This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello!

I may have missed a previous post on this subject, so feel free to direct me to another post for your answers. I have seen, on occasion, the mention of open neck surgery for CCSVI, where I understand veins could be grafted/opened differently than which angioplasty.

My husband was treated for CCSVI in Oct where his right jug was found to be VERY narrow but present. It opened without a stent at that time, and my husband had some benefits. Those benefits faded and we went for treatment again just recently in May. This time, the right jug was completely occluded from the valve all the way up to the ear. So, it was deemed too dangerous to treat via angio. They were able to enhance the left jug, which was 50% narrowed and worked on the azygous and lower trunk veins. Unlike the first procedure though, my husband has received very little improvement thus far with this second procedure. So, that right jug appears to be important for him. What is your experience or knowledge of open neck surgery to treat the more severe blockages? Not that I want to jump to surgery just this minute, but I'm curious.

I too have a stent in my left IJV that is completely occluded. I have a consultation with an IR next week to see if there is anything that can be done about it. LR1234, it doesn't sound like there is much hope considering your situation If I had had follow-up on my stents sooner it could have been corrected. My right IJV and azygous were corrected and are OK. I feel that I had my greatest improvements for 5 months after the procedure last August and then things got worse, probably due to the left IJV stent clot. I am still better than before the stents were inserted, but am very bummed out since the fatigue returned Everybody should be proactive and make sure that you get careful follow-up.

ozarkcanoer

All my 3 veins are 100% occluded with scarring. Plus, the 1 stent I have is now pinched and bent at one end. The last 2 doctors, Siskin and Arata said they could do nothing. Arata say I need a vein bypass. I am unable to find a doctor that will do this.

Hi
I had such an operation:
http://www.thisisms.com/ftopict-16008.html

rici
i thought you had a surgical procedure to treat aneusysmal dilatation of your jugular vein with gross venous insufficiency. is that true?

it is far different from trying to operate on a totally occluded vein to recreate a bypass to the skull base.

DrS

boisegirl
it sounds like your husband had a hypoplastic vein that was dilated but would ultimately occlude. i am very discouraged about trying to stretch hypoplastic veins. I never really had one good outcome

Thank you for your comments about hypoplastic veins! That is a new term to me. Could you define it further and how it is different from a narrowed vein? Also, what is your opinion about vein replacement in the case of hypoplastic veins? Is it possible, has it been done at all- even in other parts of the body? Is it safe (as surgeries go)? I could swear I remember watching a video of Dr. Zamboni talking about how/when he uses open neck techniques, but I don't remember the details.

Boisegal, i had the same exact experience and outcome as your husband. Crazy... I too have thought vein by-pass may be my only viable option.

Vein bypass is my last hope. I wonder how many others will be more searching for this.

I have my consultation tomorrow with Dr Suresh Vedantham here in St Louis at the Washington University School of Medicine. I will let you all know if he has anything more hopeful to say except for open neck surgery. He is considered a top-notch IR so I have my fingers crossed. It seems to me like this problem, occluded stents, veins, etc is becoming more common and should be openly discussed by all the IRs who are interested in CCSVI. Why is this so hard to treat ?

ozarkcanoer

Just going by the prefix hypo usually meaning too little or too few, I think, and plastic meaning flexible, I think, it means your veins are stiff. (Brittle?) Again, I think.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Hypoplastic veins have been described as baby veins that never grew up.

I don't think the problem is becoming more common, only that we're hearing about it more as people experience difficulties and go in for their second procedure. If indeed the IRs are backing away from the use of oversized balloons (as Dr. Sclafani indicated, at the March SIR annual conference) and if the oversized balloons were a leading cause of occlusions, my bet is that the problem is becoming less common, not more so.

Stents are also a cause of occlusions and I think we are seeing less stents than we used to. Not sure about that.

Whether it's becoming more or less doesn't help much for people in the predicament of having occluded veins, unfortunately.