MS patient flown south for long-awaited treatment

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

MS patient flown south for long-awaited treatment

Postby erinc14 » Wed Jun 23, 2010 2:15 pm

The notes were short and sparse, too sparse for the growing Facebook crowd waiting for word.

Armed with cameras, an ipad, iphone and newly-acquired passports, Patrick Farrell was the last to board the Pilatus PC 12 air ambulance taking his wife to a U.S. clinic for treatment Wednesday morning.

"I'm anxious," said the Barrie father on the tarmac at Lake Simcoe Regional Airport between Barrie and Orillia. "It's been a tough slug. But what's going to happen is going to happen."


Barb Farrell, a 46-year-old mother of a 10-year-old boy, has multiple sclerosis. She's been in Barrie's Royal Victoria Hospital for about six weeks, most of her functions diminishing.

She tilts her head slightly, but it's her eyes, beautifully made up, that seeks out the photographer documenting her precedent-setting trip.

The procedure she is seeking in the U.S. is vascular angioplasty. Angioplasty is typically used on heart patients to clear blockages. It is considered an unobtrusive and relatively inexpensive treatment. But it eludes Canadian patients with MS.

Barrie vascular surgeon Dr. Sandy McDonald treated six patients in Barrie earlier this year. Farrell was booked to have it done through a radiologist, but two days before it was to happen, it was cancelled. No more angioplasty procedures for patients with MS went ahead.

Ontario considers it experimental and no Canadian province is permitting it.

The Farrells' situation is capturing hearts across the Internet and at home in Barrie. Now the Farrells have a private benefactor who is picking up the entire tab for the treatment. There's the cost of the transport ambulance from the hospital to the airport, the specially-equipped jet manned with two

paramedics and pilots. Then there's the procedure itself and the trip back.

"We've got some really good people here," said Farrell. "My hope is something good will happen on the table."

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But there's a reality as well. Barb's condition is advanced. She has a feeding tube because she can't swallow. She is bed-bound. The brief times she tries to utter a word, she is barely audible. A do-not-resuscitate order, issued before the trip was even conceived, still stands. A month ago there was a family discussion about a transfer to Barrie's new hospice centre.

Every time Patrick posts an update on his Facebook page, at least a dozen people respond with hope.

The first was in the morning: " Paramedics are here starting transfer now.

This is going to happen!"

That was followed a short time later with: "On the road!"

Then: "In the air! Wish us luck!"

Three hours later: "We are here and registered!"

And then the wait. Facebook, a worldwide Internet community of others with MS and a concerned audience at home in Barrie are waiting for the next post. And they're hoping.

Finally, nearly seven hours after the Farrells left the airport came the message everyone was waiting for: " Barbie is out of the O.R. and OK. Her voice is quite clear and she is good.

Very bad stenosis on the left jugular, used 2 stents, angioplasty on the right too."

Within three minutes there were messages from five well wishers. They continue to watch, first to ensure the trip home is a safe one. And then for some sign of improvement.

http://www.thebarrieexaminer.com/Articl ... ?e=2636983
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Postby PCakes » Wed Jun 23, 2010 2:25 pm

..there are so so many moments on these sites that inspire ' a look to the skies'...

erinc14... thank you for posting this..
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Postby Guider » Wed Jun 23, 2010 9:54 pm

Yes thank you erinc14 for posting this. I admire her fight for this procedure and I pray that she will have obvious and lasting good results. :) :)

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Live to the fullest; Love passionately; Laugh contagiously!
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Postby 1eye » Wed Jun 23, 2010 10:37 pm

"..there are so so many moments on these sites that inspire ' a look to the skies'..."

inspires atheists too! can't look at skies, fall down too easy.
"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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Postby erinc14 » Thu Jun 24, 2010 6:20 am

"She can wiggle her feet! It has been years since she could. She can move her right arm!"

"I am at a loss for words about how they can let somebody deteriorate to the point of death," said Paulette O'Leary, a Toronto neuroscientist with MS who underwent the procedure in the U.S. last month. "I'm devastated, as a health-care professional, that we cannot help people.

"I'm still beyond words on how they can deny someone who's going to die."

http://www.thebarrieexaminer.com/Articl ... ?e=2637475
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Postby sbr487 » Thu Jun 24, 2010 6:59 am

A person who is so disabled should be supported by what ever available options. This is what Dr. Z called compassionate grounds; this is what is lacking in people who are in position of authority ...
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Postby erinc14 » Thu Jun 24, 2010 7:07 am

There appears to be a crime against humanity taking place on Canadian soil .
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Postby DBird » Thu Jun 24, 2010 4:58 pm

It was stated on another site that CEO at Royal Victoria Hospital stopped all angioplasty surgery for MSers. If that's the case, Shame shame shame.

So happy for the Farrell's.
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hi

Postby solney » Thu Jun 24, 2010 10:22 pm

hi , this could be a story about my mother, but we dont have her in hospital and are currently looking for ways to get her so far overseas for the liberation. i cant believe our country is forcing us to transfer a sick lady so far to offer her some hope of life. shame on them
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Postby elyse_peace » Thu Jun 24, 2010 11:40 pm

Hi Solney -
I'm sorry about your mother's illness. :(
I hope she can get the help she needs soon. I think the disease may be harder on those who have to watch as their loved ones lose ground.
The procedure is being done in Costa Rica. Maybe you can stay on the continent.
http://passportmedical.com/2010/05/ccsv ... osta-rica/
Best to you both. Good luck.
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Postby MaggieMae » Fri Jun 25, 2010 6:41 pm

I'm reading through this site tonight trying to find out how Barb Farrell is doing since the initial information we received from her husband. Am I missing something? Nothing new since the procedure on Wednesday.
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Postby Cece » Fri Jun 25, 2010 6:54 pm

There was an update on facebook yesterday that she was very tired because she hadn't slept all night (either the night before the procedure or the night after?) and very emotional.

I have my fingers crossed that her initial improvements are holding....
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby MaggieMae » Fri Jun 25, 2010 7:31 pm

Thanks CeCe. I hope so too.
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Postby Cece » Sat Jun 26, 2010 10:27 am

An update on Barb from the Facebook site: she's still recovering from the trip, she's tired. Her husband reminds us that she is an extreme case.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Vivianne766 » Sat Jun 26, 2010 11:57 am

erinc14 wrote:There appears to be a crime against humanity taking place on Canadian soil .

YES. AND WE WILL FIND OUT THOSE RESPONSIBLE FOR IT.
THEY SHOULD BE PUNISHED.
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