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I find it very interesting about all the different kinds of venous problems that have been encountered by doctors when examining CCSVI patients. The most common problem we see is people with narrowing or twisting of one or both jugulars. But we know that other venous problems have been encountered. I've created a short list of the more unusual problems that I have seen reported. Does anyone have any other unusual situation to add ? Or maybe someone can help me find the citations for some of these :


1. WhyRwehere's husband with missing pre sacral venous plexus :

"My husband had his second procedure done yesterday, and the doctor said it went beautifully. His internal Jugular is now 10mm (originally it was .5mm). Unfortunately, she said there was nothing she could do about his missing pre sacral venous plexus problem. No stenting, just balloons...we are happy with that."

http://www.thisisms.com/ftopict-9450-.html

2. Rici's most recent "vein too big"

"Unfortunately Rici has new problems. Dr. Simka already did the liberation procedure concerning his left jugular but Rici still had some problems so they checked his veins again and found out that his right jugular is far too wide, about 3 cm!!! It is too wide to place a stent and Rici says that it's rather a water-hose than a vein. You can see it here, also the stent which is in the other side: http://img35.imageshack.us/img35/4845/20091221rici.jpg

http://www.thisisms.com/ftopic-8526-60.html

It causes a strong reflux and that's why Rici needs to be operated again. Maybe an open operation is necessary."

3. ErikaSlovakia - Left jugular valve problem

4. Missing a jugular vein

beechwood : (thanks to dialed_in and HappyPoet)

http://www.thisisms.com/ftopict-8515.html

He posted CT scans and is missing one jugular.

5. catfreak reported an obstruction of a jugular vein that was a web-like structure

Thanks to catfreak :

Would # 5 have been me?

Arachnoid Cyst in Sigmoid Sinus

More about the Arachnoid Cyst from catfreak :

"It was a cyst that formed in utero and ended up next to my left jugular obstructing the flow. Dr D said it was soft like marshmallow and when he stented the jugular it just indented the cyst."

Cat
_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

6. Mutley reported that his jugulars are "too short".

Thanks to dialed_in :

I think you mean Mutley for #6

Quote:
The op itself was performed by Dr Ludyga and someone else that I never got to meet so he will remain nameless. They initially tried to investigate my left jugular via my groin but couldn’t quite get to it due to obstructions caused by my neck muscles etc. So they ended up investigating this area by going in through my neck. They concluded that there wasn’t really much of a problem on this side but it did highlight an unexpected issue. In order to go in via my neck on the LHS I had to turn my head so that it rested on my right ear and thereby expose my neck. But doing this actually caused my jugular to stretch and twist sufficiently to actually block blood flow. The consensus here was that my jugulars are actually too short! This is quite interesting because although I’ve read about blocked/narrowed veins and even people who are missing their jugulars, this is the first time I’ve heard of problems being caused because they are too short.


http://www.thisisms.com/ftopic-8942-day ... sc-15.html

7. a vertebral extension is pinching a jugular

poor beechwood again : (thanks to dialed_in and HappyPoet)

http://www.thisisms.com/ftopict-8515.html

8. bestadmom reports a septum growing longitudinally down her extremely narrow right internal jugular.

from bestdmom :

"I haven't been liberated but my radiologist is perplexed with a septum growing longitudinally down my extremely narrow right internal jugular. There is no way to "push it aside" to get any flow. The vein isn't working at all."

9. kinga has a closed azygous vein

"hi,
-closed azygos vein-
this is what I have,unfortunately...

I'm patient of Dr Simka and Dr Kostecki,both of them are not really willing to operate due to risk.

kinga"

10. malformation of the carotid artery compressing the jugular

From Ana with wonderful 3D pictures on Dr Haacke's website :

"A user in our German forum (Riader) has a malformation of the carotid artery compressing the jugular: http://www.ms-mri.com/video.php?filesen ... y%201.flv&"

11. IJVs pinched by surrounding muscles

from cheerleader :

"Jeff's IJVs were pinched closed by surrounding muscles...probably splenius cervicus or splenius capitus."

12. One Jugular with upside down valve and another with membrane blockage

from wonky1 :

"I had an upside down valve in one jugular and a membrane blocking the other. I also have stenosis high up but Dr Simka feels this is secondary to the blockages as the stenosis opened up when I was ballooned.
I'm going back soon so he'll have another look then."

13. Mother and daughter : pancaked jugular and valve problems for mother, boney compression for daughter

"My daughter's right jugular vein was stenotic adjacent to the anterior arch of C1 - there was a boney compression of the right IJV at this location.

My left jugular was pancaked together for 3-1/2 inches. The valve at the junction of the jugular and the left brachiocephalic vein had narrowed segments. Two stents inserted - one at location of the valve

Sharon"

14. Dr Dake found flapping valves and unusual formations around one valve

From Shoshin :

"I had malfunctioning jugular valves on both sides. They looked like they were flapping up and down when they were supposed to be open so that was causing the blood to flow slowly and reflux.

I did not have any stenosis, although there was some tapering around the valve area. So nothing definitive could be seen on the MRV. Dr. Dake saw some black lines around the valve area and there was a largish (larger than the main vein) collateral vein going more-or-less just around the right jugular valve. There were no large collaterals on the left. So he thought it looked suspicious, but the collateral vein could possibly just have been a normal variation. Fortunately for me, it looked suspicious enough that he wanted to at least do an exploratory CT venography, which confirmed the abnormality and he performed balloon angioplasty on both sides."

15. An intra-cranial veinous malformation AND a corresponding missing jugular

This is from HappyPoet. I believe images are coming soon...

16. Lesion etiology is non-specific

Thanks to Cece. From a presentation by Dr Dake :

"Lesion etiology is non-specific (congenital/hereditary, osseous impingement, arterial compression, post-inflammatory, arachnoid granulation, etc., alone or in combination)"

17. A combo, osseous impingement, and arterial compression

From SammyJo :

Right & Left Internal Jugular Veins both pressed against cervical vertebrae bone (osseous impingement). Lower down the Left IJV was compressed by carotid artery.

I think you mean Mutley for #6

The op itself was performed by Dr Ludyga and someone else that I never got to meet so he will remain nameless. They initially tried to investigate my left jugular via my groin but couldn’t quite get to it due to obstructions caused by my neck muscles etc. So they ended up investigating this area by going in through my neck. They concluded that there wasn’t really much of a problem on this side but it did highlight an unexpected issue. In order to go in via my neck on the LHS I had to turn my head so that it rested on my right ear and thereby expose my neck. But doing this actually caused my jugular to stretch and twist sufficiently to actually block blood flow. The consensus here was that my jugulars are actually too short! This is quite interesting because although I’ve read about blocked/narrowed veins and even people who are missing their jugulars, this is the first time I’ve heard of problems being caused because they are too short.

http://www.thisisms.com/ftopic-8942-day ... sc-15.html

#4 is Beechwood

Three years of symptoms (cognitive difficulties, tinnitus, fatigue) and no answers. My scans show I only have one jugular instead of two, and the one I have is severely pinched. No answers from any Dr's so far, so maybe this can be a first step for me. Check these scans out. I hope this works

http://www.thisisms.com/ftopicp-71898-m ... html#71898

I think you mean beechwood for #4:

http://www.thisisms.com/ftopict-8515.html

He posted CT scans and is missing one jugular, and a vertebral extension is pinching the other jugular (perhaps this might be another category).

This scan is Case #3 on Dr. Haacke's website:

http://www.ms-mri.com/index.php

Would # 5 have been me?

Arachnoid Cyst in Sigmoid Sinus

Cat

Catfreak, Happy Poet and dialed_in,

Thanks for your replies !! I've added your information to my main post.

ozarkcanoer

Hi OC,

You can add me to your list.

I haven't been liberated but my radiologist is perplexed with a septum growing longitudinally down my extremely narrow right internal jugular. There is no way to "push it aside" to get any flow. The vein isn't working at all.

hi,
-closed azygos vein-
this is what I have,unfortunately...

kinga,

So your closed azygous is not operable with ballooning or stenting ? Is the tissue joined at a stenosis or does it just stop with no extension ?

ozarkcanoer

A user in our German forum (Riader) has a malformation of the carotid artery compressing the jugular: http://www.ms-mri.com/video.php?filesent=artery%201.flv&

Jeff's IJVs were pinched closed by surrounding muscles...probably splenius cervicus or splenius capitus.

ozarkcanoer-
as far I understood what doctors said,my azygos is probably stenosed so bad is completely closed at some point.Problem is,they say this kind of surgery is 3x more risky that stenting of vena cava (procedure for cancer patients in case of tumor blocking blood flow) so they are afraid to do it ...

Hi Ozarkcanoer
I had an upside down valve in one jugular and a membrane blocking the other. I also have stenosis high up but Dr Simka feels this is secondary to the blockages as the stenosis opened up when I was ballooned.
I'm going back soon so he'll have another look then.
I have re-occluded so I'll probably have stents.

I wonder Kinga, who are you seeing? Did you go to Simka(as in, is he afraid to operate on you)? And Wonky1, how did you find out that you re-stenosed? This has been an interesting summary to read! Thanks OC.

Why

I am surmising that I have re-occluded as most of my early improvements have vanished, Dr Simka agrees.
The terminology he used was re-occluded not re-stenosed. A stenosis was not the main problem and flow seems to open up the stenosis, he saw this during the operation.
I will know more when I get re scanned at the end of the month.
I can't wait to get those improvements back

Why-
I'm patient of Dr Simka and Dr Kostecki,both of them are not really willing to operate due to risk.