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


Postby laura383 » Thu Jul 22, 2010 8:10 pm

I had the procedure done 5 July. The first week was great, much improvement. But the last week and a half I've been feeling like I must have re-stenosed or there was another vein we still needed to dilate or something. Many of the benefits I had directly after the procedure had gone--my balance was bad, huge limp, hard to walk, legs and arm very weak. It's only been 2 1/2 weeks since my procedure and I was really disappointed.
Then tonight we watched a movie, and at the end it was 9 pm and I was still awake. Not only that, I could walk better! Balance was better! Hand flexible again and stronger! Leg stronger! OMG! I feel like I did after the procedure, like the first week!
I don't know why or how, but I don't care. I feel good again. I have hope again. Tomorrow will bring whatever it brings, but right now is just fine.
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Postby kirch86 » Thu Jul 22, 2010 8:13 pm

Sounds great!!! I hope and pray that you continue to see improvement!!!! Thanks for sharing your story!!
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Postby Cece » Thu Jul 22, 2010 8:25 pm

I hope your improvements continue as well!!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby blossom » Thu Jul 22, 2010 8:37 pm

so glad to hear this happening for you. positive thoughts to you on a continued healing that has permanent staying power.
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Postby SandyK » Thu Jul 22, 2010 9:50 pm

Great news Laura. Continued healing...
Diagnosed 1994, Self EDSS is 6.5
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Postby Kathyj08 » Fri Jul 23, 2010 3:47 am

That is great Laura.
I was thinking about you last night after reading your troubles in another post, wondering what could be happening and why.
And now this!
So happy for you!
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Postby CCSVIhusband » Fri Jul 23, 2010 4:16 am

Laura, can you provide more details? Which veins were ballooned/stented ... where you had it done?

I'm interested in discussing the possible "why's" symptoms may have been there pre-procedure, gone away post-procedure, come back, and then disappeared again.
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Postby Ernst » Fri Jul 23, 2010 4:43 am

Laura, your story sounds like my wife's. First incredible improvements and after 3-4 days positive effects vanished (and herpes attack same time) and it took 1,5 weeks before positive effects came back, little by little. Now its one month from procedure and wife is doing really great. Summasummarum: I have red that many feel ups and downs after procedure. Feels like MS just keeps hanging there and maybe with time will lose the battle. Now, the biggest fear is re-stenosis - just wish that it could be checked in hometown..
My wife's 3 yrs post video:

Our family:
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Postby laura383 » Fri Jul 23, 2010 7:32 am

Thanks for all the good wishes! It is the next morning and I still feel good.

MShusband: I had severe narrowings in both left and right jugulars which were ballooned. Azygous was clear. Went in on right so iliac and renal not checked. I take vitamins and supplements. Still take vites but ceased all supplements when things got wierd.

Ernst: sounds very similar to your wife's. In 12 hours I had improvement. That was the middle of the night! The next morning my husband's back went out (very worrying as we were in a foreign country and were not sure he could sit in a plane a few days later to go back) and very little sleep then long plane trip and recovering. (He did okay on the plane with ice on his back). Still retained improvement till the 12th then symptoms off and on --then just on-- for 10 days then it all backed off. Now only feel better, ready to heal the rest of the way.
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Postby nicknewf » Fri Jul 23, 2010 7:46 am

Wow Laura, what a rollercoaster. Great to read that you are again on an upswing. A great source of optimism!
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Postby magoo » Fri Jul 23, 2010 12:35 pm

Some very kind people on this board told me this after my procedure, "two steps forward, one step back, your body needs to adjust to the new bloodflow".
I'm so happy for you!
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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