THE ROOT CAUSE

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
dania
Family Elder
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

THE ROOT CAUSE

Post by dania »

I came across these 2 posts.
1) I think I just uncovered a big piece of my health puzzle. I have a completely undeveloped right transverse sinus, meaning it doesn't really exist.
2) I found out via the process that I am a venal anomaly. My right IJV has a loop in it and is forked and one of the forks runs across the front of my neck adjoining to the other side! Dr. was unable to venogram or treat possible blockages because of it!! I wonder if these oddities are our root causes?

And I know of others, myself included, that because of compression of bones in the neck against the jugulars or CSF have also been given the diagnosis of MS. This is why angioplasty does not work for us. For us, CCSVI is a symptom of the root cause of our problems. I would encourage those that have had angio and not maintained their improvements to keep researching for their root cause.
User avatar
Daisy3
Family Elder
Posts: 309
Joined: Tue Feb 09, 2010 3:00 pm

Re: THE ROOT CAUSE

Post by Daisy3 »

Sorry to hear that Dania,

Can you do anything about it?
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Re: THE ROOT CAUSE

Post by Cece »

The sinus doesn't exist? Dang I know people who've had blocked sinuses and so it was able to be stented but if it's not there, it's not there.
Was your right IJV like that originally or did it become that way after failed angioplasty? It almost sounds like a collateral vein. Definitely not a normal IJV.

Yes, the bone compression is being talked about. There has been a very few people who have had styloidectomies to remove the styloid bone if it's the cause of compression. Definitely new territory.

Hope you are feeling ok these days.
User avatar
elyse_peace
Family Elder
Posts: 173
Joined: Thu Dec 31, 2009 3:00 pm
Location: Putnam, NY
Contact:

Re: THE ROOT CAUSE

Post by elyse_peace »

dania,
it is always good to have information, but, sister, this news is rough! i'm sorry it is this way for you. i hope that a way to help you can be figured out.
wishing you a solution.
elyse
User avatar
dania
Family Elder
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: THE ROOT CAUSE

Post by dania »

I put this info out there to help others. Information is power. The more the better, in my opinion.
centenarian100
Family Elder
Posts: 504
Joined: Mon Apr 15, 2013 9:51 am

Re: THE ROOT CAUSE

Post by centenarian100 »

dania wrote:I came across these 2 posts.
1) I think I just uncovered a big piece of my health puzzle. I have a completely undeveloped right transverse sinus, meaning it doesn't really exist.
I found a source that states that transverse sinus hypoplasia can be "a normal variant"

Image

source: http://www.neuroradiologycases.com/2011 ... sinus.html

Interestingly, it is apparently more common to have this on the left side.
My right IJV has a loop in it and is forked and one of the forks runs across the front of my neck adjoining to the other side!
Interesting. I found a case series of 200 patients describing internal jugular vein anomalies, and not one was as you describe.

source: http://www.ncbi.nlm.nih.gov/pubmed/1959371

Maybe non-invasive imaging like a CT venogram or MR venogram could delineate the anatomy.
centenarian100
Family Elder
Posts: 504
Joined: Mon Apr 15, 2013 9:51 am

Re: THE ROOT CAUSE

Post by centenarian100 »

dania wrote:I put this info out there to help others. Information is power. The more the better, in my opinion.
Indeed :-D
User avatar
MarkW
Family Elder
Posts: 1167
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England
Contact:

CCSVI syndrome not the Root Cause of MS.

Post by MarkW »

dania wrote:..............I am a venal anomaly. My right IJV has a loop in it and is forked and one of the forks runs across the front of my neck adjoining to the other side! Dr. was unable to venogram or treat possible blockages because of it!! I wonder if these oddities are our root causes? ..............For us, CCSVI is a symptom of the root cause of our problems............
Let us remember that Prof Zamboni says CCSVI syndrome is a treatable symptom of MS. His recent papers do not say that CCSVI is the root cause of MS. However, treating this unusual type of venous problem sounds complex.
MarkW
Mark Walker - Oxfordshire, England. Retired Industrial Pharmacist. 24 years of study about MS.
CCSVI Comments:
http://www.telegraph.co.uk/news/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
HappyPoet
Family Elder
Posts: 1414
Joined: Thu Jul 09, 2009 2:00 pm
Contact:

Re: THE ROOT CAUSE

Post by HappyPoet »

centenarian100 wrote:
dania wrote:I put this info out there to help others. Information is power. The more the better, in my opinion.
Indeed :-D
Agreed :-D
User avatar
dania
Family Elder
Posts: 1088
Joined: Wed May 12, 2010 2:00 pm
Location: St Lazare Quebec

Re: THE ROOT CAUSE

Post by dania »

elyse_peace wrote:dania,
it is always good to have information, but, sister, this news is rough! i'm sorry it is this way for you. i hope that a way to help you can be figured out.
wishing you a solution.
elyse
Better rough than impossible.
User avatar
blossom
Family Elder
Posts: 1394
Joined: Thu Dec 03, 2009 3:00 pm
Location: south western pa.
Contact:

Re: THE ROOT CAUSE

Post by blossom »

HappyPoet wrote:
centenarian100 wrote:
dania wrote:I put this info out there to help others. Information is power. The more the better, in my opinion.
Indeed :-D
Agreed :-D

you betcha!! :-BD
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”