Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

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

Postby chrishasms » Tue Apr 28, 2009 8:45 am

Beside the number Cheer here is another question:

Are people actually improving or is it only in heat tolerance. Is it like the other treatments promising to give something back but we don't know how much a guy can get back, or is this actually something that may allow for complete recovery?

I missed it before if it was ever said and I am sorry if I am making people repeat stuff.
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Postby zap » Tue Apr 28, 2009 9:09 am

huh, there seems to be a lot of studies done assessing the effects on the brain of reversing the blood flow back up through the veins - since during heart surgery they need ways to keep the brain nourished. Seems that although this is commonly used, in most people it may not even be effective, since valves prevent such backflow from getting into the brain - in most people, but in some the valves are missing or defective ...

Anyway, not sure how applicable/useful this stuff is, but might be interesting to dig into 'retrograde cerebral perfusion,' 'spinal arteriovenous malformations,' and 'venous congestive myelopathy' (ie http://www.nature.com/modpathol/journal ... 0350a.html) ...
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Postby sou » Tue Apr 28, 2009 9:12 am

Hi Chris.

I believe that everybody agree that it is too early to tell what the future holds regarding this treatment. Only time will tell. Even Dr Zamboni is very cautious, which I admire.

I have found an article in the news that is somehow related to this thread:

http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2857

What do you think?

sou

cheer: I AM VERY HAPPY FOR YOU! Really! If I could, I would start jumping!
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby peekaboo » Tue Apr 28, 2009 9:56 am

ZAP -

what an interesting article ... I am going to have to read it off line (easeir to read for me, check med dic for interpretation etc.) If i understand it correctly it is also talking about lower spinal venous stenosis and therapy would include these areas as well. these drs. are in rochester ny....

SOU -

One would think that cholesterol the "good kind' would be instumental to cellular repair... Me & my man eat lots of avacado and use olive oil all the time. makes good eats as well :wink:
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Postby AndrewKFletcher » Tue Apr 28, 2009 11:08 am

You might want to do some research on Percin. A lethal toxin found in avacado. http://www.madsci.org/posts/archives/20 ... .Ot.r.html

peekaboo wrote:ZAP -

One would think that cholesterol the "good kind' would be instumental to cellular repair... Me & my man eat lots of avacado and use olive oil all the time. makes good eats as well :wink:
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Postby Sharon » Tue Apr 28, 2009 2:34 pm

Cheer - thank you for the update on Jeff. It will be interesting to find out how Jeff responds to the surgical procedure.

I am also interested in finding a doctor here in Denver (as is Chris). I will contact Stanford and see what I can find out.

Thanks again Cheer for all your research ---- all of this is kind of haunting me, because when I was diagnosed I remember asking the doctor if MS could be caused by blood flow obstruction. Of course we all know what the answer was!!!

Sharon
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Postby notasperfectasyou » Tue Apr 28, 2009 3:14 pm

I'm soooooo far behind now. Congrats Cheer! Did we cover how the blood back up leads to myelin damage? How does repair of the damage bring resolution to the issue of poorly conductive axons? Ken

I last read this thread to page 17 and if I must I will print the whole thing up and start again. but I'm hoping there is quicker way to get here. Maybe tonight is the last night I read about ICAM-1?
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Postby Terry » Tue Apr 28, 2009 3:19 pm

Dr. Dake said that Jeff's stenosis was caused by the muscles in his neck


Did you understand this, Cheer? Can you explain?
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Postby cheerleader » Tue Apr 28, 2009 3:29 pm

Terry wrote:
Dr. Dake said that Jeff's stenosis was caused by the muscles in his neck


Did you understand this, Cheer? Can you explain?


We saw it on the venogram/MRV. Jeff has very pronounced neck muscles...a combo of genetics, weight lifting, and trumpet playing. They have compromised the space for his jugular veins under his jaw. The veins look crimped and narrowed. One is completely blocked. Dr. Dake explained that veins are more fragile than arteries. The flexible stent will keep the vein open against the pressure of the muscle. This is just Jeff's personal situation. It will be different for each patient. Dake believes the only thing in common between MS patients will be the reflux, venous congestion, break in BBB and resultant demyelination...what causes the veins to be malformed will be different in everyone. That's why some claim cpn, some ebv, some gluten, etc., etc.
Your story will be unique...
Ken...don't read this whole thread. Lots of unimportant stuff. Read Marie's page and the papers linked there-
http://www.thisisms.com/ftopict-7098.html

AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Terry » Tue Apr 28, 2009 4:23 pm

and trumpet playing.


what causes the veins to be malformed will be different in everyone.


Good thing. I'd hate to tell my kids and grandkids.... um, yeah.....I have MS from....too much, yeah...blowing....um....blowing the trumpet.....yeah....

(Do I watch too much Family Guy?)

:wink:
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Postby zap » Tue Apr 28, 2009 4:45 pm

Huh. Then perhaps bad posture can cramp the veins in the mid back and neck - specifically the bad posture brought on by desk work - and that the increase in MS over recent years can be traced in part to the increase in bad posture-inducing lifestyles/careers?
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Postby peekaboo » Tue Apr 28, 2009 5:09 pm

touche' ZAP

specifically the bad posture brought on by desk work -
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Postby Hub » Tue Apr 28, 2009 5:58 pm

Joan - Thanks for being such a trailblazer and congratulations on hopefully healing Jeff!

JimmyLegs - This might have already been posted, but it appears that there might be a link between venous insufficiency and low zinc levels. Here's an intruiging excerpt from the following paper: http://www.springerlink.com/content/n207g5g3k2414n7w/

Chronic venous insufficiency... Depressed levels of zinc have been noted in patients with CVI and venous ulcer
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Postby peekaboo » Tue Apr 28, 2009 7:00 pm

Jimmy Legs is the goddess of zinc! & i will follow her anywhere..truth :D
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Postby Terry » Tue Apr 28, 2009 7:40 pm

Cheer,
I just re-read my post and please know that I wasn't capping Jeff's trumpet playing. Did it look like that?
I don't play the trumpet -wish I did. I was being silly.
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