A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
-
Hooch
- Family Member
- Posts: 57
- Joined: Thu Feb 18, 2010 3:00 pm
Post
by Hooch » Wed Oct 13, 2010 9:58 am
I think that we are all aware that this may not be a once off treatment but we also realise that the benefits from better bloodflow to and from the brain would be benefical to anyone. MS symptoms also improve - this treatment needs exceptance worldwide. Stop telling us how risky it is - there must be 5,000 of us now and still only the 2 serious problems.
-
ikulo
- Family Elder
- Posts: 444
- Joined: Tue Aug 04, 2009 2:00 pm
- Location: colorado
Post
by ikulo » Wed Oct 13, 2010 10:04 am
Hooch wrote:there must be 5,000 of us now and still only the 2 serious problems.
You must be joking.
-
CCSVIhusband
- Family Elder
- Posts: 475
- Joined: Sun Jun 27, 2010 2:00 pm
- Location: Pittsburgh, PA USA
-
Contact:
Post
by CCSVIhusband » Wed Oct 13, 2010 10:53 am
ikulo wrote:Hooch wrote:there must be 5,000 of us now and still only the 2 serious problems.
You must be joking.
I'm a big believer in CCSVI ... and what it does for what people called MS for far too long ...
But every time I see the number of people who have had the procedure done ... I cringe. It seems to multiply by the day - at unfathomable factors.
It was maybe 1,500 in June ... and now it's 5,000 less than 4 months later?
Get real ...
-
silverbirch
- Family Elder
- Posts: 232
- Joined: Fri Mar 05, 2010 3:00 pm
- Location: UK
-
Contact:
Post
by silverbirch » Wed Oct 13, 2010 11:19 am
Yes in a heart beat
I am expecting to have another venoplasty
I have had improvements and no increase in ms symptoms who know's maybe clear veins have kept some things at bay
I have been dx ms 16mts ago and my symptoms are very few at this stage....
-
ikulo
- Family Elder
- Posts: 444
- Joined: Tue Aug 04, 2009 2:00 pm
- Location: colorado
Post
by ikulo » Wed Oct 13, 2010 12:21 pm
CCSVIhusband wrote:ikulo wrote:Hooch wrote:there must be 5,000 of us now and still only the 2 serious problems.
You must be joking.
I'm a big believer in CCSVI ... and what it does for what people called MS for far too long ...
But every time I see the number of people who have had the procedure done ... I cringe. It seems to multiply by the day - at unfathomable factors.
It was maybe 1,500 in June ... and now it's 5,000 less than 4 months later?
Get real ...
I don't question the number of procedures done (it sounds like you got it all under control), but certainly anecdotal evidence suggests that serious problems are much higher than only 2. Just today a woman on the CCSVI facebook group described her complications. Not to mention the other people on TiMS who have experienced complications.
Keepin it real...
EDIT: The lady from facebook I mentioned earlier just posted her experiences here on TiMS.
http://www.thisisms.com/ftopict-14158.html
-
Cece
- Family Elder
- Posts: 9332
- Joined: Mon Jan 04, 2010 3:00 pm
-
Contact:
Post
by Cece » Wed Oct 13, 2010 2:11 pm
I guess it depends on the definition of serious problems. It is very good that there has not been another death due to complications of the blood thinners or another stent migration to the heart. But yes worsening disability as a result of the clotting off of these veins post-procedure is serious too. I am more worried for everyone than I was before these complications began coming to light lately.
I still plan on having the procedure done.