Restenosed twice.going for stents

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

Postby dania » Mon Dec 13, 2010 8:04 am

To stent or not to stent that is the question? I had the procedure and they put in 1 stent and angioed the other 2 veins. Had great improvements that lasted 1 week. Stent developed clots even after being on Coumadin with an INR of 2.7 and that vein stenosed past the stent. Tried a second time, clots were cut up and angioed all 3 veins. Minimal improvements that did not last. Tried third time Doctor said all 3 veins now 100% closed and there was nothing he could do for me. I am now worse than I have ever been.
With stenting comes an increased risk of thrombosis. That they have seen with stents in arteries. Lots of info available with arteries.
My stent is now pinched at one end. What does that tell us? What are we too do?
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Postby onesickrace » Mon Dec 13, 2010 8:05 am

thanks everyone

ccsvihusband, pm sent...

nhe, ill look into the k2/menaquinone today for sure!

burg, i was also on several different meds for the first year, none worked. then and currently, im on tysabri, which i feel has been the leading role in me not having any relapses for over two years. prior to tysabri, i had three relapses in the two months..until a month ago, when i had my ost recent relapse.

that sensation you mentioned of warming from the inside is exactly the same i felt in my arms. it wasnt an uncomfortable feeling, but i wondered, as it was happening, just how warm was it going to get! as for the bladder control, its not as much of an issue as it may be for some. when i gotta go, i gotta go, but im rarely up during the night because of it.

you mentioned flying not being and issue with ccsvi, but what about the effects of a pressurized cabin, the ups and downs of numerous flights, and just simply having ms. ive flown maybe ten times in the last three years of my diagnosis, but the last two times, early november and again last week, i feel like its kind of ruined me for a day or so afterwards. in november, flew on a saturday, had my relapse on sunday... i was on oral prednisone for 3 weeks after that. started going thru the withdraw feelings, then flew round trip a second time last week, and now im feeling horrible once again... its not relapse bad where i cant get out of bed, but its feeling of my muscles not wanting to last thru the day...

and also, the larger balloons. personally i dont want to go thru with the procedure not working again. so ballooning wouldnt work for me unless there was some kind of guarantee that if it didnt work or solve the problem, i could go back for stents for free. the mental breakdown that i went thru twice was more than enough for me...

rosegirl understand the feeling of wanting to wait. i was in the same boat and pretty positive on the whole situation, but i feel that im getting to a point of not being able to wait much longer. i recently moved to the bay area and theres seemingly no docs i can find that are doing the procedure here, so treatment isnt as accessible as i wish, so consider yourself a bit lucky in that aspect! i do wish you the best of luck with your situation and hope it goes smoothly when the time comes.
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Postby burg » Mon Dec 13, 2010 10:30 am

These people are doing CCSVI on the west coast. This is from their website..

Pacific Interventionalists performs over 20 venous procedures a day including central venograms, central venous angioplasties and venous stent placements giving us one of the highest volume centers on the West Coast. Our understanding and experience with the venous system and related disorders makes Pacific Interventionalists well positioned to be a leader in the treatment of patients with Chronic Cerebro-Spinal Venous Insufficiency (CCSVI).

Dr Petrov and Dr Grodzinski said that flying is not really a problem. I had headaches after.I believe I remember Dr Sclafani discussing it also on his board.
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Postby Loobie » Mon Dec 13, 2010 10:42 am

sent you a PM
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Postby onesickrace » Mon Dec 13, 2010 6:26 pm

loobie, never got the pm. i checked earlier today and decided to wait til i got home from work to check again and nothin!
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