Improvement reports

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

Re: Improvement reports

Postby 1eye » Mon Jun 03, 2013 9:50 am

Seems to me we will not get beyond this stage of occasional great improvements laced with stories of damage, and fix people like Annette Funicello until neurologists admit there is something happening besides placebo (as documented by scientists at home and abroad), standardize the treatment, measure results based on science at baseline and post-procedure, and get on to the business of turning back the CCSVI clock. We are still in the dark ages. :-(
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'MS' is over - if you want it
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Re: Improvement reports

Postby Cece » Mon Jun 03, 2013 10:43 am

1eye wrote:We are still in the dark ages. :-(

We haven't made it far enough, that is for sure. :sad:
We need randomized controlled data, we need funding, we need academic IRs to take an interest in CCSVI, and we need those academic IRs to get experience in how to treat before they launch a trial. We need to temper expectations for what effect CCSVI treatment can have on someone with advanced neurological damage such as Annette had. We need IRs to get interested and investigate this premise, with urgency.
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Re: Improvement reports

Postby 1eye » Mon Jun 03, 2013 8:47 pm

This problem is costing the economies, the health care system, the caregivers, the employers, the insurance entities, governments, families, patients. Very few winners in this game. Some ego-free reason and some dedication can trump a lot of money. I probably learned enough by the age of 14 to understand the problem and its solution. It's just too easy to believe, that if it beat all those people up to today, it must surely be insoluble without spending trillions more.

Don't let the unknown scare you. Keep truckin'.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: Improvement reports

Postby Cece » Thu Aug 01, 2013 4:30 pm

http://www.dailyheraldtribune.com/2013/ ... -long-haul
Kennedy was diagnosed with MS in 2001 and with the support of her new peers, sought CCSVI treatment in California in October 2012.

“My head is clear, I don’t have those pressure headaches anymore,” she said. “It was quite a relief in my life.”
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Re: Improvement reports

Postby Cece » Wed Oct 09, 2013 6:16 am

http://www.esciencecentral.org/journals ... 000110.pdf
After the procedure her concentration and memory improved significantly, the numbness she felt in her arms and hands disappeared and her stamina also improved. Six months later after an episode of left tendonitis in her foot developed, she started having again numbness in her arms. These symptoms resolved in a few weeks. Presently the patient is totally asymptomatic.
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Re: Improvement reports

Postby erinc14 » Wed Oct 09, 2013 7:51 am

last month I had an eye exam and my vision improved so i'm getting new glasses . I had the procedure march 2011. I assume and hope this is the reason .
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Re: Improvement reports

Postby Cece » Wed Oct 09, 2013 7:57 am

erinc14 wrote:last month I had an eye exam and my vision improved so i'm getting new glasses . I had the procedure march 2011. I assume and hope this is the reason .

That's great!!
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Re: Improvement reports

Postby Cece » Sat Oct 12, 2013 7:45 am

http://www.recorder.ca/2013/10/11/healt ... map=%5B%5D
After 12 years battling symptoms of multiple sclerosis, Lyn's Kathy Francis says the shackles have come off.
In her case, Francis has experienced improvements she says are life-changing. Gone is the brain-fog, chronic fatigue, headaches and unsteady balance of the past dozen years.
In its place, she has resumed driving, following a regular exercise routine and rolling on the floor with her grandchildren.
Francis said a change in her energy level, strength and dexterity was almost immediate after receiving the procedure in September 2012.
“I woke up in the hospital and I thought, ‘Oh my God, I've got warm fingers and warm toes.’ They've been cold for 12 years.
“And my skin was pink. Not white or gray like it had been.”
Just days after returning home from hospital, Francis found she could stand on one foot and walking heel-to-toe, backwards and forwards.
“It may not seem like much but if you have not been able to do that for 12 years, it's a big deal.”
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Re: Improvement reports

Postby Cece » Thu Oct 17, 2013 11:05 pm

http://blogs.vancouversun.com/2013/10/1 ... sclerosis/
Winnipeg author/ book publisher Ingeborg Boyens went to New York to have the angioplasty in 2011 after her imaging tests suggested she might benefit from the procedure. While she’s distraught by the fact she had only temporary relief of a few symptoms, she, too, wonders if a placebo effect can play that much of a role in healing.
Although I won’t claim the (angioplasty) I had was a dramatic success, my feet — always blue and cold — were suddenly pink, and my speech — normally slurred — was miraculously clear. Please don’t tell me it was the placebo effect at play. If my mind was directing the reaction, surely I would have got what I wanted (which was) the ability to walk gracefully.
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Re: Improvement reports

Postby Cece » Thu Oct 17, 2013 11:10 pm

http://www.stalbertgazette.com/article/ ... y-advocate
“You could feel the catheter going around your ears and you feel like your ears are going to blow. (It was) so awful,” she remarked.

“But it was night and day after. My husband said he thought he got his wife back.”

Beaudette said her feet were immediately warm again and she had regained her balance. But the after-effects of the second procedure weren’t as prominent.

“My husband Ron feels the results were way better the first time so we want to go back to Mexico,” she said, acknowledging that the treatment is not a cure, but for her it has slowed down the progression of the disease.
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Re: Improvement reports

Postby Cece » Thu Oct 17, 2013 11:12 pm

http://www.simcoe.com/news-story/415040 ... -the-ride/
But Harrison cannot deny that his symptoms were alleviated by the procedure.

He is more steady on his feet, his hands and feet are warm, he speaks slowly but clearly and has perfect vision.
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Wolfville couple adamant Liberation treatment offers hope

Postby Cece » Wed Dec 11, 2013 6:20 am

http://www.kingscountynews.ca/Living/20 ... ers-hope/1
The travel costs and procedure at a private clinic cost $10,000, but Alkenbrack felt positive effects immediately after the 30-minute procedure. The next morning, he was able to walk without a cane. Mallin felt like she’d regained her husband.

His roommate, Steve, a man from Scotland, suffered from primary, progressive MS. Less than an hour after his surgery, his once claw-like hand seized Alkenbrack’s in a firm handshake. Steve was walking again.
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Re: Improvement reports

Postby Cece » Wed Dec 18, 2013 2:38 pm

https://www.facebook.com/photo.php?fbid ... 766&type=1

I usually post patients' quotes from newspapers as source material in this thread, but I ran across this today and it made me happy. It's from a presentation by Dr. McGuckin of the Philadelphia Vascular Institute presentation to the Canadian MP's last year.

“The Call” and The Hippocratic Oath
Can you open the blocked vein in my neck?

• The first patient- “can you open the blocked vein in my neck?” “I think I can open your blocked vein, but I don’t know what it will do to your MS symptoms.” I was naïve.
• An amazing experience- five wheelchair bound patients getting out of the chair and walking in our office in one week
• The artist who could only see a circle on the wall – the circle that became a clock with numbers and minute hash marks between the numbers while still on the procedure table.
• The doctor speaks and nystagmus ceases. After three years of silence the physician-patient with MS said his three children’s names and sang Happy Birthday to his wife. His 10 years of constantly roving brainstem controlled eye movement stopped post-procedure and his eyes are now steady and controlled.
• Having a patient discharged from a nursing home and going home again – a joy to any caregiver.
• A patient on the table saying – “I see colors again.” “The pain in my head is gone.”
• These treated deformities include malformed valves, significant narrowing, and membranous tissue or webbing inside the vein.
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Re: Improvement reports

Postby Cece » Thu Jul 31, 2014 7:08 pm

http://www.theobserver.ca/2014/07/31/mu ... y-man-says
"I was saying before 'if death was a 10, I feel like a nine,'" said the 35-year-old.
Now, he said, "I feel probably a five."

The blurriness in his vision isn't gone, but is better, he said. Ditto for tingling, and he's noticed a marked improvement in his energy.

"When I came home I cleaned out the garage, cleaned out the pool, cleaned out my truck, did all this stuff I haven't done in three years," he said.
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Re: Improvement reports

Postby Cece » Wed Aug 06, 2014 3:41 pm

http://www.theobserver.ca/2014/08/06/sa ... helped-him
Chris Trepanier paid about $10,000 to have angioplasty in Pittsburgh to treat chronic cerebro spinal venous insufficiency (CCSVI) almost four years ago and said recently he's still doing well.

The controversial treatment, not currently available in Canada, helped, with chronic fatigue and headaches, vertigo, pain in his left hip, and limited sensation in his legs, said Trepanier.

"The scariest part was getting out of bed in the morning, swinging your legs over the bed and not knowing if you're going to be able to stand up," said the 46-year-old Sarnia man.

"That's gone. I get up and go now."
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