For those with valve probs....what did you do?

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

For those with valve probs....what did you do?

Postby Wonderfulworld » Sun May 02, 2010 3:44 am

I did see quite a few of TIMS'ers mentioned in the Dr. Sclafani thread who had valve issues.
My question - what have you done if you had valve issues? - waiting for more research or gone for liberation?

What kind of valve issues did you have?
Have your doctors mentioned anything about fixing the valves?
What type of MS do you have?

I got my results for Doppler scan this week, and it shows I have limited flow on left jugular vein, with incomplete collapse of the valve when sitting, and not opening fully either when lying down. Increased flow in right jugular vein.

Sorry for all the questions, I hope to see my GP this week with the Doppler results and start my own CCSVI journey from here so knowing what the situation is, and what you may have done, would be very very helpful. Many thanks in advance and if you'd prefer to send me a private message, that's fine too.
Concussus Resurgo
RR-MS dx 1998 and Coeliac dx 2003
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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Postby ErikaSlovakia » Sun May 02, 2010 4:17 am

Hi Wonderfulworld!
I had pathological valve described by Dr. Simka in August 2009.
He consulted my case with more doctors of course. I have also been in contact with Dr. Schelling from Austria and prof. Leonardo Corcos from Italy.
Dr. Simka was thinking about open surgery in my case as well.
I got one stent in my left jugular vein.
I will be 6 months after the procedure in Poland tomorrow.
My MS is RRMS. I did not want to wait for anything anymore and I am not sorry at all. I am aware I am only the second with MS in Poland but I am also aware that more people in the world got a stent in their jugulars years before me.
I do not have any complications because of my stent.
I will write a report tomorrow but I am not worse for sure than before the procedure and I have not had any attack for sure.

So far so good. I am not healthy I still feel my MS but I have some improvements.

Erika :)
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Posts: 1125
Joined: Wed Jul 29, 2009 3:00 pm
Location: Slovakia, Europe

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