Improvement reports

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

Re: Improvement reports

Postby Cece » Sat Jan 07, 2017 1:53 pm

http://www.recorder.ca/2017/01/04/romancing-the-stone
She loves the challenge of the sport [curling], using a special push stick to help her direct the stones down the ice and ease her back pain.

It's pain that makes Francis' love of curling all the sweeter for herself and anyone who knows her. About five years ago around this time her multiple sclerosis had her in a hospital bed "paralyzed," she said. She found relief from her pain through a liberation treatment where balloon angioplasty is put in the veins to open them up.

Without that treatment she knows full well she wouldn't be curling right now. "I don't take anything for granted," Francis said.
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Re: Improvement reports

Postby ThisIsMA » Sat Jan 07, 2017 8:19 pm

Hi Cece, that article was a great find!

Here is another article about the same woman. It was published in 2013, a year after she had the CCSVI procedure. Its really neat to see a recent article (the one you linked to in your post above) about someone who's still doing well 4 years after the angioplasty procedure.

The article I found is titled "HEALTH: Unfunded treatment for MS works wonders for Lyn woman". I don't know if its been posted here in the past, but I thought it offers great backstory for the more recent article you posted a link to.

Here's the link to the article I found:

http://www.recorder.ca/2013/10/11/health-unfunded-treatment-for-ms-works-wonders-for-lyn-woman

M.A.
DX 6-09 RRMS, now SPMS
Still work, still walk, but not very far.
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Re: Improvement reports

Postby Cece » Sun Jan 08, 2017 6:14 pm

Thanks for posting that! It is really good to see such a positive update four years out. Here are some improvements mentioned in the original. It may well be in this thread already.
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 » Mon Feb 27, 2017 10:12 am

http://www.ksl.com/?nid=148&sid=43035236

“I remember very clearly as soon as the procedure was done it was like the lights came on back on,” he recalled. “It is not a cure, you know, make that clear, but it was very dramatic in terms of what it did in terms of my cognitive awareness, my fatigue, was quite a bit better.”
“One of the things I love being an artist is that, you know….you don’t run away from life. You don’t run away from the dark stuff," he said. "That’s what’s interesting about life. That’s what’s interesting about being a human, you know, is confronting the scary stuff, you know, and that’s where we grow.”

Okay, I try to pick out specifically the CCSVI improvement quotes from articles, but that second quote snuck in there because it's good stuff. This is from Jeff Beal.
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Re: Improvement reports

Postby Cece » Wed Mar 08, 2017 3:38 pm

http://www.ctvnews.ca/health/meniere-s- ... -1.3312503
One of those patients was Roberto Percuoco. He tells CTVNews.ca that before the PTA angioplasty, he had numerous vertigo episodes and often felt in a “brain fog” during which he had trouble with his memory and comprehension and frequently become easily fatigued.

After the treatment, he no longer has intense pressure in his ears, while his vertigo attacks have become less severe. Although he sometimes still feels periods of dizziness, Percuoco says he is able to travel and perform better at work.

“I feel more confident. My mind is more clear and able to stay focused on topics,” he told CTVNews.ca mby email from Italy.
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Re: Improvement reports

Postby Cece » Wed Mar 08, 2017 3:39 pm

http://www.ctvnews.ca/health/meniere-s- ... -1.3312503
She underwent angioplasty in 2012 and again in 2015 and found the headaches disappeared. The frequency and severity of her vertigo was also reduced and while she still can’t work, she says her quality of life has improved.

“The second treatment led to many improvements, great improvements,” she said by phone.

And while Gaggioli says the neck vein procedure was not a cure, she feels much better.

“My mind is more clear (whereas) before there was a psychological and physical heaviness” she said.
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Re: Improvement reports

Postby Cece » Sun Nov 19, 2017 8:54 am

http://www.ctvnews.ca/health/jama-neuro ... -1.3684387
That research that could potentially explain cases like Tammy Lynn Tremblay. She was diagnosed with MS in 2006, and began losing strength, balance and vision.

"I would end up in a wheelchair. It was scary -- very scary," she said.

When drugs didn't stop her decline, the Ottawa scientist researched Zamboni's theory and went to Poland in 2010 for angioplasty, to open up blocked veins.

"The great thing is that I have never had any other MS episodes since and this was 2010. So, after seven years, if this is a placebo effect, it's a pretty good one."
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Re: Improvement reports

Postby ThisIsMA » Sun Dec 31, 2017 5:07 pm

Hi Cece,

Also there is this quote from the article you provided a link to above:

Dr. Maria Grazia Piscalgia, a neurologist in Ravenna, Italy, referred 28 of the 115 patients to the Brave Dreams study.
She told CTV News that eight of those patients received placebo angioplasty, while 20 were given the balloon angioplasty.
Of those 20 who received the treatment, 18 showed improvements in symptoms and fewer lesions on MRI scans for one year.
However, the data, when combined with all the other patients studied, showed no overall benefit.


What I want to know is if they did a separate analysis of improvements for the 53% of participants who achieved increased blood flow?
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Re: Improvement reports

Postby NHE » Mon Jan 01, 2018 2:46 am

ThisIsMA wrote:What I want to know is if they did a separate analysis of improvements for the 53% of participants who achieved increased blood flow?

If not, it seems to be a flaw in the design of the study. A good analogy might be something like this... Suppose you were tasked with determining the mileage of a car by using the average of a fleet of 20 identical cars to be tested. Now, suppose that half of the cars had properly inflated tires and the other half had grossly under inflated tires say around 5 psi. Would it be correct to include the low mileage from the cars with the flat tires? No. No company would do this. But that's just what happened when the data from the people with the successful angioplasties were mashed together with the other half of the data set with unsuccessful angioplasties. Moreover, the study was grossly under powered statistically due to very low recruitment into the trial. If n is too low, a small treatment effect is unlikely to be significantly different. I suspect that if this had been a drug study by a pharma company that the results never would have seen the light of day.
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Re: Improvement reports

Postby Cece » Sat Jan 06, 2018 6:46 pm

ThisIsMA wrote:What I want to know is if they did a separate analysis of improvements for the 53% of participants who achieved increased blood flow?

I believe they did not. They looked at the whole group as "treated" whether or not the blood flow improved.
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Re: Improvement reports

Postby Cece » Sat May 12, 2018 6:12 pm

https://www.ctvnews.ca/health/meniere-s ... -1.3312503
Meniere's disease
He tells CTVNews.ca that before the PTA angioplasty, he had numerous vertigo episodes and often felt in a “brain fog” during which he had trouble with his memory and comprehension and frequently become easily fatigued.

After the treatment, he no longer has intense pressure in his ears, while his vertigo attacks have become less severe. Although he sometimes still feels periods of dizziness, Percuoco says he is able to travel and perform better at work.

“I feel more confident. My mind is more clear and able to stay focused on topics,” he told CTVNews.ca mby email from Italy.
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Re: Improvement reports

Postby Cece » Sat May 12, 2018 6:23 pm

https://www.ctvnews.ca/health/ms-patien ... -1.3772510
“We’ve got this tension between science and social media, where people will put these compelling stories, saying, ‘I’ve had this treatment, and I feel dramatically better,’ ” said study co-leader Anthony Traboulsee, a neurologist who directs the MS clinic at the University of British Columbia. “I hope these findings from a carefully controlled ‘gold standard’ study will persuade people with MS not to pursue liberation therapy, which is an invasive procedure that carries the risk of complications, as well as significant financial cost.”

Well, I've had this treatment and I feel dramatically better.
But it seems wise to include Dr. Traboulsee's advice in this long thread of reports that, however compelling, are mostly anecdotal.
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Re: Improvement reports

Postby NHE » Sun May 13, 2018 1:35 am

Cece wrote: https://www.ctvnews.ca/health/ms-patien ... -1.3772510
“We’ve got this tension between science and social media, where people will put these compelling stories, saying, ‘I’ve had this treatment, and I feel dramatically better,’ ” said study co-leader Anthony Traboulsee, a neurologist who directs the MS clinic at the University of British Columbia. “I hope these findings from a carefully controlled ‘gold standard’ study will persuade people with MS not to pursue liberation therapy, which is an invasive procedure that carries the risk of complications, as well as significant financial cost.”

The same could be said for several MS treatments, e.g., Tysabri for one. 8O
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Re: Improvement reports

Postby Cece » Wed May 16, 2018 7:40 pm

NHE wrote:
Cece wrote: https://www.ctvnews.ca/health/ms-patien ... -1.3772510
“I hope these findings from a carefully controlled ‘gold standard’ study will persuade people with MS not to pursue liberation therapy, which is an invasive procedure that carries the risk of complications, as well as significant financial cost.”

The same could be said for several MS treatments, e.g., Tysabri for one. 8O

Ahhh but the conventional MS treatments are proven treatments, even if it's hard to trust studies done by companies that will benefit financially from the studies.

CCSVI treatment is unproven (although angioplasty itself is thoroughly proven).

That it's an invasive procedure as opposed to a drug is also a difference, but I would weigh those fairly equally as drugs have side effects and the invasive procedure is one day only, go home that night, take an anticoagulant for a set number of weeks, and done, as opposed to taking the drug for the rest of your life. And of course most people do both, the procedure and the conventional drugs, if they choose to get the procedure.

I'm just rambling. Hope everyone is well.
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