I have had MS for 24 years. Did very well for 18 of them. But have progressed downhill rapidly for the last 3 years. Now in a wheelchair, left side leg paralyzed. About 2 years ago I developed CVI, in my left side. Leg and foot very swollen and I could not put a shoe on. Also my foot was dark purple/red. When I was treated with angioplasty for CCSVI, my CVI disappeared 5 hours after treatment. The swelling was 100% gone and the purple/red foot was now a normal colour. I restenosed and I knew it because the swelling returned and my foot again became purple/red. I had a second procedure and again the swelling and colour became normal a few hours after the procedure. Again I restenosed and I have to this day swelling in my leg and the purple/red foot.
I think CVI only presents itself in patients with MS when the disease/condition has progressed to a certain point. I have seen many MS patients, and it is usually the ones that are very disabled, with swollen legs and feet and the purple/red colouring.
Because of my personal experience that is why I think CVI and CCSVI are somehow connected.
- Family Elder
- Posts: 5359
- Joined: Mon Sep 10, 2007 2:00 pm
- Location: southern California
- Been thanked: 1 time
Perhaps, the blood thinning/anticoagulant and IV fluids which are administered during venoplasty helped mobilize blood throughout your body, or counter-acted hypovolemia. The anti coagulant you were on after your procedure would help this, as well. This would relieve edema in your lower limbs.
Or maybe, the opening of central venous stenosis affects the lower limbs.
The truth is, we do not know. Dr. Zamboni's study looked at the ramifications of central venous stenosis in the central nervous system. We need more placebo controlled clinical trials, so that the doctors can understand the mechanism of action. But we do know that CVI and CCSVI share many of the same outcomes, due to inflammation. That was Dr. Zamboni's first "Big Idea" that started his studies.
The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis
One thing we do know, is that gravity has a different affect on CVI in the lower limbs, which is why patients are told to wear compression stockings, take vasoconstrictive medications and elevate their legs. The lower limbs need tighter veins to return blood to the heart.
dx dual jugular vein stenosis (CCSVI) 4/09
Like you said Cheer, maybe, the opening of central venous stenosis affects the lower limbs. I believe that it does. I sincerely hope others will post, if they experienced their swelling and foot colouring returning to normal after angioplasty.
Post subject: Re: DR TREVOR TUCKER PHD
Unread postPosted: Sun Sep 18, 2011 2:15 am
Joined: Mon Nov 23, 2009 9:00 am
Location: Didsbury, Alberta Canada
The fluid dynamics in my body since CCSVI procedure are a mystery to me! Much less swelling in my ankles/feet, perspiration - so i'm able to tolerate heat, obviously better blood circulation - warmth in my extremities. Lovin' it all!
Bjørn Eirik Westby
I have had the exact same experience - CCSVI procedure in my ijv, feet were perfect, but only for a few days. Then deterioration with swollen and "heavy" feet, and very clear stiffness in both legs. I am on the virtue of having a surgeon to make the diagnose, but it seems very related to CVI... The interesting thing for me is the question if the can replace veins surgically, or open valves to function properly again. I do believe we are on a path to get solid help, as I have experienced great improvements in legs and in walking immediately after angioplasty in neck-veins...
6 hours ago
A year and a half ago, but note response from Dr S to last question
- Similar Topics
- Last post