cheerleader wrote:Wanted to give a breakdown of how Jeff's stenosis corresponds w/Zamboni's findings.
Jeff has "Pattern C" CCSVI. He has bilateral, atresia stenosis. This means both of his internal jugular veins are crimped closed. This pattern shows up mostly in RRMS patients, and is not common, because there is no involvement of the azygos vein. 86% of the MS patients Dr. Zamboni tested had some involvement of the azygos vein. Jeff doesn't.
I believe this is why Jeff's symptoms first appeared as brain issues: depression and fatigue, and why it took so long for him to be diagnosed. He does not have as many motor issues. He also does not have any spinal lesions, with the exception of one on the cervical spine. This one was enhanced at his diagnosis, and caused his numbness and tingling. That's what got him in the MRI tube and the MS diagnosis...but the brain issues were a problem for at least 15 years.
It will be interesting to see how the location of blockage in the veins relates to lesion location and disability.
We'll need to establish a vascular doctor resource, once we get enough interested. Look to your local universities, find out who are the vascular doctors who research venous insufficiency, cerebral thrombosis, jugular vein stenosis, and which schools have magnetic resonance venography technology.
So if he does the tests and you have it too, which of course you do, will he do the liberation immediately? How long is the total trip going to take? I would guess a week tops eh?
Loobie wrote:LOOBIE DISCLAIMER: Since I have decided to use my Mom as my patient advocate since this is so tough to follow up on when working full time and trying to exercise and stuff, she has since joined TIMS and is loobiesmom. Some of her posts may come across as the equivalent of showing naked pictures of you in the tub when you were little to your new girlfriend . So even though I'm freshly 43, I know I'm still her boy, so give her a break and don't tell her all the nasty stuff I've said about her on here over the years (just kidding mom )
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