Tuesday, April 6, 2010

"No Stenosis Found" 
- Noreen Leasak's Liberation Trip To India
Tuesday, April 6, 2010 at 7:27PM
Colleen O'Shea in Apollo Hospital, Bob Leasak, Dr. Venugopal Balaji, False Creek Surgical Center, Marion Simka, Noreen Leasak, Paulo Zamboni, Surgical Tourism of Canada, Treatment, Yasmeen Saheed
I have been following the CCSVI story for the past four months, and I've made several friends in the MS Community because of it. The relentless Noreen Leasak was one of those who inspired me to write - I read an article about her that appeared the Vancouver Sun when she first went to False Creek Surgical Center in Vancouver for scans. I contacted her and found that she was a wildcat - tearing through research, looking for solutions. I believed she'd found it.
She got back from India on Good Friday and as soon as she was strong enough to pick up the phone and talk to me about her experiences, I've been worrying about what I was going to write. I was, like the patients themselves who go abroad, expecting some positive change for her because of the Liberation Treatment. I did not expect that they wouldn't find any signs of CCSVI in her at all.
Thank goodness there are doctors who really care about their patients, their work - and CCSVI. Marian Simka is one of these outstanding people. I wrote to Dr. Simka asking for answers about how this could have happened to Noreen and he was quick to respond. I read his and  shared it with Noreen until we both understood what it meant. Still, Noreen is discouraged, but I know she isn't going to give up hope. After all, she is the greatest CCSVI Cheerleader that I've met to date.
We all need to remember that it is early days and we have a lot to learn. And, as I've seen, the more you search, the more you learn. I found a woman yesterday, Wendy Sturek of Calgary, who was relapsing remitting and who went to Simka's clinic in February. Although the attending surgeon couldn't see any stenosis or constrictions in her veins at all, Wendy said she didn't care, she wanted the balloon angioplasty anyways, which they did on one internal jugular vein. She has had an amazing recovery: her eyesight returned to full strength, her eye and hand co-ordination is back, she doesn't have a heavy head anymore, can sleep well and not feel tired, and is loaded with energy. I will write about her soon.
I'm going on here without ever seeming to end, and I haven't even begun Noreen's story. Here it is.
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Noreen Leasak and her husband Bob are disappointed. The Lacombe, Alberta couple believe that getting the Liberation Treatment for Noreen's Multiple Sclerosis would be worth the $25,000 price tag and a trip halfway around the globe to Chennai, India for the operation. But when they got there, the doctors couldn't perform the procedure. Noreen did not exhibit any signs of stenosis.
The “Liberation Treatment” is a procedure where balloon angioplasty is used to treat Chronic Cerebrospinal Venous Insufficiency (CCSVI), a condition that recent research shows effects people like Noreen, people with Multiple Sclerosis. When she got there, the doctors couldn't believe what they saw. Noreen had no blockates or narrowing of her veins.
"The doctors there began to question whether I really have MS and if I had something else," Noreen says. "I said, well, you have the MRI's. You can see my lesions. I'm pretty sure I have MS."
They agreed.
Noreen was first diagnosed with relapsing/remitting MS 14 years ago, with both a lumbar puncture and an then MRI scan which revealed lesions in her brain. Her right arm and left leg feel numb. She suffers from extreme fatigue, has a short term memory problem, and suffers from moderate pain all the time with severe pain at times. "I'm thinking right now that it totally blows Dr. Zamboni's theory out the window," Noreen recalls. Zamboni’s theory on CCSVI ties stenosis in the veins with Multiple Sclerosis.
Her attending vascular surgeon at the Apollo Hospital in Chennai, India, Dr. Venugopal Balaji, was “shocked and was nearly in tears”, says Noreen.
Noreen and Bobs' wild ride started in November after the airing of CTV's W5 program that shook the Canadian MS community, featuring Italian professor Paolo Zamboni's theory on the blockages and his ensuing treatment, the Liberation Treatment, where angioplasty is used to unblock veins in the neck that carry deoxygenated blood back from the head to the heart.
After the program, excited about the prospect of the Liberation Treatment being a cure, Noreen started hunting for doctors, hospitals and clinics in Canada that would take a look at her neck with Doppler/MRV and see if she was a candidate for the treatment.  After 14 years of living with MS, she’d become increasingly worried that her MS is a time bomb, and that her relapsing/remitting form of the disease would become secondary progressive soon – a common occurrence for many long-term r/r patients.  She’s tried to be as prepared as possible – making sure her home is wheelchair accessible, the hallways are wide enough for a wheelchair, there’s direct indoor access from the garage.
She found a clinic in Vancouver - the False Creek Surgical Center - and she went.
They found nothing. No stenosis.
But a few weeks later, she got a phone call asking her come back to False Creek. They'd received a software upgrade for their machinery and were hopeful that the stenosis would now be viewable.
It wasn't.
In the meantime, Noreen had contacted Yasmeen Sayeed, the CEO of Surgical Tourism of Canada, who had received so many inquiries that she decided to put a team of doctors in India together to carry out the Liberation Treatment. Surgical Tourism of Canada organises paid-for elective surgeries for Canadians in hospitals around the world to reduce waiting times. Although the appropriate trials have not been done, people are willing to take the chance and travel out of the country for the procedure because, as Noreen says, "it makes sense.". Noreen was on the top of the Surgical Tourism list and was guaranteed a spot if stenosis was found.
One of the clinics where clients can get the Liberation Treatment is in Poland, run by Dr. Marian Simka, who has been performing the Liberation Treatment to an international clientele for the past 18 months. Dr. Simka, at the beginning of March, was invited to False Creek to share his expertise in CCSVI, and once again Noreen was asked to return to the Clinic so Dr. Simka could take a look at her himself.
At False Creek, Noreen's doctors didn't see any changes in what they’d seen on the two previous visits. However, when Dr. Simka took a look at her scans, he felt there were blockages - 60% on one side and 40% on the other.
"When I asked him if I should travel to India for the treatment, he said 'yes'," Noreen recalls.  “So off we went.”
Dr. Simka has been informed about Noreen’s experience in India and has responded as follows:
"We have already operated on 212 patients and in 10 of them (5%) no venous blockage was found intra-operatively, despite obvious sonographic and MR evidence for CCSVI. We cannot interpret these findings unequivocally. One explanation is that in some patients we are over-interpreting sonographic and MR findings. But also - standard venography is not 100% sensitive, since (an) intravenously situated catheter changes slightly (the) behavior of the vein. Interestingly, one of our "negative" patients was readmitted and during (a) second intervention (2 months after the first one) obvious pathology was found and after balloon angioplasty the patient experienced (a) big clinical improvement. So, perhaps these venous lesions are more "active" than can be suspected and are not always seen. The other argument for this option is that in several our patients who were found pathology only on one side, (a) follow-up after one month following procedure has revealed a stenosis on the other side that has been initially found normal. Please find the above-stated as conjectures rather and not as clinical evidence. Nevertheless, the things are very complicated."
Because no stenosis was found when she was in India, Noreen now thinks differently about CCSVI and MS.
“I don't have CCSVI and I have MS,” Noreen says. “But just because they weren't able to help me, all of that enthusiasm from the people with MS shouldn’t diminish. We should all be keep pushing the doctors and MS Societies, holding them accountable, letting them know that we want answers. We want a cure.”
“I'm so thankful that my husband and I could actually afford to have these tests done. But there are a lot of people who aren't able to afford it, and there's no excuse for why these tests are not available in Canada.”
As for CCSVI, Noreen is practical.
“If there's a blocked or twisted vein that's inhibiting the blood flow in your body, it should be corrected. If there’s something wrong, it should be made right. And it should absolutely be covered under healthcare.  But it doesn’t look like it's the cure my MS,“ she adds.
“I am the least likely person to say anything against Zamboni’s theory. I wanted it so bad – for me, for all of us with Multiple Sclerosis. But it isn’t the cure for me. I have MS and I had no positive stenosis.”
“We need the force of many to fight MS. That force is huge compared to the force of one, and I’ve never seen such a wonderful movement of people working together to do something against MS ever before. That cannot stop.”
Now, Noreen’s advice to others is simple.
“You have to do your own research, start thinking for yourself. Ask questions about your disease and don't take something just because it’s being handed to you,” she says.
“And fight for the treatment of blocked veins in Canada. And for a cure for MS.”
There are other footnotes to this story. Like the care that they received in India. Noreen and Bob were both impressed.
"The treatment at the Apollo Hospital in Chennai was first class," she says. "They were professional. Caring. They took the time to introduce themselves - each and every single one of the healthcare professionals who had anything to do with me. They asked questions and more questions and I felt that they really cared about helping me. It was really first class."
And for Surgical Tourism of Canada's and the hard-working, mother-hen Yasmeen Sayeed, Noreen has only words of praise.
"Yasmeen is a tremendous woman," says Noreen. "I don't know how she does it all, but she does it well! It was very well organised - the medical aspect, the wellness clinic we went to - the meals we ate. It was very well done. I was really impressed."
So what will happen next? Well, Noreen is trying to get over her jet-lag and the emotional roller coaster she's been on over the past few months. She and Bob, she tells me, will take a bit of time to discuss their next move - and if there will be any. In the meantime, her inbox is filled with emails from people around the country who are looking for answers, and she's hoping she'll be able to get to them soon.
Article originally appeared on Heart Superdoc calls foot-dragging on CCSVI "unethical" (http://for-greet.squarespace.com/).
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