Sticky: CCSVI Patient Tesimonials

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

Sticky: CCSVI Patient Tesimonials

Postby KelsEBrown » Thu Jun 23, 2011 9:50 am

Hi Everyone,

My name is Kelsey, I'm 25yrs old and am here on behalf of my mother Arlene, 56, who has been suffering from very advanced PPMS for the last 30yrs. She now only retains minimal functioning of her right arm. Upon a recent trip to Barrie, Ontario she had the doppler scan done and was surprised to learn that 3 out of 5 veins are significantly narrowed. The doctor that she saw there gave her a list of treatment centers in North America that are currently doing the CCSVI procedure, but she has asked me to reach out to patients who may have already had it done to find out how life has been for them since (relapses, pain, benefits, etc). Maybe it is unlikely that I will find anyone who was as advanced as she is now, when they did the procedure, but I don't care. I want to know everything first hand and am really hoping that this is the place to find the information that I am looking for. My mother is a prisoner of her own body and mind, and this may very well be her one and only chance at fighting this horribly cruel disease and I need her to do it, but I need your help first, so any information would be greatly appreciated.

Thank you!

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Postby Cece » Thu Jun 23, 2011 10:48 am

Here's one that came to mind from last December (Christmas miracle):

My own CCSVI experience has been very positive. I still have MS ups-and-downs but I no longer have the desperate very-ill-feeling fatigue. I also have vision improvements, minimal residual foot drop disappeared for the first time in 5+ years, cogfog improvements, appetite, posture and core strength, and hearing/tinnitus. Numbness in my arm improved but returned but is gone again.

I hope this is helpful to your mom. One thing, the "3 out of 5" was probably referring to 3 out of 5 of the Zamboni criteria, which is a way of measuring the effects of the blockages on the blood flow/hemodynamics. There are three main veins involved in CCSVI: the left jugular, right jugular and the azygous. There are also the iliac and the renal veins that, if blocked, can complicate the azygous drainage. But the "3 out of 5" Zamboni criteria does not tell you how many veins are blocked, only there is some blockage interfering with the blood flow.
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