This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All!
Our polish ms community suffer from lack of info about possible side effects of stenting,and all we hear from our neuros is bunch of threats (we think that's their way to stop us from trying to go ccsvi way) So I would ask You to help prepare list of possible side effects.This will help us to make decisions.We tried to compare risks of stenting of neck veins to stenting of superior vena cava,but it is not the same,so we think it would not be wise to go this way...so please ,help...or point us to place where we can learn about it.

best wishes to All

Hi Kinga,
my neuro still does not know what I did. I am only in contact with her colleague - also neuro. She is excited. But I do not ask them what they think about it.
It is much more risky to drive a car than having a stent. Many of us drive a car every day.
These are just my simple thoughts.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Thanks Erica!
My neuro also have no idea that I'm in but lots of people from our forum repeat myths and terrifying news they heard from their docs...so we thought that facts from experienced doctors and patients will help sort this out and see things clearly.

If they need and want to consult it, they should go to see angiologist or vascular surgeon or interventional radiologist or interventional radiologist. They usually insert stents so they should know.
I think neuro does not have anything to do with stents.
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

I think neuro does not have anything to do with stents.
Erika[/quote]

And that's the problem with the neuro's in my opinion. If i do not understand something, i ask somebody who does understand it.
Why do the neuro's don't communicate with the vascular specialist in this case.

Rob

it's not that simple...waiting time for specialist consultation is usually six (6) months,depending of location.You can of course do it for your money,but it is expensive,so just a few is able to do it this way...and people want to know it NOW,before they will start to spend their money.And beside money problems...regular vascular surgeon will not tell you about risks of stenting in this location simply because he never did such a procedure,he only can speculate about it if he will be kind enough to hear you out.I tried that myself ,didn't help

This is dr Simka's answer when I asked him the same question. I hope this is helpful:

"Actually, stenting in Katowice is performed by vascular surgeons. All two stenting procedures were not performed by myself, since I have experience mostly in open venous surgery. It was done by my colleague, Dr. Ludyga who is vascular surgeon, and with assisstance of another vascular surgeon.
Stenting of occluded vessels is currently a routine procedure. Yet, complications are always possible. It is very difficult to estimate complication rate for this new procedure. In a case of stenting of other veins the most common complication is the occlusion of stent with thrombus, but this is usually a consequence of stenting of a disesed vein (post-thrombotic). In MS patients veins are healthy, they are only either hypoplastic, or occluded by pathologic valve. Therefore thrombosis is unlikely. Other complications include mechanic fracture of a stent (resulting in reoclusion) - this can be managed by restenting or balooning. A migration of the stent is also possible, but it is very rare complication."

Thanks Sesj!
so we have these so far:
1.thrombosis (rare)
2.mechanical fracture of stent (very rare since I saw someone trying to break the stent with no success)
3.migration (very rare)
4.accessory nerve damage (thanks Zap!)




So far it doesn't look scary at all

Also possible is nerve damage to the accessory nerve, if the stents are placed high up (heals, but has caused some patients shoulder pain for weeks or months afterward)

on edit: more info here: http://www.thisisms.com/ftopict-8648.html