The Italian doctor suggested that some cases are vascular disorders caused by vein blockages that lead to a build-up of iron in the brain. The possible way to free up the compromised blood flow – called chronic cerebro-spinal venous insufficiency (CCSVI) – is angioplasty. The procedure uses tiny balloons to open constricted veins.
The Fredericton Junction man underwent liberation therapy in Albany, N.Y., in an attempt to alleviate health issues caused by multiple sclerosis. Donovan is coming to Woodstock on Saturday to speak with community members about his experiences with MS and liberation therapy.
He said that the two-hour surgery produced immediate, positive results.
"After the surgery I immediately had my balance and energy level back," he said. "My cognitive issues disappeared and I could walk fairly normally. I don't have to use a wheelchair anymore."
手術後我立刻可以平衡, 我覺得我的活力都回來了, 我可以像以前一樣走路,再也不用輪椅了!
Donovan suffers from relapsing-remitting MS, which means that his symptoms will worsen for a time and then seem to get better.
"When it comes, I am in a wheelchair for two to three months at a time, and when it gets better I have go to rehab," he said. "Then I can walk while holding onto furniture, but not for long distances because all of my right side is affected. I never have my balance and I walk with difficulty."
Before he had the liberation therapy procedure, Donovan was hospitalized for at least two months a year for the last four years.
"Now I go bowling every week and I can jump up and down with two feet. That is a big deal to someone with MS," Donovan explained. "People tell me they see the improvement every week when I bowl."
我現在每個星期都去打保齡球, 而且我可以跳2英呎高, 這對MS人而言幾乎是不可能的事情!大家都說我每星期都在進步!!
Liberation therapy is angioplasty of the jugular veins.
"Angioplasty has been around for 30 or 40 years, but it is new to people with MS," Donovan said.
"Last year W5 presented a program that told of this procedure that is having great results for people with MS," said Margaret Frenette, one of the co-ordinators of the Woodstock MS Self-Help Group.
"Italian doctor Paolo Zamboni believes there are abnormalities in the veins draining the brain and spinal cord in people with multiple sclerosis, and that these blocked veins are to blame for the debilitating disease. He suggests treatment for MS is to open the veins by inflating them with small balloons (angioplasty)."
The term used to describe this compromised blood flow in the veins is chronic cerebrospinal venous insufficiency (CCSVI).
"CCSVI is the venous anomaly. Neurologists have been going on the belief that MS is an auto-immune disease, now people are saying maybe it's vascular; that's the debate that's going on right now in Canada," said Donovan.
Donovan had to travel to New York for his surgery, as the procedure isn't approved for use on MS patients in Canada. It is, however, approved in the United States, Italy, Poland, Mexico and other countries.
"We feel like we are drowning in a pool and the government is standing over us with a life jacket, saying 'We can't throw this to you until we've tested it for 10 years.' I am making a plea on behalf of all people who have MS to have this treatment made available for compassionate reasons," Donovan said.
"We hired a lawyer and will be taking legal action in Ontario against the Charter of Rights and Freedoms, a charter challenge. Section 15 of the charter states that everyone in Canada is equal, whether they are disabled or not. It goes to court in the next 30 days.
"I'm not a lawyer, I'm not a doctor, I'm just a guy that got better."
Donovan will be speaking about his experience Saturday at 1 p.m. in the Carleton Civic Centre community room in Woodstock.
閱讀更多: http://dailygleaner.canadaeast.com/cityregion/article/1258640
Nearly a month after undergoing experimental liberation treatment for Multiple Sclerosis, Swift Current's Mike McIntosh has shown marked improvements after enduring MS symptoms over three decades.
McIntosh was part of a group of Canadians who traveled to Poland in August to undergo an experimental procedure which uses angioplasty to open a neck vein and drain blood from the head.
Scientists are beginning to explore whether Chronic cerebrospinal venous insufficiency (CCSVI) is a root cause of MS.
Having undergone surgery on August 26, McIntosh is reporting that the procedure has resulted in major improvements.
"I'm standing here. I've been standing here a long time. I couldn't stand here that long, not without grabbing you and holding you. I'm standing pretty steady," McIntosh said moments after a 45-minute presentation to a group at the Riverview Village Estates on Sept. 16.
"I can walk. I can get up and walk. I can sit all evening and watch tv without pain and spasticity in my legs. I still have a feeling in the back of my legs, like pins and needles, but it's nothing compared to what it was."我可以走路了，可以整夜坐著看電視且腿再也不會感到疼痛和抽筋了, 雖然腿後方仍有針刺的感覺，比起之前，這不會太困擾我
McIntosh describes the procedure as having dirty blood released from the brain.
"I know Dr. (Paolo) Zamboni talks about the garbage that the blood leaves in the brain, all the dirty blood - no oxygen in it...it leaves iron deposits in our brain. And so they pile up and so white blood cells attack them after a while."
"This is MS. This is what causes it. The blood just goes up to your brain and can't get out. There's no drain. You've got dirty blood with no oxygen in your head, stuck there all the time, only coming down the wrong places. Every time you lay down you get a headache. It's just not a good scene."
"We just have to study it and find out what it is," he said. "I hope they just get to work on this right away, because it sure helped me."
During his surgery, McIntosh said doctors made a small incision in his upper leg, and a tube was inserted through a vein to reach his jugular veins.
He said the vascular surgeon and neurosurgeon conducting the procedure told him "You might feel pressure, and then they pumped it up. At that point my eyes all went like there were clouds in them, like grey clouds and brown clouds and dust balls flying by, but I could see perfectly behind them. They were floaters."
氣球充氣過程中McIntosh的感覺
"I said to the doctor I can see floaters. And he said, 'yes, normal. Yes, normal. It's normal.'"
He said it was unique sensation when they released the pressure during the angioplasty
"It was like a spray gun went off," he recalls. "And all the stuff in my eyes disappeared."
"It's just dirty blood. They were holding back dirty blood. I could see the dirty blood, and at that point they let it go."
McIntosh said his story, and the experiences of others following this experimental treatment, are too compelling to ignore.
"They are scientists and they impress that upon you all the time," he said. "We hope for the best results. It's a hope. They don't promise you anything and they tell you its experimental. And that's what it is. And it's a good experiment as far as I'm concerned."
"It's got to happen. There's too many of us coming back with good reports."
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.
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