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 CCSVI and LBD??? 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post CCSVI and LBD???
Anyone on the forum ever hear of CCSVI? I have CCSVI….also…

It is restricted blood flow in the veins that drain the brain, and also possible blood reflux back into the brain and also valve problems that control the blood flow…

Just curious…this is big in the MS community…and some of the patients that I know with MS are having relief in some symptoms…including some with cognitive issues….

I mentioned this to Dr. Boeve while at Mayo and will continue to mention it to him….

I will probably have the procedure later on to balloon the veins….similar to an angio for arteries….

I was found to have one jugular restricted and reflux into the deep cerebal veins….

again…just curious…. ( I am well informed on this ) it most likely has no connection to LBD….but it might still help me...

Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years

Fri Apr 08, 2011 10:27 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: CCSVI and LBD???
Do you think it advisable to have more surgergical procedures? From many postings on here it seems peoples' LOs have had significant decline following surgery. What does your dr. think about this possible connection between surgery and significant cognitive/physical decline? Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Apr 09, 2011 7:45 pm

Joined: Wed Mar 02, 2011 1:04 pm
Posts: 252
Post Re: CCSVI and LBD???

I have read about the procedure and MS.....Are the narrowed arteries considered to be vasculitis and if it is could it cause vascular dementia symptoms that could complicate Lewy dementia symptoms? I would be interested in Dr. Boeve's opionion when you ask him.....My Dad with PD has vasculitis also....He also has PDD and had to have carotid surgery a few years back when one side was 99% seemed the surgery was a turning point to decline for him....I think I am going to try to avoid all procedures that could involve anesthesia unless they are sure cures :) it I have a choice.....Interesting procedure though - I read about the successes for MS in Italy....

Best wishes to all,

First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Mon Apr 11, 2011 5:15 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: CCSVI and LBD???

I'm not aware of any LBD connection. Certainly many people with a clinical diagnosis of LBD upon brain autopsy are found to have had vascular dementia rather than LBD.

I remember reading about Dr. Paolo Zamboni's research suggesting that MS is not an autoimmune condition but rather a vascular disease (CCSVI). I'm unclear if his views have been widely accepted in the MS community.


Tue Apr 12, 2011 8:55 pm
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