Myelopathy associated with bilateral jugular vein occlusion!

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

Postby Jamie » Wed Aug 05, 2009 4:25 pm

beyond reasonable doubt.
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Postby mormiles » Thu Aug 06, 2009 8:34 am

Marie (and/or any other medically informed person or dabblers), I've been googling to find a connection between Steve's hepatic lesions that are thought to be hemangiomas and CCSVI. Incidentally, he also has benign cysts in other abdominal organs (spleen, pancreas, kidneys). Also, he was born jaundiced.

Information on the causes of hepatic hemangiomas is fairly thin, but some sites I've seen cite the rare implication of inferior vena cava stenosis, and those implications mostly come indirectly from sites concerning Budd-Chiari Syndrome (which, of course we don't know that Steve has---if he does, it's so mild, it's asymptomatic). Stenosis of the inferior vena cava would also connect with the varicose veins/purplish red foot symptom.

Of course, these connections have to do with the inferior vena cava, not the superior vena cava which drains the jugulars and azygos veins, so perhaps I'm stretching into the territory of "venous squirreliness all round." Plus, there is much variation in the cardiovascular system from one individual to the next with lots of surprising anomalies. Some veins that ordinarily drain into one venous trunk might actually drain into a different venous trunk in a person with a squirrely venous system. Rare, but there.

I don't know if I'm trying to extrapolate too far or to contrive a connection that's too weak. Any enlightenment would be appreciated. My intention is not to hijack this thread, it's just that the posted articles have sparked my imagination.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby cheerleader » Thu Aug 06, 2009 10:16 am

Hey Joyce...
Marie's on the road, and I'm just a spouse/dabbler....but the thing that first put me on the blood trail was Jeff's blood panel results at diagnosis. He presented with his first flare with high SED numbers, jaundice, petechiae and sky high liver enzymes. I started looking into the connection of the liver and MS-

Here's a study of a gal with MS who have had liver transplant and stayed in remission...

I have no idea how all of this fits into the CCSVI paradigm, and how Steve's liver/venous issues may relate- except I think that coagulation cascade issues compound the stenosis found in the veins. This might be part of the scenario for him, and why his MS has been so rough. BTW, Dr. Dake looked around for other venous abnormalities (azygos, hepatic), but only found stenosis in Jeff's jugulars. Jeff's blood numbers have been fine since that first flare.

I think "venous squirreliness" is one for the book.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby mormiles » Thu Aug 06, 2009 12:20 pm

Hey cheer, Thanks very much for your informative response. I've done some studying on the urea cycle myself and particularly on ammonia toxicity in the brain as well as the liver. I followed a trail that finally brought me to flimsy myelin formation, and the dangling culprit at the end of the line was a dearth of fumarate owing to a broken cycle. I'll look for my notes and PM you.

Hmmm, it will be interesting to see if it can all be connected back to venous insufficiency in a solid and understandable way.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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