CCSVI skeptics

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
IHateMS
Family Elder
Posts: 168
Joined: Sun May 17, 2009 2:00 pm
Contact:

Post by IHateMS »

Is this the same idea as CCSVI? This whole subject is intriguing. I am still at an early place on the learning curve. I apologize if this is a repeat or if this is the wrong place. I am curious because I have ZERO brain lesions after 10+ years and 'only' two C-spine lesions.

http://www.medical-hypotheses.com/artic ... 0615-9/pdf

Received 22 September 2007; accepted 6 October 2007. published online 13 December 2007.

Summary
It is hypothesised that the inflammatory condition seen in MS and the progressive myelopathy that is being successfully halted by obliteration of dural arteriovenous fistulas (DAVFs), may actually be two sides of the same coin. Excessive venous hypertension can stretch vein walls sufficiently to separate the tight junctions between endothelial cells forming the blood-brain-barrier (BBB). Colloids, etc., but not necessarily erythrocytes, could then pass through the exposed porous basement membranes. The resulting changes in osmotic pressure, etc. would disrupt the axon and dendrite internal transport systems, leading to their disintegration. The normal inflammatory processes which would follow, might be indistinguishable from those associated with autoimmune disease.

Ascending progressive myelopathy and disablement are associated with an intracranial DAVF when its outflow enters the spinal venous system and descends past the cervical region. This can be arrested, and some degree of recovery produced, if the DAVF can be successfully eliminated or blocked. However, if the DAVF outflow is entirely into the spine, intracranial venous pressure may be normal and so there is nothing to alert the clinician to the presence of an intracranial DAVF.

It is suggested that where spinal MS has been diagnosed from clinical observations, patients should be referred for angiological investigation to search for DAVFs within the head to identify any treatable subjects.
User avatar
notasperfectasyou
Family Elder
Posts: 802
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia
Contact:

Post by notasperfectasyou »

chrishasms wrote:Run out like ABS? What is that or what does it mean?
Yup, MS can be cured with anti-lock brakes Chris. So that's 3 treatments. You might not have known about that one.
CureOrBust wrote:Do not forget or underestimate Campath.
Cure, it's pretty much a done deal. Chris will be published very soon with his 2 cure peer reviewed Nobel prize winning paper. I hope Chris keeps this all a secret so Sarah, Mac and Rica don't find out that Chris says that they really haven't been cured of MS. We'd better keep this a secret from Kim too. Thanks. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
User avatar
cheerleader
Family Elder
Posts: 5361
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader »

BINGO! You got it, HateMS....
It is hypothesised that the inflammatory condition seen in MS and the progressive myelopathy that is being successfully halted by obliteration of dural arteriovenous fistulas (DAVFs), may actually be two sides of the same coin.

This is the research paper Marie was referring to on my "Just the Facts" thread. DAVFs are a model for venous congestive myelopathy. You do not need to have a DAVF to get this scenario. If you have a narrowed or blocked jugular or azygos vein, the same thing will happen. CCSVI is created by a blocked vein, but the result is the same...endothelial damage, reflux of blood, leaky veins and demyelination in the brain and spine. And if you fix it....myelopathy STOPS!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
patientx
Family Elder
Posts: 1072
Joined: Wed Sep 10, 2008 2:00 pm

Post by patientx »

CureOrBust wrote:
chrishasms wrote:There are only two treatments out there right now that are guaranteed, not by doctors but by the people who have done it, to get you something back. These are the only wo things really being discussed anymore on TIMS because we are a very proactive group.

Revimmune and CCVI treatment.
Do not forget or underestimate Campath.
I'm glad you posted this; I was thinking about writing something similar.

I get the impression that most of the Campath recipients are busy getting on with their lives.
chrishasms
Family Elder
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm
Contact:

Post by chrishasms »

123
Last edited by chrishasms on Sat Dec 05, 2009 12:42 pm, edited 1 time in total.
chrishasms
Family Elder
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm
Contact:

Post by chrishasms »

123
Last edited by chrishasms on Sat Dec 05, 2009 12:42 pm, edited 1 time in total.
User avatar
notasperfectasyou
Family Elder
Posts: 802
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia
Contact:

Post by notasperfectasyou »

chrishasms wrote:ABX, what does that mean? Sorry I hit the button right below the X...no need to be an ass about it.
Apparently it's not relevant to know since
There are only two treatments out there right now that are guaranteed
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
chrishasms
Family Elder
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm
Contact:

Post by chrishasms »

123
Last edited by chrishasms on Sat Dec 05, 2009 12:42 pm, edited 1 time in total.
User avatar
cheerleader
Family Elder
Posts: 5361
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader »

Yo...take it outside!
It doesn't matter who thinks what. We're all on the same team. We hate MS, what it does to ourselves and our loved ones, and we're looking for some help. Any more skeptics on CCSVI? Any more questions on this theory?
cheer/ref
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
notasperfectasyou
Family Elder
Posts: 802
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia
Contact:

Post by notasperfectasyou »

chrishasms wrote:You know what?
I know that I don't know anything about Revimmune, so I wouldn't make inflammatory remarks that discount it's benefit to others here who use it. That's my entire point.
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
chrishasms
Family Elder
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm
Contact:

Post by chrishasms »

123
Last edited by chrishasms on Sat Dec 05, 2009 12:43 pm, edited 1 time in total.
User avatar
scorpion
Family Elder
Posts: 1323
Joined: Wed Nov 05, 2008 3:00 pm

Post by scorpion »

Hey Cheer,

I am still a skeptic but fully prepared to throw a huge party for everyone at thisisms is this theory pans out!!! Chris and notasperfectasyou, I hope if I do throw th e party I will not have to keep you guys seperated. Actually my guess is that if CCSVI is the answer we have been waiting for you guys will be doing the happy dance together!! I was wondering if this treatment is being tried on people with PPMS. I think before any of us start talking about a cure we need to remind ourselves that we have many brothers and sisters out there with PPMS pr SPMS that still have very few answers.
User avatar
peekaboo
Family Elder
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona
Contact:

Post by peekaboo »

Scorp - I have PPMS and Marie has SPMS :)
robbie
Family Elder
Posts: 1300
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Post by robbie »

I think before any of us start talking about a cure we need to remind ourselves that we have many brothers and sisters out there with PPMS pr SPMS that still have very few answers.
Scorpion thank you for saying that
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
User avatar
notasperfectasyou
Family Elder
Posts: 802
Joined: Thu Feb 09, 2006 3:00 pm
Location: Northern Virginia
Contact:

Post by notasperfectasyou »

I would be happy to do the Happy Dance with Chris. So in an effort to get us closer to a Cure Party, I'm going to take some stuff to Sriram next month. Marie has recommended Zamboni 12/08 and the Big Idea. I think soemtimes you need to see the same thing a second time from a different person, I'm thinking it might be helpful if I bring him some info about this. What else should I we give him? Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”