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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Cece
PostPosted: Sat Oct 29, 2011 2:21 pm 
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www.simcoe.com/news/article/1233984--ms ... er-surgery
Quote:
“It has helped with the fatigue a bit, but I don’t see anything miraculous. I don’t know if it is a placebo that I want to feel better. It hasn’t given me the positive change I was hoping for,” he said.
Quote:
But [his wife] said she noticed small changes right away.
“I didn’t say much to Spencer at first because as much as we wanted the miracle of immediate improvement, the reality is it could take weeks or months to notice change,” she said.
“I, however, noticed his posture. Spencer for a few years (prior to surgery) would find it hard to stand straight. He’d usually have to lean against a wall, sit or lean on me.”
And he doesn’t seem as tired as usual, said Bev.
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Cece
PostPosted: Tue Nov 08, 2011 10:48 pm 
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http://www.windsorstar.com/health/Liber ... story.html
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My family and friends say I am walking better. I have more energy, my pain level is significantly lower, I am tolerating heat much better and sleeping more soundly. The brain fog is gone. I have been going to the gym three times a week and getting my strength and balance back.
Quote:
On Oct. 7, my daughter was married and I walked her down the aisle. I danced all night long and did not get to bed until after 1: 30 a.m.
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Cece
PostPosted: Fri Nov 18, 2011 9:51 am 
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www.thesudburystar.com/ArticleDisplay.aspx?e=3375199
Quote:
Huggins, in her mid-60s, said a simple 15-minute surgical procedure relieved her of the excruciating pain she suffered while living 25 years with multiple sclerosis.

Huggins underwent the procedure March 22 in Clearwater, Fla., and said it provided "instantaneous relief."
Quote:
"Life, for 25 years, was getting up in the morning, and while still in bed, wiggling your toes, wondering if you had legs that day," she said.

Activities of daily living drained her of energy and she slept 15-16 hours a day. "The pain really exhausted me," she said.

Before liberation therapy, Huggins was suffering electric shock like pains in her arms up to 50 times a day, as well as severe mood swings and "brain fog," the inability to concentrate or focus for any length of time.

Shortly after the surgery, the pain in her arms and legs faded and her brain fog cleared.

Huggins said she is now "up with the sun in the morning" and is able to put in a full day without a nap. She sleeps seven hours a night and wakes up feeling refreshed.

"Having twice the hours in a day is like I'm catching up with my life," she said.
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Cece
 Post subject: Re: Improvement reports
PostPosted: Fri Nov 18, 2011 9:54 am 
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http://www.thesudburystar.com/ArticleDi ... ?e=3375199
Quote:
Like Huggins, Gauthier said the relief after surgery was incredible.

"It was just like, oh my God, I'm alive again."
Quote:
Unfortunately, she and her husband struck a deer while driving home from Port Perry three months later and the veins unblocked by the procedure closed again.
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Cece
 Post subject: Re: Improvement reports
PostPosted: Wed Nov 23, 2011 3:26 pm 
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Just a note: this thread is not just for quotes from Canadian newspapers, but for anyone to post if they've had improvements after venoplasty. Tell us your story! I love hearing them. :)
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erinc14
 Post subject: Re: Improvement reports
PostPosted: Fri Nov 25, 2011 2:02 pm 
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Location: Montreal
one thing i've noticed this past month is no headaches which were a nightly occurrence for 3-4 years , usually wicked . i even had them in october . i just hope it keeps up.
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HFogerty
 Post subject: Re: Improvement reports
PostPosted: Fri Nov 25, 2011 8:53 pm 
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It has now been over one year and a month since my procedure. I have not had the restless legs come back. The last day I took medication for it was the NIGHT BEFORE my procedure (I had been taking the medication for over two years with increasing dosage every three months) I could not sleep without it. I now sweat again especially when I go to the gym. Heat intolerance much better. The fatigue is completely gone. I actually have to get out of bed in the morning due to the fact that I am rested (that in itself is a miracle). Although embarrasing for me to bring up, I no longer have any urinary symptoms (urgency, etc.). Although the strength in my right leg has not gotten any better, I consider myself EXTREMLY fortunate for the benefits I have received. I wish my good fortune to all who undergo the procedure.
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Cece
 Post subject: Re: Improvement reports
PostPosted: Tue Nov 29, 2011 3:48 pm 
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It's been nine months since my first procedure, and four months since my second. I have sustained improvements in sweating, hearing, sense of taste, vision, depth perception, cogfog, fatigue, heat tolerance, ability to exercise, sleeping, color perception, foot drop, and balance. My CCSVI presented as severe bilateral jugular stenoses, treatable by ballooning.
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Cece
PostPosted: Tue Nov 29, 2011 3:50 pm 
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http://www.trurodaily.com/News/Local/20 ... reatment/1
Quote:
"I was taking two or three, one-hour naps every day. I would get to the point where I just felt like I was going to fall over," Anderson said. "And, now, occasionally I take a (daytime) nap every, maybe three or four months."
Quote:
"It's been 16 months since I had the procedure and I'm still doing well," said Anderson. "I have times where I'm tired but that is a normal tired that anybody would have when they're doing a lot."

In fact, at the rate her MS was progressing, Anderson firmly believes she would either be walking with a cane or confined to a wheelchair by now.

Instead, she is up early every day, feeling energetic and wanting to be on the go.

"I would do it again if I had to," she said, of the procedure. "I feel as though this procedure has stopped all progression with my MS."
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Cece
PostPosted: Tue Nov 29, 2011 3:53 pm 
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http://www.trurodaily.com/News/Local/20 ... reatment/1
Quote:
Paddi Lemon recalls all too well the trying times of being tired all the time.

"[....] ... so for me, getting rid of that fatigue was huge."
Quote:
And while she still does use her cane some, it's not as necessary as it once was.

"I couldn't go without my cane before," she said. "Compared to where I was 18 months ago I'm still feeling so much better."
Quote:
"I've gone from doing, a year and a half ago, 10 minutes on the recumbent exercise bike at the gym to 45 minutes," Lemon said. "That didn't happen overnight. That took over a year to get to that point. But had I not had the procedure done, I might have been going backwards to five minutes on an exercise bike."
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Cece
PostPosted: Sat Dec 17, 2011 9:10 am 
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http://www.recorder.ca/ArticleDisplay.aspx?e=3408208
Quote:
In 2010, Megan had to give up a promising teaching career in Ottawa when the onset of harsh MS symptoms sapped her energy and she left work.

"She was just sleeping her life away. She had no strength," said Francis.

But after receiving the CCSVI treatment in Rhode Island in November, Megan has regained much of her health and returned to teaching part time in September, said Francis.

"And now she's expecting her first child."
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dlynn
 Post subject: Re: Improvement reports
PostPosted: Sat Dec 17, 2011 12:31 pm 
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After all three of my procedures, (third one lasting longest) I noticed a reduction in pain and fatigue. I can now go a whole day
without falling asleep. I have so much more stamina.(thank God) And thank you Dr. Suchin!
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Cece
PostPosted: Sun Jan 22, 2012 10:41 am 
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'MS patient seeks ‘re-liberation’ in U.S.'
http://www.theobserver.ca/ArticleDisplay.aspx?e=3418820
Quote:
"There was great improvement," he said. "My brain fog lifted and it's still gone. My incontinence is gone. I could tolerate heat again and my fatigue went away."

Most significantly, mobility in his right arm and in both his legs improved.

"I wasn't able to get out of my wheelchair but I was able to walk in a pool for the first time in six years," he said. "That was heart-wrenching. My therapists were crying with me."

He regained some movement in his right arm and his right hand and fingers worked again.

"I was shocked, really, at how fast that happened," he said. "Within an hour of the treatment, I was able to move my toes. It was exhilarating."

Quote:
Fernandes' exhilaration at the results was dampened in the fall when he began noticing the return of some of his old symptoms.

"I can still move my legs but not as well," he said. "And the brain fog is returning to a degree." Periodically, he's short of breath.
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Cece
PostPosted: Sun Jan 22, 2012 10:45 am 
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'Gains and setbacks after surgery'
http://www.thesudburystar.com/ArticleDi ... ?e=3430782
Quote:
The fatigue that once kept Kim Cooper from the work and play that many healthy adults take for granted is replaced by enough energy at times to outpace her own family.
Quote:
More than a year after the procedure, her cognitive and bladder functions are still improved, she isn't crippled by fatigue and she can tolerate the heat, even staying out in the sun longer than her husband, Rob, during a recent vacation to Jamaica.

He watched her rebound to a level of health that he hasn't seen in years before the MS symptoms started taking their toll and causing her to leave her job.
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Cece
PostPosted: Sun Jan 22, 2012 10:47 am 
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'Gains and setbacks after surgery'
http://www.thesudburystar.com/ArticleDi ... ?e=3430782
Quote:
Carol Blackburn, 57, is already on her third and final treatment, unable to afford another $12,000 medical appointment abroad.
Quote:
She immediately regained mobility and didn't need her cane or walker after the first procedure in Los Cabos, Mexico, in November 2010.
Quote:
Blackburn's symptoms returned about six months later, and she repeated the procedure unsuccessfully a year after the first treatment, and again five days after that with some success for upper body strength but little gain with her ability to walk.

It's unclear if her worsening fatigue is the result of the disease or medication, she says, adding the procedures cost more last year with the use of specially medicated balloons.
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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