Last reply 5 years ago
tysabri and ccsvi

I’m about to start tysabri in march but also considering ccsvi. Can you do both simultaneously? Anyone got any advice or experience?

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stumbler
5 years ago

Well, one is a medication and the other is a physical surgical procedure, so you could consider there should be no interaction.
But, how would you know which was giving you any benefit?
Would it be wise to start on the Tysabri for a few months to see how it goes. Then you would have a benchmark if you wanted to make a sizeable investment in CCSVI.
CCSVI does not work for everybody.
Hope this helps.


tiltawhirl
5 years ago

Copy/Paste from my earlier post

Hi all! 🙂 SPMS Dx’d in 2011, but symptomatic for almost 2 decades, looking back on my history. Past 6 years walked with a cane and used a chair for long distances. Extreme fatigue, foot drop, pins and needles in both feet and hands, extreme depression, bouts of incontinence, heat intolerance, balance and co-ordination problems, brain fog, trouble with my swallowing reflex, and lesions on the brain in multiple MRIs seperated by time and space meeting the McDonald criteria for Dx of MS. No spinal lesions. I had never taken any disease modifying drugs, and had been following the progress of the whole CCSVI treatment over the past few years. Since I was getting worse and there was no other options, I decided to give the procedure a shot. I went in as an atheist and skeptical of a positive outcome. Boy was I shocked when I started to feel my legs normally again ON THE TABLE! Let me be clear that I am aware that my results are not typical, and certainly on the best outcome end of the spectrum. It is 3 months post treatment and all of my improvements are holding. The only symptom that hasn’t changed is trouble with swallowing occasionally. But otherwise I couldn’t be happier with my outcome. Proof is in the pudding, and I can verify 100% that my results are not some sort of placebo effect. If you have any questions please let me know. All the best to everyone. 🙂

http://www.youtube.com/watch?v=kiOteGvgoBI

http://www.youtube.com/watch?v=gnfu9O1xL1s

tilt


edgarleroy
5 years ago

The CCSVI theory doesn’t make sense to me. The trial results are all over the place (see here for a round-up from last October’s ECTRIMS conference http://multiple-sclerosis-research.blogspot.com/2012/10/ccsvi-not-compelling-evidence-for.html) The procedure seems dangerous and expensive. There is anecdotal evidence that it works. I think that anyone is welcome to try it, but it’s not for me. Go in with your eyes open.


msnursemiranda
5 years ago

I’ve got a patient with that dilemma – she was offered tysabri but wanted to do CCSVI first. They tore a strip off her in the hospital although I supported her. She went ahead and I saw her briefly since – she doesn’t regret it, has much more energy and lost the ‘brain-fog’ and is going ahead with Tysabri really soon. Good luck!

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