What if you presented with CCSVI without an MS diagnosis?

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

What if you presented with CCSVI without an MS diagnosis?

Postby rssugg » Tue May 11, 2010 11:30 am

1. Is this possible

2. If so, have they treated it using angio/stents?
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Re: What if you presented with CCSVI without an MS diagnosis

Postby cheerleader » Tue May 11, 2010 11:53 am

rssugg wrote:1. Is this possible

2. If so, have they treated it using angio/stents?


Yes, it has happened. Sharon's daughter was tested at Stanford, and found to have CCSVI. She had an MRI which showed lesions. She had been having neurological issues, but had not been tested nor received an MS diagnosis. She is now almost a year out from having angioplasty and stents to relieve her jugular stenosis. I hope Sharon chimes in here-

Another young woman was in the healthy controls group at BNAC, and she had CCSVI. She later was given an MRI, showed lesions and ended up with an MS diagnosis. Dr. Zivadinov spoke of her case in Bologna last September. I do not know if she has been treated for her venous occlusion.

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby rssugg » Tue May 11, 2010 5:07 pm

thanks - my point was to get a sense if doctors were doing angioplasty on the jugualr veins before MS/CCSVI. If they are, no use in telling them that I have MS, but I have malformed veins, or something else that would get the docs to do an angio on the jugular.
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Postby cheerleader » Tue May 11, 2010 5:45 pm

rssugg wrote:thanks - my point was to get a sense if doctors were doing angioplasty on the jugualr veins before MS/CCSVI. If they are, no use in telling them that I have MS, but I have malformed veins, or something else that would get the docs to do an angio on the jugular.


OK, that's different...the short answer is no, it is not a usual procedure. Although it is done for dialysis patients who have stenotic jugulars, it's not an everyday thing. The indications for jugular stenosis would be headache, edema (swelling) pulsatile tinnitus, and fatigue.
good luck!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby rssugg » Wed May 12, 2010 2:59 am

headache, edema (swelling) pulsatile tinnitus, and fatigue. ......



hmmmm, i have all these things
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