Sticky Suggestion

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

Sticky Suggestion

Postby mormiles » Wed Jun 24, 2009 1:22 pm

Hi guys,

I've been lurking on this forum for a few weeks now, trying to educate myself on CCSVI, and trying even harder to locate and keep up with the post-op results of the venous stent insertion patients. Those post-op results are exactly what potential patients and physicians are looking for when considering whether or not to pursue treatment. Unfortunately, they are rather tough to find.

It would be very helpful if each insertion patient kept a sticky post where they report post-op changes and improvements. It would be helpful for the patient to include pre-op EDSS scores or mobility descriptions, other pre-op symptoms, how long with MS, etc. Also, questions could be asked and answered concerning changes. In a perfect world, these threads would be more "clinical" and less conversational.

Thanks for "listening."
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Re: Sticky Suggestion

Postby NHE » Wed Jun 24, 2009 1:29 pm

Hi Mormiles,
I think that this is the thread that you're looking for.

CCSVI patients' log

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Sticky Suggestion

Postby mormiles » Wed Jun 24, 2009 1:49 pm

Thanks NHE, Yep, I've been monitoring that thread. It's become highly conversational. Also, I think separate sticky threads per patient would be more helpful. Plus, it seems like some updates are due. Sorry to sound impatient, but it's hard to be meek and patient when you're as interested as I am. But wait I must, and patient I must be like anyone whose life is colored by MS.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby cheerleader » Wed Jun 24, 2009 2:03 pm

Hi Joyce...
NHE sent you to the right place. Glad to see your name pop up, as I followed your journey with your husband Steve.

It is hard to quantify post-op results so soon. My husband Jeff is the farthest along at 7 weeks. His immediate changes were reduced fatigue and increased energy. He was never disabled, at a 1.5 EDSS, his issues were mostly brain related, with some bladder issues and leg pain and spasms. He still has these issues, but at a reduced frequency. We are hoping the stents will stop the assault of reflux and slowed perfusion in his brain- which was created by his closed up jugulars. He will have a new MRI on July 6, to see if there is any decrease in his lesion load, or healing. The patients' log will give you further info on the others.

I was hoping the patients' log would remain more informative and less chatty....but it's very tough to stop the back and forth, since this is such a new and exciting avenue. Perhaps it can be cleaned up and posted as a sticky once we have more concrete information. Good idea. And Dr. Dake will be writing up all of his findings for publication once he's completed his study. He is seeing more than just the TIMS gang.

Make sure to read all the papers in Marie's CCSVI research sticky, read the original CCSVI thread (all 50 pages- I'll bump it for you) -these are the essentials.
Wishing you and Steve the best,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Wed Jun 24, 2009 3:06 pm

Hi Joyce -

These topics just seem to get away from us!! We try to keep on topic, but as Cheer mentioned there is just so much going on it has become almost impossible.

Jeff, Marie, and I started our own post-op topics - I have not updated mine for this week yet - was waiting for my blood tests results to come back this afternoon.

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Sticky Suggestion

Postby mormiles » Wed Jun 24, 2009 3:16 pm

You guys are terrific! Thanks for not being aggravated with my impatience. I feel like a pacing panther, if truth be told.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Location: 75098


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