Improvement reports

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

Re: Improvement reports

Postby Cece » Thu Sep 18, 2014 9:55 am

http://www.cowichannewsleader.com/news/272068861.html
That was the case for Darwin, who said the 2010 surgery stopped the progression of the disease for two years.

“After the surgery, there was a 180-degree turnaround,” Darwin said. “Before, I had tremendous fatigue, I used to be exhausted at 11:30 a.m., after the surgery, it meant I could go all day.”

Other symptoms, beyond exhaustion and fatigue included what he called “brain fog” and heat intolerance.

“I can’t go outside for more than 10 minutes in 30-degree temperatures,” he said, which meant he spent a good deal of this beautiful summer inside.

During the past couple years, the symptoms have been creeping back; he says he’s now in the same shape that he was in before he went to India.

Adding to that, for the past eight months, he has experienced electric shocks up and down his arm which he thinks is nerve pain.
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Postby THX1138 » Thu Sep 18, 2014 11:04 am

Cece wrote:
Cece wrote:“My fatigue level has gone way down, and my energy level has gone way up,” he said. “My balance is definitely improved and I have a clear head — the brain fog seems to be gone. Colours seem to be brighter, objects seem to be sharper.”
http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic16157.html

That is exactly what happens when I have a strong niacin flush or a magnesium IV. My balance gets way way better though.
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Re: Improvement reports

Postby Cece » Mon Nov 10, 2014 11:52 am

http://www.rense.com/general88/MScure.htm
Augusto Zeppi, a 40-year-old resident of the northern Italian city of Ferrara, was one of those patients. Diagnosed with MS nine years ago, he suffered severe attacks every four months that lasted weeks at a time ­ leaving him unable to use his arms and legs and with debilitating fatigue. "Everything I was dreaming for my future adult life, it was game over," he said.
After the procedures, Mr. Zeppi said he was reborn. "I don't remember what it's like to have MS," he said. "It gave me a second life."
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Re: Improvement reports

Postby Cece » Fri Feb 27, 2015 9:35 am

http://montrealgazette.com/news/local-n ... are-system
When it comes to your health, you will try everything in your power, I don’t regret trying and I would do it again tomorrow. — Élise B., multiple sclerosis patient
B. initially believed her treatment had worked. For three months, she found she was walking without having to hold on to something for support. But then her progress stopped and began to dwindle, and she soon found she had lost whatever benefits she had gained.
She believes she was too far advanced for a successful outcome and, while she wouldn’t change what she did and still has faith in the CCSVI treatment, she does believe it was a high a price to pay for just three months of improvement.

Her explanation for the lost improvements was that she was too far advanced, but then why would there have been initial improvements? It sounds like a possible case of underdilatation.
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Re: Improvement reports

Postby Cece » Sat Mar 28, 2015 5:32 pm

http://www.mustangpaper.com/contentitem ... to-recover
“After the angioplasty we noticed immediate improvements,” Tammy Williams said. “He started to get color back in his face, his vision started to become more vivid and he started to have thoughts race through his head again. His vision improved so much he said it was like somebody colored the sky with markers.”
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Re: Improvement reports

Postby Cece » Fri Jun 24, 2016 11:15 pm

http://www.advertisernewssouth.com/arti ... ileArticle

“In 2014, I had the $15,000 out-of-pocket CCSVI treatment procedure in Ohio. Some people have had success with it. Unfortunately, it wasn’t the answer for me,” Anderson said.
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Re: Improvement reports

Postby 1eye » Sun Jun 26, 2016 8:50 pm

Thank you, Cece, for all your intrepid news watching. We are all better for it. I would say, without a formal count, that the positive outcomes far outweigh even the no-result outcomes. Of course, good news is always better. I don't think this is meant to be scientific or anything, but it's good that people can still have some hope. Many people who have been treated will tell you it is real hope, well worth the cost after decades of zero hope, and even possible worsening or death from big pharma's contributions. Thanks again and again. :-D 8) :peace: :geek: :smile: :-D :YMHUG: :) :-BD :thumbup: :AR!
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'MS' is over - if you want it
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Re: Improvement reports

Postby Cece » Sun Jun 26, 2016 9:54 pm

Thank you, 1eye. Yeah, it can't really be considered scientific; people who were interviewed for articles may have been selected to be interviewed because of their positive outcome. I noticed back in 2011 or whenever this thread started that some articles were no longer available on the internet after a period of time had passed. I like that they're preserved here. I would find this thread motivational if I was considering whether to have the procedure, because of the repetition of improvements being reported by real people, one after another.

And I think that last emoticon was made for you. :AR!
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Re: Improvement reports

Postby Cece » Sun Jun 26, 2016 10:02 pm

http://www.estevanmercury.ca/news/regio ... -1.1451061

"Every day is exciting again" for Estevan woman after undergoing CCSVI procedure

The first thing she noticed was the sensation in her legs. Oddly enough, it felt like there was hot water running down them.But, it had been years since she felt anything in her legs. The family joke was it didn't matter if you stepped on mom's toe, she couldn't feel it anyways. Yet here she was, lying on a hospital bed in Mexico and her feet were no longer the blocks of ice she had become accustomed to, they were actually warm.
When we came back we stopped in Calgary overnight. After being on the plane all day I just had to have a bath. I got into the tub and I got out of the tub. When I realized what I had done, I just started bawling because I never could have done that before.
I was putting lotion on my legs and I thought I can feel my legs. I haven't had feeling in my legs for years. Then I could start feeling my fingertips.
"It's like she's alive again," said Bob. "She sat before like a zombie.""It's like we all say, we've got our life back," Beth added.
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Re: Improvement reports

Postby 1eye » Tue Jun 28, 2016 9:28 pm

Last year I complained a lot about heat problems. It is a great improvement to be able to stand a bath. Last one I had was 2008 or 2009. Can't get up from them.

But I have been able to stand heat better on biotin. Maybe I'll try another bath.
"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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Re: Improvement reports

Postby 1eye » Tue Jul 26, 2016 7:50 am

I have been posting my mileage on my thread about my electric tricycle in the "general" topic, but since that post about stents gone wrong from someone who doesn't even have MS, I thought I would bump this one. We need some cheerleading, so to speak...

The day before yesterday I went 25 km on the Trans-Canada Trail. The part between Stittsville and Carleton Place is swampy, like most of this area, but there were a lot of Sunday walkers and riders because it's an old rail-bed. That means the grades are all shallow, so I didn't use my motor much. Met a guy who also has MS, who was walking a LabriDoodle. He uses a delta tricycle, but when he saw me use the throttle, he said, "Hey, that's cheating!" :-D The dog was very muddy, because he likes to cool off, even in swamps.

I'm increasing my distance.
"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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Re: Improvement reports

Postby Cece » Tue Oct 25, 2016 7:44 am

http://www.cbc.ca/news/canada/ottawa/di ... -1.3809026

Despite research suggesting CCSVI doesn't play a role in MS, D'Eon said she feels ongoing benefits from the treatment

"We were so … maligned as patients. We were called 'crazy,' we were a member of a 'cult,'" D'Eon told CBC News.

"So to go to a doctor that has said that, and to say, 'Yeah, I've had the procedure,' and be dismissed like what I've experienced doesn't count, I didn't feel like being demeaned in that way. So … I didn't tell my doctors."
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Re: Improvement reports

Postby Cece » Tue Oct 25, 2016 7:46 am

http://www.cbc.ca/news/canada/ottawa/di ... -1.3809026

The 62-year-old Ottawa woman went to New York for liberation therapy in 2010, and said she's had lasting benefits to her eyesight.
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Re: Improvement reports

Postby Rosegirl » Wed Oct 26, 2016 5:17 am

I also had major improvements in that immediately after the procedure, I could read very small print. This has continued for years.

My ophthalmologist said that these kinds of changes are common. The procedure changed the fluid pressure within the skull. When it normalized, the eyeball was no longer deformed, hence the improvement in vision.
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Re: Improvement reports

Postby Cece » Mon Jan 02, 2017 7:16 pm

http://www.ocregister.com/articles/vica ... mahon.html

Her attorney, Marshall Silberberg, said in opening statements at Central Justice Center that Vicary was desperate to improve her symptoms, which included difficulty with balance, swallowing, speech and strength.

Instead, he said, she experienced a stroke that left her unable to walk or care for herself.
“Linda Vicary can’t use her walker, cannot dress herself, has to be catheterized. She needs to be fed. She still has MS,” Silberberg told jurors.


I pull these improvement reports from news articles, so that despite being anecdotal, they are from real people who were interviewed. I try to include every report, whether negative or positive in outcome. This one is clearly negative.
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