serious questions...

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

serious questions...

Postby Hoping4thebest » Tue Sep 29, 2009 6:12 am

I have been lurking here for a while so I talked to my neuro about it yesterday. Let me say up front I had decided I wanted to do this, I have a phone call in to Alex about it. My guy told me he really thinks that this hasn't been studied enough, he is worried that Dr. Dake is pushing the envelope, that he thinks the ballons are a better method - and that he has heard rumors that one patient did end up with a serious brain bleed - anyone heard anything about this? He also is worried about nerve damage in the tunnel.
Now I don't trust any doctor totally, so I took all this with a grain of salt. I am still leaning towards going for it, but now a little more worried, hopefully I will hear from Alex soon-- BUT all I read is good on this forum (except for Loobies shoulder) has anyone heard anything bad about this?
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Postby cheerleader » Tue Sep 29, 2009 7:37 am

Hi Hoping-
There have been complications in this procedure, and your doctor is correct to caution you. A few people (more than Lew- and maybe they can comment) have had what appears to be accessory nerve damage. This nerve comes down out of the jugular foramen and crosses the IJV between C1-2 in the cervical spine....this is right where many have stenosis blockage, and the stent is putting pressure on the nerve. This area of the neck is a tight space...and if you make room for the stent and an open IJV, there is a risk the nerve may get pushed out of the way. Marie can speak more on this, but her physiatrist has told her that in her case, the nerve is regenerating and should heal completely. My husband had shoulder pain and spasm, but no long term nerve issues. This is new territory for stenting. Venous stenting has been done for many years in other parts of the body with good patency and long term results, but there are not many folks with IJV stents.

Being on coumadin is also a risk. Read up on the blood thinner protocol. We had a beloved member here at TIMS, Holly (peekaboo) who died. She had a stoke- unrelated to her procedure-but her being on coumadin did not help. Her INR number was not very high, and it may have all been a horrible coincidence, but your doc is right about the blood thinner. I was so relieved when Jeff was done with that.

So, there are many things to think about. This is surgery, and it carries risks. We didn't know what those would be five months ago when Jeff has his stents put in. We know more now, but we still don't know the long term patency of stents in the IJV. You need to talk about this with you doctor and be fore-warned.

In my husband's case, he is very happy he did this, and the end of his fatigue, heat intolerance, better sleep, less pain and spasms is his reward for being a guinea pig. The ballooning did not work for him- his jugs needed the stents to stay open.

Hope this answers your questions-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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