Post-Treat questions

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

Post-Treat questions

Postby Saskatoongal » Sun Aug 22, 2010 8:20 pm

I am going to Bulgaria in December. I have a couple of questions which I hope you can answer. Does anyone actually know of articles published recording follow-ups of people who actually had the procedure. All the research I have read is from people who have recently went. How are people doing say a year after the treatment. Is this a temporary treatment? Also for those who have went, what were the side effects after (fatique, headaches...) I have to come back to Canada, am wondering if I should find a place to relax before flying back. All the best!!
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Postby CureIous » Sun Aug 22, 2010 9:39 pm

This site is about as close to a published long term result as you will find online. You seem to be asking two things, "scholarly research related stuff" and personal stories, if I read between the lines correctly. You'll find no other site on the internet besides this one that has a broader range of treated people though many have left to pursue other interests. I'm a year out, actually closer to 13 months. There's others here too. There's also a tracking thread upstairs with many reports. If you are trying to gauge though where you may be in 1-12 months time by singular reports, your head will be positively spinning after awhile. YMMV has never applied more. I'm doing great, same improvements as last year stayed stuck. Haven't looked back. But that's just one voice, there are others. Side effects, yeah there were some, 3 months post-op not even worth a mention to be honest with you. Some pain, nothing unmanageable. Some had it worse, some had it better. YMMV squared. If it were me, I would try to maintain as much space between the procedure and the airplane ride as I could, just in case. Make sure you have some kind of gameplan for when you get home, for aftercare. The mantra is to go local of course, have you considered going across the border into the states or is that out of reach financially if I may be intrusive.. Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Johnson » Mon Aug 23, 2010 1:24 am

Dear Melonhead Gurl,

I had no side effects from venoplasty - other than a curious new level of energy, balance, ability to look up, run, a renewed interest in life... The benefits were short-lived for me, but worth every effort. I will return for round two soon. One other side effect that I had was seven small bruises on my abdomen from the Fraxiparine injections after the procedure. I might be kind of weird, but I enjoyed injecting the blood thinner (I'm not a junky, and have only ever given myself Vit. B12 injections before)

Good luck with after-care. If you find someone in this broad, compassionate country, let me know.

Best of luck!
My name is not really Johnson. MSed up since 1993
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Re: Post-Treat questions

Postby dania » Mon Aug 23, 2010 7:46 am

Saskatoongal wrote:I am going to Bulgaria in December. I have a couple of questions which I hope you can answer. Does anyone actually know of articles published recording follow-ups of people who actually had the procedure. All the research I have read is from people who have recently went. How are people doing say a year after the treatment. Is this a temporary treatment? Also for those who have went, what were the side effects after (fatique, headaches...) I have to come back to Canada, am wondering if I should find a place to relax before flying back. All the best!!

This is such a new procedure that has only been available for about the last 4 months. If you look on this site they are many stories emerging with post procedure problems, such as restenosis, low blood pressure, and blood clots. Some people report that they got worse after the procedure.
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RE: Post-treatment

Postby Saskatoongal » Mon Aug 23, 2010 10:51 am

Thanks for the information. I will look into your video on youtube Mark. I am just trying to get as much info as I can before I go. At the moment I am booked for Bulgaria, maybe it is better to just cross the border. Another option would be to hope that Canada gets there sh** together and do the treatment here. I am one of the lucky ones that although I was diagnosed 12 years ago my MS has not progressed that far, mostly suffer from balance and mobility issues. My head is spinning- thoughts of what to do.
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