a member of the CCSVI community has passed

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

Re: a member of the CCSVI community has passed

Postby AndrewKFletcher » Thu Aug 02, 2012 12:30 pm

Cece wrote:I just googled her name to verify the details I remembered from Facebook and what do I find? "Please help me." Ok, that makes me cry.

http://www.gofundme.com/HERE-I-GO-AGAIN


"all i do is lay in bed hoping things get better"
Could this have caused the UTI?
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Re: a member of the CCSVI community has passed

Postby Cece » Thu Aug 02, 2012 2:00 pm

1eye, that's a generous idea. I also feel for the husband who is left with the medical bills.

a news article: http://www.cbc.ca/news/canada/saskatche ... ml?cmp=rss

MS affects the bladder, making it prone to not fully emptying, and making bladder infections more common in people with MS.

http://www.globalregina.com/regina+wido ... story.html
Regina widower says his wife's death was 'needless'
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Re: a member of the CCSVI community has passed

Postby erinc14 » Fri Aug 03, 2012 8:07 am

i've frequently had uti's over the last 17 years but every time an antibiotic got rid of it . a simple antibiotic .
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Re: a member of the CCSVI community has passed

Postby erinc14 » Fri Aug 03, 2012 8:10 am

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Re: a member of the CCSVI community has passed

Postby Cece » Fri Aug 03, 2012 8:43 am

“They treated her differently when they knew she went abroad, and that’s in my opinion criminal and unethical,” said Walsh.

Roxy ended up dying from an infection that started in her bladder. Garland had asked the doctor to send more medication through their home care nurse, because his wife was bedridden and unable to travel.

“She [their home care nurse] called and he [the doctor] said absolutely not. She said how about a blood test? He said, ‘absolutely not. The only way she’ll get a test is if she comes in or goes to the emergency room’,” said Garland.

She was dead a few days later. The College of Physicians and Surgeons has said that every patient deserves care, no matter their medical history, but ultimately it’s the doctor’s call.


Read it on Global News: Regina widower says his wife' s death was ' needless'

An access to care failure. And their perception that she received worse care after the doctors knew she'd gone for the CCSVI procedure? If it's even a possibility, then should we not tell our doctors if we've had this done? How do you know when to seek follow-up for complications of a CCSVI procedure if you're keeping the CCSVI procedure a secret?
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Re: a member of the CCSVI community has passed

Postby vesta » Fri Aug 03, 2012 10:11 am

The infection probably went up into her kidney which would be deadly. It's criminally irresponsible to ignore a bladder infection like that. To ignore a patient in need.
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Re: a member of the CCSVI community has passed

Postby tiltawhirl » Fri Aug 03, 2012 10:48 am

This is just fucking disgusting. It absolutely is criminal, and I hope this family sues the college into the ground.

Reading that really broiled my fish.

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Re: a member of the CCSVI community has passed

Postby erinc14 » Sat Aug 04, 2012 7:48 am

tiltawhirl wrote:
I hope this family sues the college into the ground.
tilt

i'm sure the doctor will simply say she refused to go to emergency .
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Re: a member of the CCSVI community has passed

Postby 1eye » Sat Aug 04, 2012 12:07 pm

From what I read, they were even refused a paid-for bladder infection test. That is every Canadian's birthright, and costs very little. I believe this death should be the subject of an inquiry. Was she refused the urine test because a procedure done outside Canada might have given her a bladder infection? Is that the excuse? Did she really refuse emergency treatment, or was that after she had been refused the test? Some answers are begging for questions.
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Re: a member of the CCSVI community has passed

Postby Cece » Sat Aug 04, 2012 4:31 pm

from Michelle Walsh on facebook
I have had alot of emails, phone calls about if we can send cards to Vince and family for your sympathy and condolences about Roxane's passing. I have permission from Vince that this is ok and since Rocky didn't want to have a funeral I think this is a good way for us all to show them our love & support and solidarity as an MS/CCSVI Community that we care.

Vince, Tessa and Brianna Garland
27 Cavendish St Regina,Saskatchewan, Canada S4N 1P1

I want Vince and his entire family to know we are here and care :)
Thanks everyone xo

time for a different sort of letter-writing campaign?
send a card if you can
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Re: a member of the CCSVI community has passed

Postby 1eye » Sat Aug 04, 2012 6:30 pm

AndrewKFletcher wrote:
Cece wrote:I just googled her name to verify the details I remembered from Facebook and what do I find? "Please help me." Ok, that makes me cry.

http://www.gofundme.com/HERE-I-GO-AGAIN


"all i do is lay in bed hoping things get better"
Could this have caused the UTI?


I dread getting spasms and being twitchy because if I can no longer stand it I take a Baclofen. (in this heat wave I have had one). This invariably makes me lose control of my bladder. I have so far avoided a catheter solution to bladder troubles, but I think they are the source of many bladder infections. I have never had one, but I bet if I started using a catheter I would soon have one.

Please don't take this as related to Roxanne's infection. I am only sharing my own opinions and experiences. I'm not a doctor, etcetera.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: a member of the CCSVI community has passed

Postby tiltawhirl » Sun Aug 05, 2012 1:18 pm

Cece wrote:from Michelle Walsh on facebook
I have had alot of emails, phone calls about if we can send cards to Vince and family for your sympathy and condolences about Roxane's passing. I have permission from Vince that this is ok and since Rocky didn't want to have a funeral I think this is a good way for us all to show them our love & support and solidarity as an MS/CCSVI Community that we care.

Vince, Tessa and Brianna Garland
27 Cavendish St Regina,Saskatchewan, Canada S4N 1P1

I want Vince and his entire family to know we are here and care :)
Thanks everyone xo

time for a different sort of letter-writing campaign?
send a card if you can


TYVM Cece.

tilt
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger
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Re: a member of the CCSVI community has passed

Postby Cece » Tue Aug 14, 2012 7:45 am

http://www.wireservice.ca/index.php?mod ... y&sid=8643

a letter from Kirsty Duncan, to the Minister of Health
The tragic passing of Roxanne Garland highlights the lack of follow-up care for and medical isolation experienced by those who have sought treatment for chronic cerebrospinal venous insufficiency (CCSVI) outside Canada.

A key problem is the climate associated with CCSVI. Patients sometimes feel intimidated and even threatened by their physicians. Many feel entirely marginalized.
Minister, a family in Saskatchewan is reeling from the death of a wife and mother. I ask that their grieving not be turned into a cautionary tale about travelling abroad for treatment for CCSVI, but rather, that Roxanne Garland’s memory be honoured with real action regarding follow-up care as her husband is requesting. I believe this issue speaks to one of the fundamental principles underpinning the health care system in our great country, namely that quality health care is a fundamental right of all Canadians.
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