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

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1eye
 Post subject: bump
PostPosted: Wed Jun 08, 2011 5:40 pm 
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Location: Kanata, Ontario, Canada
bump

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Cece
PostPosted: Thu Jun 09, 2011 5:49 pm 
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www.lfpress.com/news/london/2011/06/09/18260706.html
Quote:
The first procedure, which restored blood flow in three veins, helped, she said — for example, she no longer loses her balance and falls from the disease that attacks the biological insulation for nerves.

But she’s still easily fatigued and confined to a walker or scooter, so O’Connor wants to go back a second time because doctors in Bulgaria say they can do now what was too risky last summer — open up a irregular vein.

This one leaves more questions than answers. What sort of irregular vein? Why is it less risky now? How does the Bulgarian IR intend to treat the vein? Is a second procedure without IVUS still not as good as a first procedure with IVUS?

Wishing her success and good health.
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1eye
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PostPosted: Fri Jun 10, 2011 11:00 am 
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Location: Kanata, Ontario, Canada
Just got back from my daily ride. I have realized that I no longer need the trike. I was able to ride my bike before, but one incident was enough to put my life partner off it, and she has now inherited my bike. The reason I mention this is because it is not always our own choosing that confines us to a walker or scooter. I just finished an hour and a half ride. I was pretty lame at the end, which is why I lost my bike. If we can't get rid of heat, and become lame, well, I came to a safe stop on my last two-wheeled bike ride, and fell over sideways. I was not dizzy. I was paralyzed. I couldn't move my feet off the pedals. I'm sure riders who are used to cleat shoes have found ways around this: stopping next to a stop sign and grabbing hold of it sounds like a plan to me.

The trike is fun but you can't put your weight on the pedals. I have one weak leg. On most uphill grades, I get 'er shifted down low enough in time, but because the wheels are so small there is hardly any of the usual centrifugal force and momentum. It's easy to stall on the way up a hill. So it's back and forth me racing ahead and getting left behind. Can't win unless it's all down hill.

I don't have a serious problem any more with my vision. The biggest problem I have now is with the way people are around me. I don't blame them. For a while before the procedure I was constantly covered with bruises, and I still bear the scars. I don't however, have my driver's license any more and doctors will not risk giving it back.

Consequently, I think this: in this world, like it or not, disability breeds disability. It's a hole very few have what it takes to dig themselves out of.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Cece
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PostPosted: Fri Jun 10, 2011 5:03 pm 
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If anyone has what it takes, 1eye, it might well be you.
I would feel better though if your Barrie doppler had come back CCSVI-free.
Were you biking with someone when that happened? What an experience. The plan for grabbing a stop sign.... I have examples in my own life, when I have to plan for things that might seem absurdly awful to people not dealing with this disease.
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1eye
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PostPosted: Sat Jun 11, 2011 10:42 am 
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Suzanne just came back from a ride with a woman who wears cleated shoes. She says she falls over periodically, has to get them adjusted. I just don't like having it happen with slip-ons.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Cece
PostPosted: Sun Jun 12, 2011 7:58 pm 
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http://dailygleaner.canadaeast.com/city ... le/1414447
Quote:
Immediately after receiving the treatment, Harriman said she enjoyed improved feeling in her extremities, was able to walk more steadily and had better control over her bladder.

Harriman, who has also completed physiotherapy and several other rehabilitative sessions in order to improve her balance and movements over the past few months, said the treatment changed her life.

"I took medication for 26 years. I went from one thing to another thing to another thing, with an increase here and an increase there. I haven't taken anything (for my bladder) since the day I was liberated," she said.
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Cece
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PostPosted: Sun Jun 12, 2011 8:02 pm 
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Slightly OT but I dare anyone to find me this many media reports of people with improvements from bee stings. Or 2000 citations in Google Scholar on bee sting therapy in MS. Bee sting analogies are no longer appropriate.
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Cece
PostPosted: Tue Jun 14, 2011 10:53 am 
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www.dailyheraldtribune.com/ArticleDispl ... ?e=3169729
Quote:
The 30-year old fog that had filled Darrell Watchorn's brain disappeared instantly as he lay on the surgeon's table.
Quote:
"When he opened up my left jugular vein to 22 millimetres, I felt the energy coming back, it was that instant," said Watchorn.
Quote:
"You're always in a bit of a dazed, fogged head and you can't keep your thoughts straight or anything like that. That was gone immediately."

Although his symptoms of MS remain, the procedure has given Watchorn a newfound control over his body. He can now take short walks with the help of cane.

"My left leg would feel like I was trying to swing a 50-pound weight," he said. "Now I can actually take a normal step and lift it."
Quote:
I know I'm not 100%, I never expected to be," Watchorn said. "At least now I have a chance, I have a life. I'm not lying on the couch 24 hours a day anymore."


Quote:
Although Ball's results weren't quite as instantaneous, her condition has also improved since the procedure.

"She used to have headaches so severe they would almost knock her off her feet. She hasn't had one since," Watchorn said.
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Cece
PostPosted: Wed Jun 15, 2011 6:55 pm 
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www.metronews.ca/edmonton/canada/articl ... -ms--page0
Quote:
McLaughlin spent $10,000 in April to have the liberation treatment at a clinic in Rhode Island.

"I can see colour again, and my energy levels have improved," he said.
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Cece
 Post subject: 'the fight of her life'
PostPosted: Sat Jun 18, 2011 7:37 pm 
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www.simcoe.com/news/article/1029096--th ... f-her-life
I was looking for improvement reports, here is a young woman not yet treated but hopefully an improvement-report-to-be.
Quote:
When she began to suffer seizures, fainting spells and paralysis on the right side of her body following a 20th birthday celebration in January of last year, blood tests and CT scans were ordered.
Quote:
Today her pain is constant, and muscle spasms are frequent, as is the paralysis that comes and goes.
Three weeks ago, Murray awoke to discover she had gone blind in her left eye.
Nerve pain her back "is pretty excruciating," she adds.
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Cece
 Post subject: 'Facts about venoplasty'
PostPosted: Thu Jun 23, 2011 9:20 am 
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www.newsreview.com/sacramento/letters-f ... id=2400140
Quote:
My husband is now two years past his venoplasty, with no MS progression or relapses. He is able to work full days as a film and TV composer.

:)
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Cece
PostPosted: Thu Jun 30, 2011 11:57 am 
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www.kingstonthisweek.com/ArticleDisplay.aspx?e=3195563
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"My energy is higher, I feel rested after six hours of sleep instead of needing nine, 10, 12 or 14 hours of sleep before I am able to function, I can get down on my knees and play with my sisters' children, I don't fall over anymore and I don't have regular choking spells.

"It has changed my life, my energy levels and my ability to do things."
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Cece
PostPosted: Fri Jul 01, 2011 8:36 pm 
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www.niagarafallsreview.ca/ArticleDisplay.aspx?e=3196211
Quote:
She said she noticed immediate results. Her sense of touch drastically improved as did her circulation, balance and cognitive abilities.

However, she said those gains are faded and MS is slowly regaining the hold it had on her. So Thomas is fundraising to take a trip to Pittsburgh in September to have the procedure again.
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Cece
PostPosted: Sat Jul 02, 2011 9:02 pm 
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http://www.montrealgazette.com/health/Q ... story.html
Quote:
"The angioplasty did not fix everything. But I am so happy; my life has changed completely," she said. "I have less fatigue, less migraines, and if I can continue walking with a cane instead of deteriorating, I will be very happy."
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Cece
PostPosted: Sat Jul 02, 2011 9:22 pm 
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www.thebarrieexaminer.com/ArticleDisplay.aspx?e=3196335
Quote:
When she arrived in New York, Gordon said she could no longer swallow properly, didn't have the strength to cough, suffered fatigue and what she calls 'brain-fog', or the inability to think clearly.

During the short afternoon surgery, Siskind widened both of Gordon's jugular veins and inserted a stint in the azygos vein.

Now, Gordon says she lives life to the fullest.

"My days are filled with what everybody else does now," she said. "There's no comparison to how I felt before, and how I feel now. I have a life again."
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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