MS病友彼此分享著自己CCSVI的經驗和故事

原文請見: MS patients share 'liberation' stories
國外的病友已經透過網路彼此分享自己參與CCSVI的經驗和故事,以及看法,
我想國內的病友也可以盡量的分享.
希望能夠有病友願意分享彼此的CCSVI經驗和故事更能夠讓大家了解.

最近放空自己, 沒想到 在youtube上 充滿了好多國外的病友CCSVI的分享影片

大家可以直接點選就可以看到一堆了.

會在慢慢的依序貼上來, 等不及的人可以直接去youtube上好好的看!!

引述: The StarPhoenix

When the doctor told Michelle Walsh her jugular vein was severely narrowed, restricting the blood draining from her brain, she cried.

But they were tears of joy.

"When have you ever wished to have bad news?" she said on the phone from her farm near Beechy, recounting her trip to Bulgaria in mid-July to receive the "liberation treatment" -- where tiny balloons were inserted into some of her veins, inflated, then withdrawn. Proponents of the treatment say multiple sclerosis is related to restricted bloodflow from the brain caused by narrowed or blocked veins (stenosis).

"But when he confirmed I had stenosis with the ultrasound that morning, I cried. You fly halfway across the world -- of course, you don't want to hear you don't have it," said Walsh, 37. "But for them to say, 'Yes, you have severe stenosis,' at least there was something you could treat."

Walsh said as soon as the Bulgarian doctor inflated the balloon in her left jugular vein she could feel the blood flowing, like a tap turning on. Her right jugular and azygos (the major vein in the spine) veins were similarly "opened up." Sensation returned on her right side; she could feel warmth in her hands and feet. She didn't know she had vision problems, but things were immediately brighter post-op: "I can see through HD TV eyeballs right now," Walsh said.

Walsh said she continues to notice improvements day by day. She can brush her teeth with her right hand now, something she hadn't been able to do for years. Walsh's husband noticed her opening a water bottle with no effort the other day -- something healthy people take for granted.

"I can feel when my kids kiss my cheek now," said Walsh, her voice breaking for a moment. "I'm sorry. That was a pretty cool moment."

MULTIPLE WARNINGS

Some of the stories patients bring back sound like impossible claims -- skeptics say patients are imagining their improvement, feeling only the placebo effect. Critics such as Ontario researcher Dr. David Spence have told The StarPhoenix that doctors offering the unproven treatment to desperate patients are "unscrupulous charlatans."

The Canadian Institute of Health Researchers convened a special meeting on MS research Aug. 26 and announced five days later that clinical trials on the liberation procedure are premature because of the "overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS." Canada's Health Minister Leona Agulkkaq accepted their recommendation, announcing the federal government would not be funding pan-Canadian trials on the procedure.

Alberta Health Services issued an information sheet on Aug. 6 advising residents to be wary of pursuing the treatment, arguing anecdotal reports can't be trusted.

A leading MS researcher in Saskatoon, Dr. Katherine Knox, said she advises her patients not to get their veins scanned, nor to seek the liberation treatment.

"We have no idea whether or not the treatment is really going to help the disease in the long run. And there could be significant health risks in going abroad and seeking health care from an unknown source," she said.

"If I had MS, I'm not sure I'd be going."

Multiple sclerosis is considered a neurological disease of unknown cause, where immune cells wrongly attack nerve fibres in the brain and spinal cord, resulting in chronic, increasingly debilitating conditions such as blindness and paralysis. It's the leading cause of neurological disability in young people. Canada has among the highest rates of MS in the world and Saskatchewan the highest rate among the provinces, with an estimated 3,500 residents with MS.

Theories linking MS to vascular issues can be traced back more than a century, but they were largely ignored until Dr. Paolo Zamboni, an Italian vascular surgeon, published results last year of the liberation treatment. He studied the veins of MS patients and found most of them to have chronic cerebrospinal venous insufficiency (CCSVI), the term he coined to describe narrowed or blocked veins in the neck. Zamboni found that opening the veins alleviated symptoms of MS. In the months since, clinics in many countries have started offering the treatment at a cost of around $10,000.

Clinical trials are moving forward in a number of countries, including the U.S., but not here at home. Premier Brad Wall, however, is determined for Saskatchewan to take the lead and has pledged funds for clinical trials, calling for them to start as soon as possible.

Researchers say sensational media reports of patients' stories should be taken with a grain of salt. The StarPhoenix spoke with eight Saskatchewan residents -- out of at least 25 -- who have undergone the liberation procedure this spring and summer in four countries: Poland, Bulgaria, the U.S. and Mexico. Each one reported improved health, to varying degrees.

Here are some of their stories.

Lyle Vindeg, age 63, Saskatoon

MS diagnosis: Secondary progressive

Liberation treatment: July 13, Bulgaria

What was your experience with the procedure?

I had 30 per cent blockage in the left (jugular), so they didn't do that, because it has to be, I think, 50 per cent before they do it. They went to the right (jugular) and there was 80 per cent blockage there and then they went to the azygos (vein). That was 80 per cent blocked. That was the biggest culprit as far as I'm concerned. They cleaned that one out and that one controls a good portion of your walking, I think, and your bladder. My bladder never worked that great, but that's improved fantastically since that happened. . . .

Plus, I've got feeling in my hands now. My eyesight is better, because I can turn my head way better now, too. Just all the little improvements have been big: Like my toenails were white before, now they're starting to turn pink. The blood is getting down there. There's been lots of little improvements that everyone takes for granted, but they're big improvements for me. . . .

Like Kleenex, I couldn't feel Kleenex. If I wanted to blow my nose, I had to reach for the box and make sure I had a hold of it. I couldn't just swipe and assume I had it. I had to look to make sure. But now I can take a swipe and I know I've got it because I can feel it.

What would you say to those who say it's all the placebo effect, that your improvements are all in your head?

I would say it's all in their heads (laughs). I don't care what they want to call it. They haven't had the operation, so they don't have a clue. . . .

When I was there, a couple of guys went in (for the procedure), they had trouble seeing beforehand. They came out of that operation and the one guy couldn't see worth a damn. He thought nothing happened. We told him, "Take your glasses off." He took his glasses off and he said, "Wow. I can see." You can't dream that up.

Watson McGregor, age 53, Rosetown

MS diagnosis: Primary progressive

Liberation treatment: June 15, Bulgaria

What was his experience with the procedure?

Alisa McGregor (Watson's wife): The first six weeks (afterward) he was wonderful. Just since probably the August long weekend, he's been declining, so we're going back at the end of the September to have the veins reopened and stented (have small tubes inserted). . . . He was very stenosed (with highly diseased veins), but his veins accepted the angioplasty quite well and they would rather not stent if they don't have to.

In the first six weeks, he was actually walking distances, because before we went he could barely walk from the living room to the front door. He could talk. His brain fog was gone. He had an appetite and he ate really fast, like he used to. His left hand had been clenched in a fist for, I don't know, probably a year. It was open and he could actually use it. We golfed; he hadn't golfed for a good year. He had no balance before -- he couldn't stand for any time -- but that's coming back (now), no balance. He was so tired before and that's still gone. He still has energy, it's just he can't walk as well as he did before.

And the brain fog is returning and trouble speaking and trouble swallowing are returning -- and that's the main reason we're going back. That and he knows how good he was (after the procedure). Before we went, I'm not sure he knew how bad he was. . . .

Frankly, we didn't believe that it really could work. You didn't believe it could be as good as it was. But just to look at him -- it was just like somebody snapped their fingers and he was back. He had blue eyes again that had been grey for a couple of years. I don't think I even realized how blue his eyes were, until after.

What would you say to those who say it's all the placebo effect?

I don't know how you can call it that. I don't understand what the placebo effect means to them, because it can't be a placebo when physical things happen and they keep happening. It can't be a placebo that he's not as tired. And by not tired, I mean that he used to sleep for a good couple of hours in the afternoon after he got up at 10 a.m. or 11 a.m. and then he'd be in bed by 8 p.m. because the fatigue was so debilitating.

Nadine Baker, age 47, Regina

MS diagnosis: Relapsing-remitting

Liberation treatment: Aug. 3, Mexico

What was your experience with the procedure?

They found I had blockages in both my left and right jugulars. I had three blockages in the left jugular, two in the right and one in the azygos vein. They ballooned those all out.

It was immediate results. The first thing I noticed right away was my eyesight had restored to the point that colours were just vibrant and everything had a definite shape to them now, instead of having edges that blurred. There was always sort of a white veil that covered things over, all the time. It was just barely noticeable, but it was always there, so things were never perfectly 100 per cent clear. And that was gone. Everything was sharp and clear, the way it's supposed to be.

The other thing is, I could never see my left eye when I was putting my eye makeup on. For some reason, it just disappeared when I would lean forward to look in the mirror -- I had to get close because my eyesight is terrible -- but my vision would not allow me to see my left eye when I was that close, and I could actually see my whole face in the mirror. It restored that, too.

And there was no pain, that was the other thing. My eyes were always in severe pain. Right away, I noticed there was no pain, moving them side to side. So then I crossed my eyes -- I haven't been able to cross my eyes for years. I could cross them and there was nothing, no pain at all. As well, the pain in my feet was gone. My balance was completely restored. We did the tests with the neurologist the day after my procedure and there were no balance issues anymore. . . .

The fatigue was gone. I was bright-eyed and bushy-tailed, is the way I put it, like complete night and day, like I haven't had in years. That's what I found since I came home, I just can't sit still anymore. I'm just constantly on the go.

What would you say to those who say it's all the placebo effect?

That wouldn't give me back my eyesight. There's no way it would get rid of all the pain. . . . As well as my balance, I keep testing it day by day, because I'm afraid it's going to disappear. But it's still there.

The other thing is, my right leg . . . those muscles were so weak, I would have to lift it with my hand into the car, as well as sit on the bed and lift it with my arms to put it into my pant legs. And on Saturday I just stood up, held my pants like a normal person and lifted my right leg and slid it in and no problem. I didn't lose my balance. I had complete control and complete strength to lift my right leg and accurately put it into my pant leg.

I don't know how something that's been gone for 10 years, how you can just think it back. It's not possible. They can say what they like. I know what I know.

Ken Morson, age 53, Dinsmore

MS diagnosis: Secondary progressive

Liberation treatment: July 27, Albany, N.Y.

What was your experience with the procedure?

Everything went really well. They did the angioplasty procedure -- mine was a little longer, they had a little more work to do with the veins, so it was a couple of hours, the procedure. . . . I've had MS for a lot of years, so (the doctor) said the upper part of the jugular veins were really diseased and they wouldn't stay open just with the ballooning, so he had to put a couple of stents, one on each side, to hold the veins open, on the upper part of my jugular veins.

I had some immediate results right on the table. I got sensation back in my legs and in my feet, which I was thrilled about. It's just a whole different feeling now, to get the feeling back in your feet. Walking, it's getting close to being normal again. . . Because of so many years of having MS, I have physiotherapy to work on, building those muscles that have atrophied because they weren't used for so long.

I actually, which was a surprise to me, had a real improvement in breathing. I didn't know I even had a problem with it until after I had the procedure and then breathing was just much improved after that and it stayed that way.

What would you say to those who say it's all the placebo effect?

To me, that doesn't make any sense. You can't have feelings in your feet you didn't have before. I've got sensation in the bottom of my feet. That's continued since the procedure.

When you study up and look at it, it makes a whole lot of sense. When you have blood circulating properly down to your body, draining from your head, bringing circulation to your feet properly, those things will happen.

I asked (the doctor), after the surgery, I don't understand how it can be so instant. He told me, if you don't have blood draining properly that also means you're not having oxygenated fresh blood going to your head as well. That's the part where you get immediate results, because you've got good blood going into your head that wasn't going in there like it should have been before, so naturally that stimulates the nerves and you get improvement in those areas.

That makes perfect sense. (It's like) input and output on a barrel. If you plug the drainage, you can't possibly have anything going in like it should be.

Michelle Walsh, age 37, Beechy

MS diagnosis: Secondary progressive

Liberation treatment: July 15, Bulgaria

What do you think of Canada's reluctance to pursue clinical trials of the liberation treatment?

We're not waiting. We know this isn't happening any time soon with our (federal) government and it's really frustrating, because they're not setting the MS aside. I think that's part of the problem, that when it first came out, it was labelled as a cure for MS. It's not a cure. I'll be the first to say that. And if this didn't work, I'd be the first one to say, 'Don't waste your money -- wait for the clinical trials in Canada.' But the thing is, this is a vascular issue that should be corrected regardless if we have MS or not.

MS being a complex puzzle, I know there are other factors they need to tap into here. This is a big piece of the puzzle, I think, that vascular surgeons need the opportunity to do clinical trials on -- with neurologists, obviously, everyone needs to work as a team on this. . . .

This has helped give me some quality of life back. At 37 years old I was actually fitted for a wheelchair a couple months before we left for Bulgaria. I would have been in that if I had not gone and gotten this done. And I know that wheelchair now is going to collect dust.

MS病友彼此分享著自己CCSVI的經驗和故事