to work?

Thnx, AJ

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Post by Billmeik » Thu Aug 26, 2010 9:27 am

My veins closed again, but they weren't that closed in the first place.

Material has memory. It goes back to the way it was. Other times not, like when you unflatten a garden hose and it stays open.

it's luck of the draw whether a stent is needed.

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Post by Farmer » Thu Aug 26, 2010 10:22 am

It looks as if my veins closed after 11 days of the procedure. I am going back and will ask for stents.

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Post by selkie » Thu Aug 26, 2010 10:31 am

Discuss that with the doctor. It's a possibility with ballooning and stents. You might want to check out the symposium videos of Dr. Sclafani and other IRs addressing this by various means (different size/type balloons, ballooning more than once, etc.).

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Post by lucky125 » Thu Aug 26, 2010 12:07 pm

Dr. Zamboni reported that 47% of the patients in his study restenosed within 9 months.

In many of our experiences, the numbers are higher than that. I began restenosing after balloon angioplasty after 2 weeks.

I was retreated almost 1 month ago and still feel fantastic. I can't say if it was the technique of a different doctor, that my veins were already somewhat damaged (in a positive way) and therefore are holding longer, or some other reason.

That is why it is so important to try to have this treatment as close to home as possible. It is not a one time deal in most cases, regardless if you have stents or not.

Best of luck to you on the 22nd!
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11.

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Post by oreo » Thu Aug 26, 2010 12:29 pm

To answer your question:

" often or what would cause the balloon not to work? "

Plenty. Muscles, tendons, ligaments, nerves, glands, arteries, bones.

This is the problem with this whole CCSVI thing as I see it. While less than perfect blood flow may be a problem for MS as well as a host of other diseases, this whole ballon / stent approach addresses only the symptom, not the cause. Stenosis of a vein MAY cause a problem with blood drainage and flow. However the next question to address BEFORE doing anything is to determine the actual cause of the stenois.

There is a wonderfull image on Dr. Haacke's site (Case 3) that shows stenois of the jugular caused by a bone overgrowth adjacent to the vein. All the balloning and stenting in the world will not correct that problem for very long.

Some people with stents - which for the most part were designrd for use in arteries - complain about pain. The interesting thing about that is that veins have no sensory nerve endings. They cannot 'feel' anything. Any pain felt therefore must be caused by pressure being placed by the stent on tissues outside the vein.
Carpe Diem

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Post by CureIous » Thu Aug 26, 2010 12:36 pm

For awhile it was a favorite bloodsport online to knock stents and push angio since it seemed to offer a 50/50 chance of staying put, according to Zamboni's numbers. So flip a coin, the numbers as stated above are probably a bit higher for restenosis, which can happen with stents too, just far less likely.

Some are striking a compromise, which is not a bad deal either if you have good insurance, or are rich enough to fly overseas 2-3 times, or cross the border from CA and pay cash in the states, that being go for angio once, maybe twice, if it doesn't stick, go for stents.

Some of us don't have such luxuries and rolled the dice with stents, so far 1 year+ post op, so good. So if you can afford to do the multiple rounds deal, do that, wanna roll the dice, do that too. Otherwise stents are the only alternative, as maligned as they are...

Good luck.

RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video:, Virtually symptom free since, no relap

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Post by Donnchadh » Thu Aug 26, 2010 6:10 pm

This is a real issue for me; I have had two liberation procedures done by two different IR's. They both found the exact same stenosis, in the same location. Each ballooned me there; no stents.

After the first procedure, I felt great for 5 days but then the IJV's re-stenosis and all the symptoms returned. After the second procedure (where the IR opened up the left side bit not the right IJV), the improvement in symptoms has been maintained for a couple of months now.

At one time I was gung-ho for having stents implanted but now I am thinking that aggressive ballooning might be a better choice. However because CCSVI is a vascular disorder each case is different and treatment varies.

I would suggest a second ballooning attempt before using stents; they are basically permanent once implanted.

Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

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Post by Cece » Thu Aug 26, 2010 7:32 pm

I see it as that if you choose angio only the first or second time around, you can always choose stents later (and know that you had exhausted all other current possibilities) but if you choose stents, you can't later unchoose them.

Sinan's uber-ballooning is exciting, I hope that holds up.

I also think we do not know how the stents fare in the long-term. In angio, the risk of restenosis is from the elastic recoil, as mentioned in a post above, and clotting is not as likely (hence some docs choosing not to put the angio-only patients on blood thinners, when they'll always put stented patients on thinners). But in a stent, the risk of restenosis is from overgrowth of the vein wall or clotting. So it's a trade-off of one type of risk for another type. Once the docs get it all sorted, then we can trust their 'best practices' decision. Until then there is so much for us to figure out on our own.

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