This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all.

My radiologist and I have attempted to perform a doppler scan following the Zamboni protocol. However, we have found that we did not have enough information to perform it properly. In addition, we did not have a 2.5 MHz transmitter head to perform the transcranial.

But we have come across 2 very strange findings:

1. We couldn't detect the flow of the left jugular when standing upright. The flow of the right jugular was normal at this position, but at the level where it meets the jug, its diameter was extremely narrow and had a very high resistance.

2. After standing upright for a while and then lying supine, we saw the left jugular opening once again, but veeeeeeeeery slowly. The right one opened immediately. The doctor suggested that it seems as if there is some kind of fibrosis at the venous wall of the left jugular. When the doctor held my head to completely relax the muscles, the situation did not change.

Now, we have to analyze the data we collected. I have already started studying the studies again, so has my doctor.

It is a pity that Zamboni's team are so reluctant to provide more technical information. I keep my fingers crossed that we have found part of the problem and that we will have more data soon.

I only hope that we performed this part of the exam correctly.

I would love to have your comments.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

While I have nothing insightful of a technical nature to offer, I just want to pass on my encouragement. What you are discovering is intriguing and no doubt will prove to be beneficial to you and others in some way. It must be frustrating to feel that you kind of - sort of tested it and got decent data but not be certain. I do hope that someone else can offer you some specific guidance while others of us just commend and encourage.

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diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

Isn't it normal for the jugulars to collapse when upright? So wouldn't the strange thing be the other vein, which stayed open?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1665206/

Sou-
Have you seen Dr. Simka's very clear directions on doppler testing and what to look for? These might be helpful to understand the more technical aspects of venous return-

How to perform a CCSVI doppler exam

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I asked Dr Dake about that. He told me the jugulars still carry about 30% of the load when you're up.

Very interesting, Rokkit, since I had the same question as zap. Thanks for sharing the knowledge.

EDIT: Slighly off topic: Could the fact that while standing during the day the jugular veins are "less important" than while supine at night explain why some people have more symptoms in the morning hours after waking up?

Hi.

That was exactly what I asked the radiologist and answered that it is normal to see a reduced flow but seeing NO flow surely isn't right. And when changing position to supine, the vein shouldn't take 10 seconds to return to normal.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Sou, I have a tickle in my mind: don't I remember you had a neck problem when you were a lad? Was it on that side or am I crazy?

I'd reiterate what Cheer said be sure and read Dr Simka's paper she linked.......... it clearly explains the situation you had it seemed.

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Talk about hands on!

This is so exciting, I hope you get a break through soon.

Hi all.

Strangely, it is the left side that has another problem, not the mass I used to have. The muscles of the left side are somehow tight and I have terrible headaches originating from that side of the neck and spreading throughout the head.

My physio found it strange, because the muscles of the right shoulder are even tighter, and respond when their trigger points are pressed unlike those at the left. If it were to have headaches, I should have had them at the right side, not the left. But under the lights of occlusion, my radiologist said that it was normal for me to have headaches at the occlusion side of the head.

Perhaps this is an indication. And I still need to ensure that what we found is correct.

Thank you all!

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Radeck, when my husband saw the doctor in Paris, he suggested that it wouldn't hurt to try and sleep sitting up a bit(I did not mention the inclined bed theory to him). So my husband has been doing that, as much as he can...not the whole inclined bed thing. He also has an absent left Jugular Vein according to the doppler examination (this is the one thing that I know I had the best doctor in the world for-he totally knows the technique and the whole back story). Sure enough, my husband took out some of the leverage due to being uncomfortable one night, and received a bit of a high pressure feel to his head...so he is back to sitting up a bit.

Interesting. A friend of mine's mother has MS, and can only sleep comfortably in a recliner chair. She doesnt know anything about CCSVI or IBT - she has just learned that it is better for her and so she does it.