Life returns for MS sufferer following U.S. surgery

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

Life returns for MS sufferer following U.S. surgery

Postby Cece » Mon Mar 28, 2011 6:53 pm

Life returns for MS sufferer following U.S. surgery

"I've been doing wonderful, absolutely wonderful - it's amazing," she said last week. "I'm a realist, but it worked. I don't know what to say except that it worked for me."

"My husband came in the recovery room, and noticed right away that my hands and feet were warm again," said Taylor. "My muscle spasms were non-existent the next night. I was on the computer, sitting cross-legged, and I couldn't do that before."

"I'm back to being an energizer bunny," she joked. "Now if I get fatigued, it's for a reason. My cognitive function is back now, too. My head doesn't feel like it's full of cotton. I don't understand all of the medical stuff (concerning the treatment), but I don't care. I had no other options."

For now, Taylor is reveling in her newfound physical freedom and the reemergence of a social life she had almost forgotten. She told the EMC how "phenomenal" it felt just to be able to go out on a Friday night with her husband and catch some live music.

Meanwhile, her 21-year-old son is finishing a tattoo meant to honour his mother. The first part, done while Taylor was awaiting treatment, had the word 'hope' and the letters 'MS'. Now, he is adding a hand holding the controls to a marionette puppet, the strings in the image are broken, and the puppet is walking away under its own power.


I love these outcomes. :)

www.emcbarrhaven.ca/20110324/news/Life+ ... S.+surgery
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Postby blossom » Mon Mar 28, 2011 7:34 pm

yes, we all love these outcomes. hopefully, sooner than later things get figured out enough that everyone can have this.
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Postby Lyon » Mon Mar 28, 2011 7:38 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:24 pm, edited 1 time in total.
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Postby Cece » Mon Mar 28, 2011 7:54 pm

It's not all sun and roses, is it Lyon.
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Postby Lyon » Mon Mar 28, 2011 8:04 pm

..
Last edited by Lyon on Wed Jun 22, 2011 5:24 pm, edited 1 time in total.
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Postby Cece » Mon Mar 28, 2011 8:20 pm

Lyon, I was agreeing with you....

The outcomes you posted were worth sharing. I've posted a lot about clotted jugulars, which is certainly not a rosy outcome. I am hopeful that the new consensus to back off on the big balloons, if that is as Dr. Sclafani has reported, will improve some of the outcomes going forward, but with so many people getting CCSVI treatment, a certain unknown percentage of complications are going to happen.

It's part of why I love outcomes like what the person in the article got, because it's not guaranteed, it's not to be taken for granted, and it is wonderful.
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Postby blossom » Mon Mar 28, 2011 8:43 pm

i think we have all taken off our "rose colored glasses" when it comes to the total picture. but, why does there have to be a good guy bad guy?

as long as someone isn't acting like mr. filthy mcnasty and has a story or opinion that may not be what we want to hear but it is what it is-what's the problem? same goes for the good stories-what's the problem? i love hearing them.

i'd rather hear all good-i wish i experienced good but i'm very happy for those who do. and, my heart aches for those who are experiencing the which way do i go now.
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Postby erinc14 » Tue Mar 29, 2011 8:26 am

Lyon wrote:
Cece wrote:It's not all sun and roses, is it Lyon.

You sound like I'm the one who should learn the lesson even though you're the one who spends her time highlighting ONLY the rosiest of the "rosy".

AND I'm the bad guy for trying to trying to balance the picture.

you must be s riot at any celebration :cry:
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Re: Life returns for MS sufferer following U.S. surgery

Postby scorpion » Tue Mar 29, 2011 8:44 am

Cece wrote:Life returns for MS sufferer following U.S. surgery

"I've been doing wonderful, absolutely wonderful - it's amazing," she said last week. "I'm a realist, but it worked. I don't know what to say except that it worked for me."

"My husband came in the recovery room, and noticed right away that my hands and feet were warm again," said Taylor. "My muscle spasms were non-existent the next night. I was on the computer, sitting cross-legged, and I couldn't do that before."

"I'm back to being an energizer bunny," she joked. "Now if I get fatigued, it's for a reason. My cognitive function is back now, too. My head doesn't feel like it's full of cotton. I don't understand all of the medical stuff (concerning the treatment), but I don't care. I had no other options."

For now, Taylor is reveling in her newfound physical freedom and the reemergence of a social life she had almost forgotten. She told the EMC how "phenomenal" it felt just to be able to go out on a Friday night with her husband and catch some live music.

Meanwhile, her 21-year-old son is finishing a tattoo meant to honour his mother. The first part, done while Taylor was awaiting treatment, had the word 'hope' and the letters 'MS'. Now, he is adding a hand holding the controls to a marionette puppet, the strings in the image are broken, and the puppet is walking away under its own power.


I love these outcomes. :)

www.emcbarrhaven.ca/20110324/news/Life+ ... S.+surgery


Can any of the doctors or members on here please explain to me how "opening up a vein/s" enables someone to be able to cross their legs when they could not before???
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Re: Life returns for MS sufferer following U.S. surgery

Postby CCSVIhusband » Tue Mar 29, 2011 8:51 am

scorpion wrote:
Cece wrote:Life returns for MS sufferer following U.S. surgery

"I've been doing wonderful, absolutely wonderful - it's amazing," she said last week. "I'm a realist, but it worked. I don't know what to say except that it worked for me."

"My husband came in the recovery room, and noticed right away that my hands and feet were warm again," said Taylor. "My muscle spasms were non-existent the next night. I was on the computer, sitting cross-legged, and I couldn't do that before."

"I'm back to being an energizer bunny," she joked. "Now if I get fatigued, it's for a reason. My cognitive function is back now, too. My head doesn't feel like it's full of cotton. I don't understand all of the medical stuff (concerning the treatment), but I don't care. I had no other options."

For now, Taylor is reveling in her newfound physical freedom and the reemergence of a social life she had almost forgotten. She told the EMC how "phenomenal" it felt just to be able to go out on a Friday night with her husband and catch some live music.

Meanwhile, her 21-year-old son is finishing a tattoo meant to honour his mother. The first part, done while Taylor was awaiting treatment, had the word 'hope' and the letters 'MS'. Now, he is adding a hand holding the controls to a marionette puppet, the strings in the image are broken, and the puppet is walking away under its own power.


I love these outcomes. :)

www.emcbarrhaven.ca/20110324/news/Life+ ... S.+surgery


Can any of the doctors or members on here please explain to me how "opening up a vein/s" enables someone to be able to cross their legs when they could not before???


It allows fresh blood flow (and fresh oxygen, as well as the removal of old stale iron-heavy dead blood) through a previously stenotic blood vessel (pre-liberation) to the area where the nerve(s) that would control the muscle movement in the spine (or central nervous system in general). Thus, if backwash of blood in the previously stenotic blood vessel is removed, and the vein has proper flow - and inflammation of the vein (due to iron, and sheer among other things) is removed - as well as potential leaking of blood crossing the BBB, well it's quite simple really to see how nerves would "heal" and people could do things they couldn't pre-liberation.

Thus, you couldn't get a signal to cross your legs before ... after liberation you can.

Same goes for my wife, not being able to point her toes before liberation, after she could.

But I assume you didn't really 'want' an explanation, nor another REAL LIFE example.

It's all really simple and logical, and more beautifully follows all the laws of simple systems engineering ... if you'd actually want to take the time to study it and understand it - I'll be happy to explain the theories of it to you. As well as the why's, as in why it makes sense ... why some people get results and others don't ... why EAE doesn't make sense ... and the others you seem to ignore. But maybe now you're just genuinely interested all of a sudden.
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Postby CaptBoo » Tue Mar 29, 2011 8:58 am

Post angio I can cross my left leg over my right without using my arms to lift the leg. I agree with CCSVIHusband's explanation.
<div>There be no dragons   ...Reese Palley</div>
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Postby soapdiva884 » Tue Mar 29, 2011 10:09 am

I soooo wish it was all rosey for everyone, but unfortunately it's not. I am glad to hear the good, bad and the ugly regarding CCSVI. Keep it coming!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Re: Life returns for MS sufferer following U.S. surgery

Postby ikulo » Tue Mar 29, 2011 2:46 pm

CCSVIhusband wrote: why some people get results and others don't ...


I am very interested in learning about this.
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Re: ccsvi

Postby Lyon » Tue Mar 29, 2011 2:52 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:25 pm, edited 1 time in total.
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Re: Life returns for MS sufferer following U.S. surgery

Postby fernando » Tue Mar 29, 2011 3:20 pm

scorpion wrote:
Can any of the doctors or members on here please explain to me how "opening up a vein/s" enables someone to be able to cross their legs when they could not before???


Obviously I am not a doctor, but it is known that steroids do reduce symptoms in RRMS. And they do that by reducing inflammation.

For me the basic explanation is that angioplasty relieves inflammation.

Up to a point I think that all dmd's are just sophisticated antinflammatory medicines.
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