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

Postby cheerleader » Fri Jun 19, 2009 1:20 pm

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
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Postby peekaboo » Fri Jun 19, 2009 1:23 pm

You should send the copies (to the experts)...and remember there is that elusive azygos
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Postby LR1234 » Fri Jun 19, 2009 1:53 pm

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Postby IHateMS » Fri Jun 19, 2009 2:23 pm

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

http://www.thejni.com/patients_patient.htm
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Postby Sharon » Fri Jun 19, 2009 2:26 pm

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.
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Postby Sharon » Fri Jun 19, 2009 2:27 pm

Call Cheryl - direct # (edited)

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

Sharon
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Postby IHateMS » Fri Jun 19, 2009 2:32 pm

Thanks.
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Postby LR1234 » Fri Jun 19, 2009 2:36 pm

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Postby Crabby » Fri Jun 19, 2009 2:50 pm

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.
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Postby Sharon » Fri Jun 19, 2009 2:53 pm

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.
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Postby whyRwehere » Sat Jun 20, 2009 12:46 am

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.
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Postby sou » Sat Jun 20, 2009 2:13 am

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

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby LR1234 » Sat Jun 20, 2009 2:30 am

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Postby Sharon » Sat Jun 20, 2009 6:29 am

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

Good picture and explanation of the asygous vein
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Postby cheerleader » Sat Jun 20, 2009 8:00 am

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
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