This Is MS Multiple Sclerosis Community: Knowledge & Support

When you resume the liberation procedure (note I am being positive here and saying WHEN and not IF ) will your IRB allow the use of stents or are you going to continue not using them?

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call.

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call.

Why do i think this is a known lurker who wants to know how i will treat the second time around. Nice try!

This is an unusual finding that amazed dr zambni when i showed it to him. I wish i had an easy answer, we would not have to do a second procedure if i did!

i think that a stent makes the most sense right now since all the surgeons i offered this vein to, demured with thanks. it is kind of a valve that formed a pocket and that pocket balloons out on ivus to occlude the main lumen. I think we need to permanently compress the valve against the wall.

If i knew how to show pictures here, i would.

sorry madame lurker....we will find out in a few weeks

Dr. Sclafani:

When you resume the liberation procedure (note I am being positive here and saying WHEN and not IF ) will your IRB allow the use of stents or are you going to continue not using them?

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call. I would consider "conservative practice" to do a balloon procedure first, hoping that would be sufficient to solve the problem. While that would clearly be the best outcome, the high rate of re-stenosis would seem that sometimes something more was needed, like a stent in those cases.

I would like to add my thanks to the others for giving us your time and expertise in answering these questions.

Donnchadh

dr S,

i'd like to ask a related question, and i want to phrase this without it sounding like a request for a blanket assertion.

we may be faced with the stent-or-not decision soon, and i'm wondering what your experience has been regarding criteria for stenting the azygos? i *think* i remember reading someone in these 114 pages that you had seen good results without stenting.

as you know, dake in his IR address says his experience has been that azygos issues have needed stenting, in particular for the "candy wrapper" case.

our plan is obviously to defer to the experience of our liberator. i'm just being curious here.

Another question - what would you say to a sceptical neurologist if you had a two minute appointment with him or her to try and persuade him of the merits of CCSVI? In one or two sentences because that's only how much they could stand hearing about it. : )

(I have no idea of my neurologist's opinion on the matter, although when I spoke to him about it six months ago they were absolutely unconvinced. He is very enthusiastic and dedicated to the patient though.)

Thanks!

There was at least once when it sounded as if he had made up his mind to use a stent on a particularly odd ballooning pocket of a valve:



Did we ever get to see the picture? Did you find out in a few weeks or did the IRB process intervene? And who is madame lurker...oh the mysteries!

Cece,

It's no mystery. I am not madame lurker, but Dr .S thought I put Lavonna up to posing the question on my behalf.

I've got the odd pocket/septum that kept clotting closed, but Dr. S will not be using stents for the group when he gets IRB approval. Chances are good that for some of us, stents will be necessary, but Dr. S will not be using them.

Hi Dr.S. Keep up the good work and thanks. Question number 93 on our list of survey questions to you. joke.
I have a question for you. If I had been treated by you prior to shut down and if my symptoms had changed, can I see you again to find out what is happening? If I have restenosis can you re-treat me? When could re-treatment happen?

Today I learned of someone, a friend, that lost her battle with this MonSter. She was only 45. She had been in the hospital for several weeks on saline and steroids. Aren't Doctors supposed to do everything they can to help a patient live? Shouldn't an MS patient at that stage be able to be tested in the hospital in order for Doctors to all they can to preserve life? Isn't the possibility of the vascular connection enough at that point in the course of this disease for them to test and potentially treat? I am disgusted that we as MSers are constantly given minimal care because we have MS and things are just blamed on our disease!!! When did we become second class citizens?!