Improvement reports

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

'MS patients to rally in Halifax today'

Postby Cece » Thu May 05, 2011 9:36 am

www.capebretonpost.com/News/Local/2011- ... ax-today/1
“Before (treatment) if we were going to visit you at your house, she would have to take her shower the night before. Now she can take a shower in the morning and go for the day. That is a considerable difference.”
“In our world, that is an amazing thing. Quite frankly, if Shirley never got any worse than what she is today, we would be quite satisfied.”

Approximately six months post-procedure (after treatment last year.)
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MS patients call on Canada, provinces to support liberation

Postby Cece » Thu May 05, 2011 5:33 pm

http://tinyurl.com/6j59wa9
The 59-year-old had the procedure at a clinic in Albany, N.Y., last summer.

“I never had the ability to stand here and hug my grandchildren and spend my life with them as much as I do now,” Mr. Donovan said Thursday
Mr. McLaughlin had the procedure two weeks ago in Rhode Island.

“I can now see colour, my energy level is improved dramatically, my cognitive skills have improved, and the results are real,” Mr. McLaughlin said.

“It's not a cure but it sure makes a dramatic improvement in the quality of life of someone who is waking up every morning with the nightmare of MS.”

There's that "I can see color" improvement that I had too. And I'd had no idea that I hadn't been seeing color the way others see color.
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MS patients rally for 'liberation'

Postby Cece » Thu May 05, 2011 5:36 pm

www.torontosun.com/2011/05/05/ms-patien ... liberation
“I’ve got my balance back, the dizziness is gone” Piercey said, at a rally outside Queen’s Park Thursday. “My fatigue is gone, I no longer have to take afternoon naps. I have better bladder control, my headaches are gone.”
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'MLA wants N.S. to fund MS trials'

Postby Cece » Fri May 06, 2011 9:47 am

http://thechronicleherald.ca/NovaScotia/1241940.html
"People ask me, how do I know it works? I tell them, I sleep with proof," he told about 40 people gathered outside Province House.

"She has seen an increase in her energy, she has seen an increase in the quality of her life and she’s certainly much happier now that she’s had the treatment."
Bruce wore a sign that said I Am MS Symptom-Free. Ask Me How. She had her treatment in Albany, N.Y., in November.

"When I left, I had a cane and I was regressing quite fast. And I know that if I didn’t have this done like I did in November, right now I’d probably have a walker."

The 35-year-old said her vision improved immediately and the tightening in her chest went away.
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MS patients hold rallies for 'liberation therapy'

Postby Cece » Sat May 07, 2011 11:38 am

http://www.ctv.ca/CTVNews/Canada/201105 ... es-110505/

"I was almost in a wheel chair," she said. "I was living in my own home but was headed for assisted living."

Baker paid for her therapy on June 2, 2010. Afterwards, she said her symptoms eased to the point where she could look after her 90-year-old mother who had suffered a stroke.

"I became her full-time caregiver," said Baker.

She was also able to travel and even do some rock climbing.

"That was like my inner 12-year-old being set free," she said. "It was just fantastic."

But like half of all MS patients who undergo treatment for CCSVI, the improvements seemed to diminish over time. Now Baker is looking at another round of therapy.
Another MS patient, Jamie Chalmers, is in the same position.

"The first three months, I felt like I was 20 again and six months later it's coming back. The monster is coming back," Chalmers said.
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'The Canadian search for MS miracles in Costa Rica '

Postby Cece » Mon May 09, 2011 7:57 am

http://www.theglobeandmail.com/news/nat ... 976/page2/
“It’s been an amazing experience. I’m not in pain, I’m warm, I haven’t been having any headaches,” said Cara Boutin, a 26-year-old from Lloydminster, Sask., who has had an aggressive form of MS for five years.

Ms. Boutin had the procedure nearly two weeks ago and notes she still has some slurred speech and imperfect mobility. But on her last night in Costa Rica, she felt enough confidence on her feet to paint her toes and wear sandals. “It’s the first hope I’ve had in years and I’m celebrating,” she said.
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'Two operations, poor results, but she is still a believer'

Postby Cece » Mon May 09, 2011 8:06 am

www.theglobeandmail.com/life/health/new ... le2014801/
Ms. Cooper first underwent the procedure in San Diego last October and noticed her MS symptoms, including crushing fatigue, numbness and loss of balance, disappeared almost instantly. But a few months later, she says most of the symptoms returned, leading her to undergo a second treatment in her home state earlier this year.

A few months later, she still hasn't experienced any real improvement.
“I feel like things are worse now postprocedure.”
“I'm like, no matter how much I wanted to have my balance restored, I couldn't possibly have willed this,” Ms. Cooper said, referring to her improvement after her first surgery. “I can't will my balance to be back.”
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'Patients flex muscle in ‘war’ over MS treatment '

Postby Cece » Wed May 11, 2011 10:15 am

www.theglobeandmail.com/life/health/new ... 565/page1/
Ms. Delorme made the trek and says it changed her life. Last July, she underwent the vein-widening procedure at a clinic in Albany, N.Y., and left four hours later with better balance, more energy and less trouble swallowing.

“They came on like a tsunami,” Ms. Delorme recalled, “and they’ve stuck with me, luckily enough.”
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'Success claimed with MS ‘liberation’ treatment'

Postby Cece » Wed May 11, 2011 10:20 am

http://www.bclocalnews.com/vancouver_is ... 68869.html
Last February Lesley Clarke couldn’t walk or talk, but you wouldn’t know it looking at her today.
“I’m lying there getting it done, chatting away, and I started to feel my feet — I could feel my feet for the first time in over a year,” Clarke said.

Because she has a primary progressive MS, a rare aggressive strain with rapid onset, her health declined quickly after her diagnosis in 2009.
“It’s the least invasive thing I’ve had to do (for MS), and the results are instant. It’s given me my life back.”
“When I left, I was walking on my own,” she said. “I almost forgot my walker there.”
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Postby 1eye » Wed May 11, 2011 10:47 am

Went walking yesterday, not a long way, with nordic poles and walker.

This noon-hour, I rode trike for at least 1 hour. Top self-propelled speed was clocked at 17 kph. (pretty sure it wasn't miles, but it wasn't my bike) Went far. Had coffee and donut at Tim's. There was an SUV paralleling me in the next lane, and holding up traffic behind him. I didn't know why he was slowed down. Finally his window opened, and he shouted "great!" and sped on up. It was (is) a beautiful spring day. Lots of fresh air and sun and blood flow.
"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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Postby 1eye » Wed May 11, 2011 1:00 pm

OK, so it was an SUV, not an RV. All those Vs look the same from down there.
"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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1eye
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Postby Cece » Wed May 11, 2011 3:54 pm

Congrats on your improvements, 1eye!!
It's a beautiful spring day here too. Whenever I'm out, I spend half the time lollygagging at the colors. Tulips!! Dandelion fields!! Joggers!!
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Postby 1eye » Thu May 12, 2011 2:36 am

ouch. my legs hurt. but in a good way? did you like my poem? very old, but new. rewrite yesterday. remembered middle, improved it.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
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Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada

Postby Cece » Thu May 12, 2011 7:39 am

Zinamaria said it best yesterday, and I forget exactly what she said, but it was essentially, how did 1eye get so awesome. Totally agree. :)
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'MS sufferers march on Hill'

Postby Cece » Thu May 12, 2011 7:41 am

www.emcottawawest.ca/20110512/news/MS+s ... ch+on+Hill

First the good outcome:
Sharon Taylor, who attended with her husband James and sons Jordan and Nicholas, said she's doing good after having a follow-up ballooning in her left jugular vein due to a blockage.

"I'm doing great - I don't nap, my fatigue is gone, my cognitive function is good, and I use my cane very infrequently," she said.

Then the not good:
[Cooney] underwent the procedure but the benefits were undone as the stents used to hold open her veins became blocked with blood clots - clots that haven't been cleared out due to delays in administering clot-busting drugs commonly prescribed to stroke patients.

"Now it's too late - if it was done early, there'd be no problem," she said, adding that she's been forced to go back on medication and disability.
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