.......

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
cheerleader
Family Elder
Posts: 5361
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader »

Hi L-
Get thee to Jacobs Neurological for testing...they are using the Zamboni testing on 1000 patients, and they understand what a "narrowed" or skinny jugular could imply.

read the whole thread, things are moving fast....
http://www.thisisms.com/ftopic-7438-day ... asc-0.html


cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
peekaboo
Family Elder
Posts: 623
Joined: Sun Feb 08, 2009 3:00 pm
Location: Arizona
Contact:

Post by peekaboo »

You should send the copies (to the experts)...and remember there is that elusive azygos
LR1234
Family Elder
Posts: 1517
Joined: Wed Feb 11, 2009 3:00 pm
Location: California
Contact:

Post by LR1234 »

......
Last edited by LR1234 on Tue Mar 06, 2012 12:52 am, edited 1 time in total.
User avatar
IHateMS
Family Elder
Posts: 168
Joined: Sun May 17, 2009 2:00 pm
Contact:

Post by IHateMS »

Is this where you called at Jacobs? 716-859-4125.

http://www.thejni.com/patients_patient.htm
User avatar
Sharon
Family Elder
Posts: 1285
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

L -

Yep, I have different sized juggulars. My right is larger than the left, but that could be because the left hasn't been do'in its job since it was blocked. The right has been working harder.
User avatar
Sharon
Family Elder
Posts: 1285
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

Call Cheryl - direct # (edited)

If you want Cheryl's phone # please PM me. It is not to be posted in cyberspace.

Sharon
Last edited by Sharon on Mon Jun 22, 2009 12:59 pm, edited 1 time in total.
User avatar
IHateMS
Family Elder
Posts: 168
Joined: Sun May 17, 2009 2:00 pm
Contact:

Post by IHateMS »

Thanks.
LR1234
Family Elder
Posts: 1517
Joined: Wed Feb 11, 2009 3:00 pm
Location: California
Contact:

Post by LR1234 »

.......
Last edited by LR1234 on Tue Mar 06, 2012 12:52 am, edited 1 time in total.
User avatar
Crabby
Getting to Know You...
Posts: 10
Joined: Wed Jun 10, 2009 2:00 pm

Post by Crabby »

LR1234 wrote:What a bummer about the no blockages or stenosis.
Zamboni found that 10% or so of the MS patients that he performed venography on did NOT have a blockage or stenosis of either jugular vein. However, those patients had one or more areas of stenosis in their azygos veins.

Make sure that your sonographer pays close attention to the vertebral vein, because that's where the sonographer is likely to find reflux if you have stenosis in your azygous vein.
User avatar
Sharon
Family Elder
Posts: 1285
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

L -

I do not know the answer for you. The MRI/MRV at Stanford showed the right jugular venous system to be significantly larger than the left. My blockage was big - a little over 3" in the left jugular vein (also, blocked the drainage from the facial veins to the jugular) The jugular was 99% blocked. I did not ask Dake, I am assuming the right was bigger because it was having to do all the work.
User avatar
whyRwehere
Family Elder
Posts: 917
Joined: Mon Oct 03, 2005 2:00 pm
Contact:

Post by whyRwehere »

Also, I think Marie mentioned that her blockage was not apparent straight on,
but if viewed sideways you could see it flatten out.

We are going to be in the States for the summer. I wonder if they are starting the Buffalo thing already or if they are scanning in the Autumn. Also, if they looking to ask people's insurance to fix it in the end, does that mean if you aren't having any, they won't bother looking at you? We'll probably just wait for here (France) to do it all.
User avatar
sou
Family Elder
Posts: 582
Joined: Sat Dec 20, 2008 3:00 pm
Contact:

Post by sou »

Hi LR.

Don't get disappointed with your results. Ok, you 've found a juggular larger than the other, or, better, one narrower than the other. Your doctor could say that this is normal. Of course it is... for him. He is responsible and educated to prevent deaths. I can assume that you are still alivve, so you are a proof that this hasn't killed you.

When I talked to my vascular surgeon, I was told that I should only check the azygos, because a clot there could kill me. The juggulars were not so important to him. But, remember. MS is NOT associated with stenoses but altered venous hemodynamics which COULD be caused by focal stenoses, but they could also be caused by a narrower vein or any other reasons, unknown so far.

Only ultrasound can measure velocities inside veins. You must accumulate evidence and form a big picture. Then show it to a doctor who can translate it. Remember that doctors consider normal what does not kill you or cause problems and CCSVI has not been proven to cause any problem for them. They were not educated on that.

The thoughts above are reasonable. But I also think that my cerebral venous system will be found normal. Am I the only one that thinks that will be the only one to have an unknown form of MS unrelated to CCSVI? :-)

sou

sou
LR1234
Family Elder
Posts: 1517
Joined: Wed Feb 11, 2009 3:00 pm
Location: California
Contact:

Post by LR1234 »

.......
Last edited by LR1234 on Tue Mar 06, 2012 12:53 am, edited 1 time in total.
User avatar
Sharon
Family Elder
Posts: 1285
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

L -
Look here http://en.wikipedia.org/wiki/Azygos_vein

Good picture and explanation of the asygous vein
User avatar
cheerleader
Family Elder
Posts: 5361
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Post by cheerleader »

L-
Sorry, I forgot you were in the UK...
While you're waiting for all of this to sort out, let's look on the bright side (cue Monty Python)-
your MS is fairly benign...if you continue to live a heart healthy life-good diet, exercise, stress reduction and supplements- you can keep your blood flowing.
the azygos vein runs along the right side of the thoracic spine (basically the length of your ribcage)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
Post Reply

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”