Improvement reports

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

'MS patients seek controversial treatment'

Postby Cece » Wed Jul 27, 2011 7:41 am

http://abclocal.go.com/wpvi/story?secti ... id=8261767
#1 -
At the time she says she was using a walker and scooter. Afterward -

"My balance improved, my coordination improved. I was able to squat down and stand up again," she says.

#2-
"I noticed it yes on the way back to the train," Sam says. "I noticed more mobility, more agility. He seemed more alive."

Sam also says he feels more energetic, and has more mobility in his hands.

A simple task like tying his sneakers, which was a big challenge before the procedure, was much easier afterward.

"I feel like it has made a difference in my life," says Sam.
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Postby 1eye » Thu Jul 28, 2011 6:23 am

A year and a half ago I went to a Christmas party wearing my favorite party shirt, which had short sleeves. When I got home I was embarrassed to see all of my bruises in a mirror. It looked like I had been being abused. It was because of my regular falls. If I fell outside, which even use of the walker could not prevent, I ended up bloody. I guess I had delayed the use of the wheelchair too long. By the new year I was in it full-time. In my defense there wasn't much room for either conveyance, as we were undertaking a house renovation.

I had my procedure in August last year. I haven't fallen more than a handful of times since, hardly at all anymore, and though I still use the walker, I am now a member of a gym, and still moving towards walking.

If anybody has been wondering why I stopped updating my tricycle saga, 3 reasons:

1. the chainwheel fell off while I was on an uphill slope. The trike rolled backwards. Before I knew it, I had rolled off the edge of the path into a ravine. At the bottom my machine and I parted, I took a couple of gashes from the brake disks, and landed head-first on a municipal drain thing. The helmet saved my head and the bushes did the rest. I haven't been on it much since.

2. another excuse is the heat we've been having. Indoors it's air-conditioned. But the weather has turned and I have nothing stopping me now. As soon as I get off the antibiotics for my leg gashes, I'll be clipped on again.

3. I joined a gym, and have been going there instead of my usual stuff.

Peripheral to that, Triana (kinestheologista) drove over, put her bike on top of her car, and when she got home it was gone. No reports of people killed or injured by flying bikes, but no bike found.
"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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Location: Kanata, Ontario, Canada

Postby Cece » Sun Aug 07, 2011 7:40 pm

A gym seems like such a safe indoors place to be....
But I am sure it is more fun to be out on the trike.

Yikes on the forecast for flying bikes.

Keep us updated 1eye, it is good to hear from you. I imagine your wife worries when you end up with leg gashes?!
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'Grande Prairie Woman A Fan Of CCSVI Treatment '

Postby Cece » Tue Aug 09, 2011 12:37 pm

http://tinyurl.com/3mx8stj
Since then, she says her headaches are gone, she is not as fatigued as she was before, and she can shower and stand up to get herself ready by herself.
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'My liberation surgery'

Postby Cece » Tue Aug 09, 2011 12:41 pm

www.winnipegfreepress.com/breakingnews/ ... 64793.html
The next morning while eating breakfast in the hotel room, I looked down and found my normally blue-purple feet were pink.
Indeed, during the next few weeks I would see more changes in my symptoms. These changes happened so gradually and incrementally that I barely noticed. It took friends to remark that my speech was clearer; how sweet that they never told me before just how slurred my voice had been.

The pain that made nights intolerable eased; I halved my pain meds and gave up on the hot bag that had been my night-time ritual for years. On the day I hauled my grocery shopping up the stairs, I thopught, "Hmmm. My fatigue is better." And the cognition fog that usually blanketed my awareness lifted enough that my normally skeptical husband commented that I was "funnier" since my procedure.

But by the second-month anniversary of my "liberation," I had still not had the dance with my stepmother that I had promised her. Heading into that third month, things began to slide.

The chronic body pain came back, spreading like a stain from fingertip to toe. I gave up my stubbornness and embraced my pain meds. My feet were back to their familiar violent purple hue.

I can only assume my veins had restenosed or closed in on themselves again. So it seems I spent more than $10,000 to get pinker feet for two months.
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'Multiple Sclerosis patients look for support'

Postby Cece » Tue Aug 09, 2011 12:45 pm

www.cochraneeagle.com/2011/08/multiple- ... r-support/
Overall, Hegland said it cost her more than $12,000 to travel to Poland for CCSVI treatment but it was worth it.

“It was like a fog being lifted,” she said.
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'Sussex woman finds relief in controversial procedure'

Postby Cece » Tue Aug 09, 2011 2:34 pm

http://telegraphjournal.canadaeast.com/ ... le/1429738
Prior to the June 21 liberation therapy, Gallagher was not able to walk unaided.
She said she regained her sense of balance after the treatment and was able to walk unaided right away. Her fatigue, another common symptom of the disease, continues to lessen.

"And another biggie was the vertigo disappeared," she said. "I used to always feel like I was moving and I don't have that sensation anymore. And my bowel and bladder control are a lot better."
A YouTube video by Lisa Gallagher shows the Sussex woman doing a happy dance. Something she couldn't do just a short while ago.

"And look," she says. "I can squat. I can get myself up. I can sit."
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Local liberation patient gives thumbs-up to study

Postby Cece » Tue Aug 09, 2011 2:46 pm

www.stalbertgazette.com/article/2011073 ... p-to-study
“It’s not a big deal. If my husband had a problem with his heart, they would do angioplasty. Just because it’s MS, [they are hesitant]. It wasn’t life threatening. And I saw improvement immediately,” she said.
Since undergoing her treatment nearly a year ago, Beaudette said she has noticed some marked differences.

“Now my balance is great — I can shower and I don’t feel like I’m going to fall,” she said, noting that she fell last May, breaking a bone in her arm in three places and requiring a titanium plate and three screws.
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Langford family fights to save grandmother with MS

Postby Cece » Sun Aug 14, 2011 6:54 pm

www.bclocalnews.com/vancouver_island_so ... 55853.html
Earlier this year, Langford resident Lesley Clarke fundraised $10,000 to receive the liberation procedure from a clinic in Seattle. She left in a wheelchair and came back walking and full of energy.
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Re: 'MS under observation'

Postby Cece » Tue Aug 16, 2011 8:19 am

Cece wrote:www.ganderbeacon.ca/News/2011-04-27/article-2459290/MS-under-observation/1
“Last year this time, I was 32 pounds heavier. I couldn’t walk 60 metres unassisted, without my cane. No clarity of thought. No energy. I wanted to sleep all the time. It was terrible.”

Since his liberation treatment last summer, Mr. Duffy said he feels like a new man.

“Now I don’t ever use the cane, and the muscles that had atrophied have grown back. My energy levels are better than they have been in 20 years, so for me it’s really something.”

http://tinyurl.com/4yxj6rk
A new article featuring a patient already reported in here:
Duffy, who was diagnosed with MS almost 20 years ago, said the procedure is painful, but only for a few seconds. He was kept immobile for 12 hours to reduce bleeding, and was discharged the following day.

“The next day, everything was clearer visually, I had more energy, and I was not as tired as I used to be.”

He still has periodic sensory deficits, but feels closer to being the person he was prior to being diagnosed with MS. Duffy no longer takes any medication.

“I can say that I have a new husband,” said Sherry Duffy. “He’s not falling asleep on the couch at 6 p.m. every evening. He has more energy than I do most days .... It’s pretty rough when a lot of household things that should be for couples were my responsibility, but now he’s back.”
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'Now Vickie's giving back'

Postby Cece » Tue Aug 16, 2011 9:04 pm

www.stthomastimesjournal.com/ArticleDis ... ?e=3260258
"I feel good, I feel really good. I don't have fatigue, I can withstand the heat here now."
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'Brothers raise funds for MS'

Postby Cece » Sat Aug 20, 2011 10:50 pm

www.bclocalnews.com/okanagan_similkamee ... 38233.html
The boys raised over $2,700, and their mom went to have treatment in Bulgaria in December, 2010. She is doing much better, and believes she would be in a wheelchair had she not had the treatment.

Now she plays soccer with her sons, and even put in a garden that all three of them enjoy together.
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'Edmonton group lobbies faster treatment trials'

Postby Cece » Sat Aug 20, 2011 10:52 pm

www.vancouversun.com/news/Edmonton+grou ... story.html
Krysteen Fitzgerald, a 29-year-old police officer from the Edmonton area, said she is almost completely back to normal after receiving the treatment. Fitzgerald was partially paralyzed on the right side of her body and was unable to work full-time.

Fitzgerald says she now no longer walks with a limp.

“I went back to running and working,” she said.
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'City MS patients begrudgingly cheer provincial study'

Postby Cece » Sat Aug 20, 2011 10:56 pm

www.fortsaskatchewanrecord.com/ArticleD ... ?e=3263636
After the procedure, Rosa had immediate feeling back in her hands.

"I was rubbing my fingertips together. The nurse asked me it anything was wrong, and I told her 'it depends on what you mean by wrong, because I feel them'" Rosa said.
Before receiving the treatment, Rosa and Pilgrim were both diagnosed secondary progressive.

"It's really humiliating to have someone wash you and dress you because you can't do it yourself," Pilgrim said.

Pilgrim travelled to Costa Rica in October. Prior to receiving treatment, Pilgrim's doctor took her driver's license, due to her state. Pilgrim got her license back in March, 2011. The treatment improved her driving skills, she said.

"I am now totally fit and able to drive," she said proudly. "I'd do it again in a heartbeat."
"[Another MS patient who received treatment] can cut his meat now. So can I. He can tie his shoes, so can I. He can shower while standing up. So can I," Rosa said, while talking about the benefits of this treatment. "It's what I can do [now] and what I don't have to do anymore." Rosa said.
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New study warns ERs will become clogged with MS patients wh

Postby Cece » Wed Aug 24, 2011 8:12 pm

http://tinyurl.com/3hd9zv8
Stefanuk will admit CCSVI isn't perfect. He says his sister had the treatment and he would too.

"My sister is 100 per cent better."
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