Improvement reports

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Cece
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MS patients not giving up

Post by Cece »

http://www.cbc.ca/news/canada/newfoundl ... x-608.html
"The result is excellent. Before I went, I could not talk on the phone or eat anything and the day I got back from New York, I sat down and ate a hot turkey meal," he said.
Cece
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'A liberated life'

Post by Cece »

http://www.kamloopsnews.ca/article/2012 ... rated-life
The relief was immediate. The day after his surgery, he and wife Suzie went for a day-long walk in the 35-C heat — heat that two days earlier would have made him wilt in minutes.
Twenty months after his surgery, Kohorst said he has had some backward steps, but he’s better off than he was and he’s finding other ways to help keep the MS at bay.

Now 38 years old, his mobility has improved from when that Kelowna nurse predicted he’d be in a wheelchair by age 40.
Cece
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Re: Improvement reports

Post by Cece »

http://northbranford.patch.com/articles ... ferent-way
She had the procedure done in 2010 and though, two years later, doctors confirmed her veins had recollapsed, she saw the benefits.

“I felt immediate relief after the procedure but now the MS is progressing,” said Kelley. I don’t have symptoms, but my MRI shows progress.”
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dania
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Re: Improvement reports

Post by dania »

That's the problem. Veins collapsing/ closing, whatever. You get improvements when blood is flowing. How to keep the veins open??????????????????? Too many reporting this problem.
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Rose2
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Re: Improvement reports

Post by Rose2 »

Hi All. I have not visited this site in quite some time but thought I should check in now. It is now 3 years post CCSVI diagnosis and treatment. I am still symptom free. I take only baby aspirin daily. I have my life back in full form.
Dr. Dake treated me in 2009. I have a stent in my right jugular and one in my azygous. The pain is gone. The fatigue and Fog are gone.
I continue to gain strength daily. I was diagnosed 2001 and was pretty much house bound for the time until 2009 and much of that in bed.
I found TIMS and Cheerleader while I was looking for wheelchair info. I learned of CCSVI that day. Never did buy the wheelchair!
I am one very lucky and very grateful person.
Just wanted to report in that everything is still holding up and I am not limited in anything I do.
Best Regards, Rose2 :-D
Cece
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Re: Improvement reports

Post by Cece »

That's great news, Rose2. Three years post treatment! I'm a year and a half out but also doing well.

a link to another improvement report in the news: http://in.reuters.com/article/2012/10/0 ... 6320121005
"I have already noticed little changes. ... One day I was typing on the computer and halfway through kind of stopped and said, ‘Wait a minute, my hands aren't trembling as much,'" she said. "Every day I am kind of noticing little differences."
Last edited by Cece on Fri Oct 12, 2012 12:34 pm, edited 1 time in total.
Cece
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ANNETTE FUNICELLO: HER LIFE WITH MULTIPLE SCLEROSIS

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http://www.ctvnews.ca/w5/annette-funice ... s-1.984202
He was in the procedure room with Annette’s nurses -- and says he saw improvements right away when doctors opened up blockages with a balloon and used a stent for a vein.

“When they started the procedure she looked more alive. She was brighter than she was before.”

“I saw in front of my eyes things changed -- the glow of her face came in,” he says.

But Glen says there was another noticeable improvement. Patients with MS often have problems swallowing because of damage to parts of their brain, causing them to sometimes choke on their own saliva.

Before the treatment Glen says he would be awake several hours through the night to suction saliva from Annette’s mouth so she would not suffocate. Now she can get through the night without his help.

But Annette’s doctor Dr. Jeffrey Salberg says Annette’s improvements may be in the eye of the beholder.
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Re: Improvement reports

Post by Cece »

http://www.nytimes.com/2012/10/28/magaz ... d=all&_r=0
Karnes uses a wheelchair and can barely speak as a result of M.S. He was elated that when his brother and caregiver, Randall, helped him out of bed that morning, his foot was able to move in a way it hadn’t in years. He demonstrated his newfound ability to touch the tips of his thumb and forefinger.
“Godsend,” Jack kept repeating. “Godsend.”
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Re: Improvement reports

Post by Cece »

http://www.nytimes.com/2012/10/28/magaz ... d=all&_r=0
Although still using the cane I’d seen him with at an earlier meeting, he was buoyant as he sat down to eat. He said he could already notice improvement in his symptoms.
He says he sleeps better and is more clearheaded, but those are things I can’t see. There’s no improvement in his mobility or his speech.
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Have ailment, will travel

Post by Cece »

http://www.ucobserver.org/features/2012 ... nt_travel/
“Within 12 hours, the fog was gone, my head was clear, and it’s been that way ever since,” says Brown. “Some people didn’t understand why I would do this. But they aren’t inside my body and they don’t know what I was going through.”
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Re: Improvement reports

Post by Cece »

http://www.repubblica.it/salute/medicin ... -46334257/
"Six months after the operation I consider myself cured of multiple sclerosis."
"I'm not only completely without symptom: I was given a second life,"
Pavarotti's widow, six months after venoplasty
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'Out of country treatment gives woman hope'

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http://www.chathamdailynews.ca/2012/12/ ... woman-hope
"Her legs used to be really really cold and blue, because the circulation wasn't going," said Bourgoin. "After the procedure was done you could feel part of her legs warming up. Six hours from the procedure only the tip of her toes were cold. A half-hour later everything was warm."

Lozon was able to feel her son's hair for the first time since 2009.
Lozon loves the fact her son gets to interact with her as his mom, not her and her wheelchair or walker.

"It's great I can do my own bath, I can wash Joey, give him his bath too, I can finally do my own hair...no offence," Lozon said, smiling at her mother. "We do puzzles, walk to the store, (I) zip his coat and put on this gloves. I've got my mind back."

Her recovery is on track and she's relearning how to write and use fine motor skills, along with relearning to balance while walking.
"I know what it's done for me. It gave me my life back," she said, smiling widely. "I'm living life, I really am."
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Re: Improvement reports

Post by Cece »

http://www.yorkregion.com/community-sto ... y-march-2/
Diagnosed with Primary Progressive MS in late 2009, the avid outdoorsman who loves to fish and hunt also enjoys promoting the outdoors and came up with the idea of a fishing derby as fundraiser.

The Keswick resident knows first-hand what money raised for awareness, research and treatment can mean for those struggling with the condition.
He says he was lucky enough to travel to Poland to have CCSVI treatment with AMEDS Centrum in October of 2010 and credits the procedure with greatly improving his balance and leg strength.
improvements in a PPMSer
Cece
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Re: Improvement reports

Post by Cece »

http://www.cbc.ca/news/health/story/201 ... hment.html
These days the 59-year-old says she has renewed energy, one of the benefits — she credits — of a controversial treatment for MS.

“The numbness is gone out of my feet…I died and went to heaven. It's just fantastic,” she said.
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Mom's Fight For Treatment And Diagnosis Changes Daughter's L

Post by Cece »

http://www.ctnow.com/lifestyle/parentin ... 1966.story
Doctors cleared the teen's vein, almost entirely blocked by a membrane. "I came out and my cheeks were pink," says Lotty. "Normally I'm a very pale person because the blood hadn't been getting to my face."
Squire-Vigue, empowered by her diligence, finally feels peace: "I've got a new kid! It's a miracle, a true miracle."
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