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 London Mum pins hope on surgery in Bulgaria

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PostSubject: London Mum pins hope on surgery in Bulgaria   Sun Jun 27, 2010 11:52 am

London Free press 27 June 2010

London Mum pins hope on surgery in Bulgaria

Multiple sclerosis: The controversial procedure involves unblocking neck veins


Before she completely loses her ability to walk, Pat O’Connor is taking a shot at a controversial treatment for multiple sclerosis.

Despite the fact the procedure isn’t covered by Ontario health insurance, the London single mom has booked an operation at a clinic in Sofia, Bulgaria, for July 29.

“Every day I feel like somebody has hit me over the head with a lead pipe. That’s how I feel. If I could have that sensation go away, the fatigue, I would stand in line for this,” O’Connor said.

Pioneered by Italian doctor Paolo Zamboni, the procedure involves unblocking veins in the neck of multiple sclerosis patients using angioplasty to restore blood flow.

Reports of MS patients being able to get out of their wheelchairs and climb stairs have captured the attention of people with the disease around the world.

In Canada, health officials and the Multiple Sclerosis Society of Canada have taken the position that Zamboni’s work is interesting, but needs to be validated by rigorous scientific research.

The society is calling on the Canadian government to put $10 million into researching Zamboni’s procedure and announced earlier this month it has granted $2.4 million to support scientists studying it.

O’Connor, who relies on a walker and scooter for mobility, said she can’t wait for years of research to be completed.

“If I waited for the government to approve it, I would be in a nursing home,” she said. “I am pretty sure they will approve this in five years, but I don’t have that time.”

The operation in Bulgaria will cost O’Connor about $6,500. In total, she expects her expenses will total more than $10,000.

“If you think about an operation that will change your life, would you pay $6,000 to have that corrected? I would shake a tin cup and that is what I am doing,” she said.

O’Connor, with family and friends, has organized a fundraising car wash Saturday from 9 a.m. to 1 p.m. at Byron Auto at the corner of Commmissioners Rd. and Boler Rd.

“I want to be liberated,” she said. “I want to go back to work.”

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I'm one of those people you may have read about who has multiple sclerosis and is going to a foreign country for the so-called "
Liberation"
treatment.

In my case, it's Sofia, Bulgaria, July 29, hopefully to be treated for the clogged neck and/or chest veins that may be responsible for my MS, a neurological disease that can cause crippling mobility problems, pain and fatigue.

Technically, I'm to be treated for something called chronic cerebrospinal venous insufficiency or CCSVI.

The treatment involves inserting a balloon through a catheter and inflating it to unblock the veins, restoring proper blood flow to the brain.

It's going to cost many thousands of dollars, none of it covered by OHIP.

Now, some people have asked me why I would go to all the trouble and expense for a procedure some Canadian health officials say is unproven and possibly risky.

First, in my case, the MS is quite advanced. And over the years, it's gradually been getting worse.

I get around using an electric scooter or a walker. I can still walk, although with difficulty, dragging my left foot. I suffer fatigue. I have difficulty getting out of bed, putting on shoes and getting off a chair.

Unfortunately, the Canadian health-care system has been able to do very little to help me. I have tried many drug treatments and have been on clinical trials for years with terrible side-effects. Nothing works.

I have been repeatedly told there are no successful treatments for the kind of MS I have, which is secondary progressive MS.

But I need to be treated before it's too late.

I have a household to take care of and a young son to raise. I really try to cook healthy dinners every day, but as a single mom, it's difficult.

I'm afraid every day I'm getting a little bit worse. As you can appreciate, it was with great excitement I learned of the work last year of Dr. Paolo Zamboni, professor of medicine at the University of Ferrara in Italy.

Using a Doppler ultrasound, Zamboni discovered constricted neck veins in a large proportion of his patients with multiple sclerosis.

He theorizes MS is a result of improper blood flow to the brain, not an auto-immune disease as is the current medical thinking.

Many of the people he treated showed remarkable improvement.

Since then, hundreds, perhaps thousands, have had similar treatments in Bulgaria, Poland, India and other countries.

I've seen reports that show people with fairly severe MS, who have had the procedure, literally get out of their wheelchairs and start walking, washing clothes, and managing their life.

It brought tears to my son's eyes when he first saw one of these reports airing on CTV's W5.

To think there was hope and his mother could get better, it would be a miracle.

So no, I am not inclined to wait for the federal and provincial governments to decide this is more than "
experimental"
treatment. I do not want to wait for years of clinical trials while my condition deteriorates.

I want this done as soon as possible and if you were in my shoes, I bet you'd feel the same way.

Now the tough part: raising money.

My family and friends are working on fundraisers, including a charity car wash at Byron Auto on Saturday . I've set up a Facebook donation page.

With costs of ultrasound, the procedure, travel, accommodations, I'm expecting a bill of $10,000 or more.

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PostSubject: Re: London Mum pins hope on surgery in Bulgaria   Sun Jun 27, 2010 12:03 pm

Yes, of course this is worth it. It's worth 100, 000 USD or whatever you can pay if you get mobility back. Those of us who have it soon realise how debilitating something like this can be. If you are 70, for example, and break your foot, yet have to travel to a foreign country, you find you can't walk very far and have great difficulty in driving a hire car and this can't even be 2% of what this poor woman has to face daily.

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PostSubject: Re: London Mum pins hope on surgery in Bulgaria   Sun Jun 27, 2010 12:35 pm

coriolanus wrote:
If you are 70, for example, and break your foot, yet have to travel to a foreign country, you find you can't walk very far and have great difficulty in driving a hire car and this can't even be 2% of what this poor woman has to face daily.
Regards.


I find that a strange comparison ,!!


I do hope the lady,s treatment is successful
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PostSubject: Re: London Mum pins hope on surgery in Bulgaria   Sun Jun 27, 2010 4:57 pm

I totally understand what this poor lady is going through. I had an Uncle that had MS and I'm sure that there is something that can be achieved by this procedure. Even if it is only peace of mind, and that she has tried everything she possibly can to alleviate the pain and torment of this terrible disease. I wish her good luck.

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PostSubject: Re: London Mum pins hope on surgery in Bulgaria   Sun Jun 27, 2010 6:56 pm



Angel Angel Angel Angel All our prayers will be with her and sincerely hope everything works out Angel Angel

Oddy s

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