This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi everyone, I’m very happy that I can finally write about his CCSVI procedure. He did it 2 days ago. Unfortunately we don’t have yet the details of the procedure so I am writing a new post, instead of writing at “CCSVI tracking project-POST PER P.1 FORMAT ONLY”, with everything that was told to us orally.
They found 50% stenosis at his left IJV which he didn’t ballooned because he didn’t think it was necessary (when he asked him why he said that he did work on it and tried to open it with pressure, I’ll know more about that when we get the writing results). The azygos vein was blocked by a big membrane, which were trying to break for about 1 hour. At this point I must mention that his severe problems involve balance and walking stability, bladder urgency, fatigue, reduced heat tolerance. After the procedure he felt some sort of electricity running through his spine and we also saw purple feet.
But there are some things that we don’t cheer about yet but make us exchange little conspiring smiles. His walking is so much better already, I can see him walk stable and yesterday he walked down 2 stairs holding a bag without losing his balance and without holding. So I just look at him with a little smile in my face and he is like “Yes I know I think I’m better too” .
He will probably at some point repeat the procedure and search further his CCSVI when the medical community is ready. It’s like we put out the fire in one tree let us see now the forest. We both find difficult to believe that his spinal problems have nothing to do with the fact that the vein running his spine was almost totally blocked. I feel like I want to yell and say to all vascular doctor’s give interest so you can get it to a point of making it a routine procedure. I want to yell to some neuro’s also but for other reasons, mostly because some are so narrow minded. Anyway I made a really long post. I’ll write when we get the results and I’ll keep you posted for any new smiles…

Lydia,

Thank you for sharing your husband's CCSVI story with us. I smiled at your mention of "make us exchange little conspiring smiles." I hope you and he are able to exchange many more such little smiles and that they become big smiles one day soon.

Looking forward to you telling us about more of those special smiles.

I am so happy to read your story of your journey! Yaaaaaaaaay! I hope too that there are many more subtle smiles and knowing looks as the days and months go by.

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Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!

Thank you for sharing. Wonderful!

That is the weird part of the CCSVI procedure. You notice change a little at a time, or you notice a symptom you had is gone when you wake up one morning.

Change can be very subtle or so slow in happening, that you never realized it changed until it is gone or feels so much better.