Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby CureOrBust » Mon Feb 16, 2009 9:17 pm

I though I might just let you know what the tests actually involved.

They all seemed simple enough. The smooth metal "listener" (ie transducer) was lubricated and placed gently against my neck. She moved it around a fair bit for the different tests; ie to the front of my neck, the back, towards under my jaw on the right hand side, and then all again on the left. She also placed a smaller transducer on a spot just in front and above my ear, ie a little behind my temple and above my jaw bone I guess. I think I also noticed she used different frequencies along the way. All in all I think the tests took less than an hour, and were performed on both sides, and in the supine (laying down) and seated position, and she also got me to breath out, and hold my breath.

Very non-invasive.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Advertisement

Postby cheerleader » Mon Feb 16, 2009 9:34 pm

Cure...
Your neuro may not understand how venous reflux can lead to MS damage...but researchers are seeing how this might happen with 7Tesla MRI. Please look at the pics, print it out to discuss with your neuro. Jugular valve insufficiency is related to neurological disease, and would explain this type of vascular inflammation.

http://www.med.nyu.edu/radiology_resear ... /02129.pdf

7T MRI: A Powerful Vision of Microvascular Abnormalities in Multiple Sclerosis

Y. Ge1, V. Zohrabian1, and R. I. Grossman1
1 Department of Radiology, New York University School of Medicine, New York City, NY, United States

Introduction: Multiple sclerosis (MS) lesions have been linked to venous abnormality, although the derivation of these lesions from the vasculature has been difficult to assess in vivo (1,2). Ultra-high-field (e.g. 7T) MR has provided increased visibility of venous vasculature by taking advantage of markedly increased intrinsic intensity and susceptibility contrast (3). We report findings acquired at 7T MR in two MS patients, and demonstrate enhanced detection of unique microvascular abnormalities in MS.
Our findings established that approximately half of total MS lesions in our two patients are small with well-defined central veins, and that these diffuse, subtle signal abnormalities may correspond to early vascular changes. This represents the first time that such subtle vascular inflammatory abnormalities have been demonstrated in vivo. Improved detection of these lesions in the early stage of development on 7T MRI will
have substantial ramifications on future diagnosis, monitoring, and therapeutic response in MS.


You've got something which is tied to neurological disease (IJVVI-internal jugular vein valve incompetence), and you have MS. I'm counting on you to help put these pieces together! Thanks again for getting tested first.
AC

PS I've posted this before, but maybe it got lost in the discussion. Might mean more to you now you know you got it...
http://health.elsevier.com/ajws_archive ... 3A4703.pdf
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5074
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby CureOrBust » Tue Feb 17, 2009 4:45 am

cheerleader wrote:Might mean more to you now you know you got it...
http://health.elsevier.com/ajws_archive ... 3A4703.pdf

Thanks, I have quickly read the first one and need to understand it a little better. On first glance it appears promising, but at a very early stage.

The second one does not appear to really join any real dots for me, and MS. Its mostly about describing the venous system and its workings, and only makes references to other articles for the problems that it may caused. With the majority of references being for Transient Global Amnesia, not plaques.

One particular passage that caught my eye in the second article was:
In several studies, IJVVI was found in 20–40% of normal individuals, depending on the imaging method and the study population [44,53,55]. In a study with a large sample of healthy individuals (n = 121), IJVVI was found more frequently in older subjects and in men [55].

Am I reading it right? Its saying to me that a reflux in the IJV is not that uncommon? Zamboni identified none in his controls. :?
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby CureOrBust » Tue Feb 17, 2009 5:10 am

ok, I found the answer to my own question :oops:

The above reference study used the "Valsalva maneuver" (http://en.wikipedia.org/wiki/Valsalva_maneuver) while Zamboni explicitly avoided this technique, and "assessed during a short period of apnea following a normal exhalation". This was how it was measured on me.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby cheerleader » Tue Feb 17, 2009 7:22 am

CureOrBust wrote:ok, I found the answer to my own question :oops:

The above reference study used the "Valsalva maneuver" (http://en.wikipedia.org/wiki/Valsalva_maneuver) while Zamboni explicitly avoided this technique, and "assessed during a short period of apnea following a normal exhalation". This was how it was measured on me.


Hey Cure..
You're right. Just wanted you to have this stuff for your neuro. The valsalva maneuvers (who named them?) which can increase jugular reflux temporarily are coughing, straining, sex, heavy lifting...and this does happen in the healthy population and repetition is thought to maybe wear out the jugular valve in a percentage of older men. But you're a strapping young man (right?), and you have reflux just sitting on a dr's table, breathing. Not so normal.

It's going to be tough to get neuros to take this as seriously as we would like. I just wanted to arm you with more questions and answers for your very important neuro.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5074
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby cheerleader » Tue Feb 17, 2009 9:23 am

Another doctor researching the correlation of venous outflow and MS-
Website of Dr. Marian Simka
Department of Angiology, Wodzislawska 78, 43-200 Pszczyna, Poland

http://strona.simka.nazwa.pl/multiple-sclerosis.html

Gainsbourg has mentioned Dr. Simka's research on iron in this thread-
http://www.thisisms.com/ftopict-6606.html

Here's Dr. Simka's research and med hypothesis on iron overload in MS
http://www.ncbi.nlm.nih.gov/pubmed/18400414
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5074
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby CureOrBust » Tue Feb 17, 2009 3:53 pm

cheerleader wrote:Another doctor researching the correlation of venous outflow and MS-
Website of Dr. Marian Simka
Department of Angiology, Wodzislawska 78, 43-200 Pszczyna, Poland
http://strona.simka.nazwa.pl/multiple-sclerosis.html
I read her web site and thought it would be enhanced greatly if she (I hope I got that right) had included references for her assertions/assumptions. So I did a search on her statements, and found the following, which is her comments on Zamboni's article. This link has been posted somewhere here previously, but somehow reading it now was a little more interesting.

http://jnnp.bmj.com/cgi/eletters/jnnp.2008.157164v1
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby gainsbourg » Wed Feb 18, 2009 8:46 am

Yes, I mentioned Dr. Simka on the iron chelation thread because he wrote to me expressing an interest in this area. He also drew my attention to Zamboni's interest in the role of iron and chelation.

He is an angiology/vascular specialist and also a phlebologist, i.e. a doctor who removes iron (amongst other things) from the body by means of blood letting.

He explores the possibility that MS is a 'hemodynamic disorder' in some detail but also asks:

Is (intracranial reflux) indeed the trigger of multiple sclerosis plaques, and not an innocent bystander?




gains
Last edited by gainsbourg on Sat Feb 21, 2009 3:32 pm, edited 2 times in total.
User avatar
gainsbourg
Family Elder
 
Posts: 218
Joined: Sat Sep 06, 2008 2:00 pm
Location: London

Postby Waterbear » Wed Feb 18, 2009 1:26 pm

Does someone know which are the symptoms that an otherwise healthy individual would have from the vascular anomalies Zamboni identified in his MS patients? Do they include headaches? Sorry if this has been mentioned before, i've read most bits of this thread but can't remember seeing it somewhere.

Also, wouldn't it be a good idea to get a separate place in the forum (a 'vascular' section) for this discussion? The discussion attracts a lost of interest (12,000 or so views) but the thread is massive and difficult to follow through.

Thanks
Waterbear
Family Member
 
Posts: 40
Joined: Thu Aug 21, 2008 2:00 pm
Location: London,UK

Postby cheerleader » Wed Feb 18, 2009 2:20 pm

Hi Waterbear...
A healthy individual with venous reflux might have transient global amnesia, heart disease, or headaches. Search JVVI (jugular valve venous insufficiency) for more info. Zamboni claims that only MS patients have 2 or greater than 2 markers of venous insufficiency, which he specifies in his research.

This thread is really more specific than "vascular", since it is discussing a scientific observation...that of cerebrospinal venous insufficiency in MS. Sorry it's gotten so ungainly, but I still think it's worth it for folks to slog thru, read the research and make up their own minds.
AC

PS...I think Dr. Simka is a he....Marian is masculine in Polish.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5074
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby DIM » Thu Feb 19, 2009 12:18 am

By the way what bed changes - if any - should be done in case of spinal cord lessions, incline bed or what?
My wife when diagnosed has had many cerebral lessions but all the related problems have completely dissapeared, what remains even faid with colds or first days of her period is spinal related and wonder what could I do to eliminate it.
I understand spinal cord plasticity is quite reduced compared with brain but I am believer that body can shelf repair in areas we believe is impossible say spinal cord.
User avatar
DIM
Family Elder
 
Posts: 384
Joined: Thu Feb 28, 2008 3:00 pm
Location: GREECE

Postby cheerleader » Thu Feb 19, 2009 7:26 am

DIM wrote:By the way what bed changes - if any - should be done in case of spinal cord lessions, incline bed or what?


Andrew Fletcher, the creator of IBT, would say it's the same for all MS lesions, the head of the bed should be raised about 5 inches, to improve the entire circulatory system. It's easy to try. We have old hardcover books under the front posts of our bed. We haven't seen a huge change, but it's been a very stressful time for Jeff.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5074
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby DIM » Thu Feb 19, 2009 10:03 am

cheerleader wrote:
DIM wrote:By the way what bed changes - if any - should be done in case of spinal cord lessions, incline bed or what?


Andrew Fletcher, the creator of IBT, would say it's the same for all MS lesions, the head of the bed should be raised about 5 inches, to improve the entire circulatory system. It's easy to try. We have old hardcover books under the front posts of our bed. We haven't seen a huge change, but it's been a very stressful time for Jeff.
AC

Thanks Cheer how is Jeff, is he doing well or at least better than the first days?
User avatar
DIM
Family Elder
 
Posts: 384
Joined: Thu Feb 28, 2008 3:00 pm
Location: GREECE

Postby AndrewKFletcher » Thu Feb 19, 2009 12:20 pm

6 inch incline at head end of the bed on a 6 feet 3 inch long bed. If yours is longer then another inch raise might be in order.

You might not think the angle is crucial but it has been tested over many years.

Andrew
User avatar
AndrewKFletcher
Family Elder
 
Posts: 773
Joined: Wed Jan 14, 2009 3:00 pm
Location: Paignton, Devon, UK

Postby CureOrBust » Tue Feb 24, 2009 3:33 pm

Andrew, I am surprised, you did not post Zamboni's presentation here (like you posted in the other thread). :? I mean, this thread could be subtitled "The Zamboni Thread"

http://bibamed.agcl.com/cx_2007/Tue%201145%20Zamboni.pdf
This looks like what he is presenting at the conference in Charing Cross next month.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service