This Is MS Multiple Sclerosis Community: Knowledge & Support

I had my CCSVI procedure on Jul 9/10. Over the course of the next 2 months, I had the following improvements:

1.) My foot was no longer purple.
2.) I could wiggle my toes.
3.) I had feeling in my feet.
4.) I could tandem walk up to 19 steps at a time (that was my record).
5.) I was no longer dizzy went I bent down and then stood back up.
6.) I slept thru the night.
7.) I actually dreamed.
8.) My sense of smell improved.
9.) My daily headaches disappeared.

Last week, the headaches returned. My right foot turned purple. When I bent down and then stood up, I felt dizzy and almost like blacking out. I woke up every couple of hours each night. I could no longer even do even one tandem step. I dont believe I dreamed all week.

I was pretty certain I had restenosed.

Now starting on Friday, the headaches stopped. My foot is pink again. I can tandem walk up to 7 steps. I have slept thru the night twice in a row and remember dreaming last night. I do not feel dizzy when I stand up after bending down.

Am I just jumping the gun or could I have temporarily restenosed and then improved?

Would love to hear any opinion.

Ali

Someone recently posted a story about having improvement then losing it only to get it back suddenly one day when they were straining doing some gardening I think it was. His theory was that he somehow inadvertently re-liberated his re-stenosis, I think. Sorry I can't remember more details or who it was.

It's strange but I agree, it seems like a temporary worsening or restenosis and then an improvement again.

This also reminds me of CaptBoo with his cigarettes, making himself think he'd restenosed until he finished off all of them and then felt better the next day.

During the week things were off, were you doing anything different or oxygen-depriving or had a cold or something like that? I know this could be a stretch! I hope the improvements are back for good.

That was skincoll. You can search his name to find the post. It was about 3 weeks ago.

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My name is not really Johnson. MSed up since 1993

I've been wondering if CCSVI is always a continuous condition. In certain cases like inverted valves or agenesis it probably is. But in cases where the vein is simply constricted is it possible that the degree of constriction changes? Could the surrounding muscles compress the vein at some times and not at others? I don't know, but if it does maybe we should call that condition Relapsing Remitting CerebroSpinal Veinous Insufficiency RRCSVI. Just thinking out loud I guess.

I've wondered the same thing. I had 12 years between flare up number 1 and 2. then I had 16 years between number 2 and number 3. I have wondered why all those years I didn't have problems if I had the abnormalities all along. (I had the procedure done in Bulgaria)
Another strange thing, with my second flare up I had right ear pulsatile tinnitus and this time it is in the left ear, which if I understand correctly is due to pressure or compression on the opposite side of the neck.
So I wonder, if my veins opened and closed on their own over the years.
By doppler testing, it shows that I have re-stenosed.

Interesting to hear that perhaps I'm not alone.

I slept soundly last night and can tandem walk 10 steps!

I think I'll stop questionning how this is all possible and just enjoy!

Thanks for the info!

I believe there are many variables that impact how we ms'ers feel from day to day. It is not just how open those veins stay. Like one doctor wrote a while back (Dr. Simka??).. MS = CCSVI + something else. As one who had my stenosis ballooned with no apparent impact, clearly some other things are at play here. Just my opinion.