CCSVI patients' log

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

Postby mrhodes40 » Mon Jun 08, 2009 4:41 pm

Hub, wow!!! Thanks for posting this any spinal lesions? that azygos issue,....
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
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Postby cheerleader » Mon Jun 08, 2009 5:24 pm

Hub wrote:Patient: Hub's wife: RRMS with approx. 25 brain lesions, but EDSS is 0.

MRV findings: Moderate/severe narrowing of internal left jugular between C-1 and C-3; mild narrowing of internal right jugular and azygous.

Next step: either venography with direct pressure measurements to determine physiological significance of MRV findings or go straight to venography + angioplasty w/ or w/o stents.


Thank you for posting, Hub. Please keep us informed as to what procedure is chosen. We know you've had an interesting day!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Wed Jun 17, 2009 4:01 pm

I'm ready to pass along some information about my case before I have my appointment on the 14th. Would welcome any comments, especially about lesion location and the implications as that is the part that is hardest for me to understand. (I'm thinking my case may be similar to Hub's wife.) And I will share this and the CD of the MRIs with Dr. Dake beforehand.

Patient: Randi
Diagnosis: RRMS in spring of '04
Medication: Copaxone every other day
Other efforts: diet, supplements, etc. all in support of endothelial health (although I didn't know it at the time!)
EDSS: pretty much 0
Symptoms: occasional tingling in my forearms and hands, a bit of fatigue, some heat sensitivity, and, not sure if we want to include this stuff as well, but cold feet/hands and minimal sweat
Lesions: Brain: Right Internal capsule. Bilateral periventricular white matter. Corona radiata and centrum semiovale. Right cerebellum. Ventral left medulla.
C-spine: most significant lesions are at L3/L4 levels

Thanks!
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Postby Sharon » Wed Jun 17, 2009 4:10 pm

Arcee -

C-spine: most significant lesions are at L3/L4 levels


This would be the asygous vein. Interesting that you are still at an EDSS of 0.

and, not sure if we want to include this stuff as well, but cold feet/hands and minimal sweat

Yes, include everything you can think of - be sure to start your log for Dr. Dake with your symptoms.

Sharon
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Postby peekaboo » Wed Jun 17, 2009 4:59 pm

i do not believe the Lumbar spine equals the azygos vein. azygos is thorax only...diaphram up to vena cava...

Hub thanx for posting your wife's results...sounds like mine except the lumbar activity EDSS off the scale unlike your wife

My pressures are posted on holly at stanford thread...they were measured during the operation
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Postby mrhodes40 » Wed Jun 17, 2009 5:05 pm

You can't see the lumbar vertebrae on a c-spine, that must be c 3-4.... rather than L

The lumbar spines are part of the cauda equina and not an area where MS lesions can be..........
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
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Postby Sharon » Wed Jun 17, 2009 6:08 pm

Thanks Marie for clarifying the c-spine - I was wondering about the L3/L4 levels because we have not talked about them - also, had never heard of lesions in the lumbar. I learned something!
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Postby Loobie » Thu Jun 18, 2009 5:14 am

I think the only times there can be demyelation around the lumbar area is in Devic's where the entire myelin sheath that encapsulates your spine has long lesions up and down the spine. Not sure about that though. All I know is that my "MRI nightmare" day they did my lumbar spine.

Randi if we don't hook up at Stanford I'm going to be pissed!! OK, that's the terminology my 27 year old son uses 8O ..........if we don't meet out there I'm going to be pissed! I'm going to be out there from Sunday the 12th to Saturday the 18th. I'm going to be "hanging with a local", so if there's any chance that we may have to meet up when one or both of us aren't hurting, I'd love to have some lunch or something. But it looks like I'll be having the surgery the day you are having your MRV. Can't wait to meet you!
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Postby Arcee » Thu Jun 18, 2009 6:32 am

Well my neuro, who I really like, typed it with the L, but I guess he mis-typed. And like I've said, it's the one thing, the actual location of these lesions and the implications, that I have not focused on so I am very, very glad that you all are up on it!
So, if you were going to bet, what do you think Dr. Dake is going to see on me??
Lew, we absolutely will meet. I will be there from the afternoon of the 13th to the 18th. I'll PM you and we can figure out some options and swap cell info.
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Postby mrhodes40 » Thu Jun 18, 2009 8:44 am

Found Here

Just a reference about MRI's.... I like to reference my comments when possible....
Characteristic places (but not the only places) are peri-ventricular, juxtacortical, the corpus callosum, the cerebellum and the cervical spine. Also, important and often very symptomatic lesions are found in the brainstem and the thoracic spine. The spinal cord ends at the bottom of the thoracic spine, so there is no such thing as a lumbar spinal cord lesion. The scarred lesions will be evident as light, bright (hyperintense) areas on the T2 images. These are the classic MS lesions or "plaques." But, with just the regular MRI image one CANNOT say if it is old and dormant or if it has active inflammation in or around it.


I know that devics can have lumbar issues and it such are seen it is a deifferential for MS vs devics
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
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Postby Loobie » Thu Jun 18, 2009 9:44 am

Arcee wrote:Lew, we absolutely will meet. I will be there from the afternoon of the 13th to the 18th. I'll PM you and we can figure out some options and swap cell info.


Sounds good Randi. I can't wait!
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Postby peekaboo » Thu Jun 18, 2009 10:48 am

I just want to go to stanford to meet you guys :D too bad i am not made of money or i would want to meet everyone here on TIMS
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Postby cheerleader » Thu Jun 18, 2009 12:32 pm

peekaboo wrote:I just want to go to stanford to meet you guys :D too bad i am not made of money or i would want to meet everyone here on TIMS


In my imaginary dream world (which is quite nice, I might add!) we all are able to get together, face to face, in a beautiful locale. We each raise a glass of fine champagne to toast victory in this battle. The sun is setting, the Italian cypresses are merely vertical shadows against the lavender-streaked sky, and the terrace is lit with glowing candles...
(I don't think it's heaven, 'cause there's dancing and booze...)
A girl can dream, right?
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Thu Jun 18, 2009 1:15 pm

Maybe a Stanford reunion is on the horizon. Maybe we will all become famous and wanted by the California media for interviews. We "hold them up" - it's all or none of us!

Sharon
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Postby Arcee » Thu Jun 18, 2009 2:44 pm

Sounds like a wonderful world.

At the very least, Lew and I will do a joint post from Stanford.

And given that Lew is involved, it could really be a joint post

:lol:
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