I WAS ASKED THIS QUESTION...

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

I WAS ASKED THIS QUESTION...

Postby dania » Tue Sep 13, 2011 11:19 am

How are CVI and CCSVI the same or related condition ???

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.
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Re: I WAS ASKED THIS QUESTION...

Postby civickiller » Tue Sep 13, 2011 11:56 am

tested for May-Turners?
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Re: I WAS ASKED THIS QUESTION...

Postby dania » Tue Sep 13, 2011 12:04 pm

I do not have May-Turners.
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Re: I WAS ASKED THIS QUESTION...

Postby cheerleader » Tue Sep 13, 2011 12:23 pm

There could be many factors involved in your case, dania, that may not have anything to do with CCSVI.
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
http://jrsm.rsmjournals.com/content/99/11/589.full

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.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: I WAS ASKED THIS QUESTION...

Postby dania » Tue Sep 13, 2011 1:04 pm

I have been on Coumadin 10 mg for over 10 years. INR is a constant 2.7. So I guess we can scratch that off the list. I have seen many other posting that the swelling and the colouring return to normal after angioplasty. I am not the only one who has experienced this. It is just very odd that both times my veins were angioplastied the swelling and the pooling of blood (purple/red) in the feet disappeared within hours. And stayed that way until I restenosed about 10 days later. Anything that was administered during the procedure did not have that long of a half life.
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.
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Re: I WAS ASKED THIS QUESTION...

Postby dania » Sat Sep 17, 2011 9:32 am

Here is another person whose swelling in ankles/feet decrease after angioplasty.

dlb
Post subject: Re: DR TREVOR TUCKER PHD
Unread postPosted: Sun Sep 18, 2011 2:15 am
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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!
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Re: I WAS ASKED THIS QUESTION...

Postby dania » Tue Sep 20, 2011 9:40 am

Here is another person whose CVI disappeared after angioplasty.

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
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Re: I WAS ASKED THIS QUESTION...

Postby Brainteaser » Wed Sep 21, 2011 3:20 am

post105219.html#p105219

A year and a half ago, but note response from Dr S to last question
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