Canadian media reporting on death from CCSVI complications

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

Postby thornyrose76 » Tue Dec 14, 2010 7:45 pm

concerned wrote:My mother... because she has MS and is interested in CCSVI. I've declared that openly since the beginning.


Okay, well I have MS and I am interested in CCSVI as well. Is she going to be tested and treated in the near future? States, Albany?
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Postby concerned » Tue Dec 14, 2010 7:51 pm

thornyrose76 wrote:
concerned wrote:My mother... because she has MS and is interested in CCSVI. I've declared that openly since the beginning.


Okay, well I have MS and I am interested in CCSVI as well. Is she going to be tested and treated in the near future? States, Albany?


We don't have any money or passports and just taking her to the hospital for doctors appointments, like I did today and will again thursday (which, taking paratranspo is a 5-7 hour ordeal), is extremely tasking on her and further travel would probably be out of the question, although if there were an opportunity to do so she would probably try some how, and I would help like I do on a daily basis.
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Postby thornyrose76 » Tue Dec 14, 2010 7:57 pm

okay, I believe you, that you help as much as you can. What province do you live in, if you don't mind me asking?
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Postby concerned » Tue Dec 14, 2010 8:01 pm

Ontario.


I really have put everything out on the line and have nothing to hide whatsoever. You can add me on facebook if you like.
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Postby thornyrose76 » Tue Dec 14, 2010 8:42 pm

Okay, I believe you, I just really didn't know who you were/are initially and I'm in a similar boat as your mom. I can type but the hands are beginning to go, I haven't walked since 26 prior four years couldn't walk well, and I'm not quite 34 and a half so believe I know wherer you are coming from. Testing and treatment this side of the 49th parallel in tandem with a research arm could/would help me and your mum and cost far less than $10 000 +.
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Postby thornyrose76 » Tue Dec 14, 2010 8:45 pm

It's what is going on in this country which is wrong. Here is a potential theory that could pan out and before anybody can do anything about it the gov't and the medical establishment says "NO , NO...No!!!!!" And this attitude is hurting me and your Mum and thousands of others.
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Postby Cece » Tue Dec 14, 2010 9:05 pm

thornyrose76 wrote:Okay, I believe you, I just really didn't know who you were/are initially and I'm in a similar boat as your mom. I can type but the hands are beginning to go, I haven't walked since 26 prior four years couldn't walk well, and I'm not quite 34 and a half so believe I know wherer you are coming from. Testing and treatment this side of the 49th parallel in tandem with a research arm could/would help me and your mum and cost far less than $10 000 +.

oh, thornyrose. :( I knew concerned's story, I didn't know or had forgotten all of yours. MS is awful.
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Postby Cece » Tue Dec 14, 2010 9:16 pm

concerned, one thing I've still wondered, you'd said your mom was tested a year ago for CCSVI. The only possible places back then were Stanford, if it was before the shutdown, maybe False Creek, and Buffalo as part of their study. In March, Buffalo became available to do testing for $4500. False Creek was $2000, IIRC. It is a little hard to believe your mom was tested back then, especially if travel was not part of the picture.
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Postby Lyon » Tue Dec 14, 2010 9:35 pm

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Last edited by Lyon on Sun Nov 20, 2011 5:04 pm, edited 1 time in total.
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Postby Cece » Tue Dec 14, 2010 9:42 pm

I asked him about it when he first mentioned it, because it struck me as odd.

Back in February, I was trying to get an MRV locally, here in the US even (not so backward as Canada when it comes to CCSVI) and I had no success.

Cute picture, though, Lyon, and I get your point, it's only because grilling was already ongoing that I'd thought I'd ask again.
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Postby concerned » Tue Dec 14, 2010 9:54 pm

Cece wrote:concerned, one thing I've still wondered, you'd said your mom was tested a year ago for CCSVI. The only possible places back then were Stanford, if it was before the shutdown, maybe False Creek, and Buffalo as part of their study. In March, Buffalo became available to do testing for $4500. False Creek was $2000, IIRC. It is a little hard to believe your mom was tested back then, especially if travel was not part of the picture.


I think I've said this before, but it was just at a local hospital, and the doctor wasn't trained in the Zamboni method.

EDIT: also, this was in december of last year, when I was out of town for my grandmothers 89th birthday.
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Postby scorpion » Wed Dec 15, 2010 7:37 am

concerned wrote:
Cece wrote:concerned, one thing I've still wondered, you'd said your mom was tested a year ago for CCSVI. The only possible places back then were Stanford, if it was before the shutdown, maybe False Creek, and Buffalo as part of their study. In March, Buffalo became available to do testing for $4500. False Creek was $2000, IIRC. It is a little hard to believe your mom was tested back then, especially if travel was not part of the picture.


I think I've said this before, but it was just at a local hospital, and the doctor wasn't trained in the Zamboni method.

EDIT: also, this was in december of last year, when I was out of town for my grandmothers 89th birthday.


Trust me Concerned if your mother would have tested positive for CCSVI no one would be asking you a thing.
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Postby CCSVIhusband » Wed Dec 15, 2010 7:48 am

scorpion wrote:
concerned wrote:
Cece wrote:concerned, one thing I've still wondered, you'd said your mom was tested a year ago for CCSVI. The only possible places back then were Stanford, if it was before the shutdown, maybe False Creek, and Buffalo as part of their study. In March, Buffalo became available to do testing for $4500. False Creek was $2000, IIRC. It is a little hard to believe your mom was tested back then, especially if travel was not part of the picture.


I think I've said this before, but it was just at a local hospital, and the doctor wasn't trained in the Zamboni method.

EDIT: also, this was in december of last year, when I was out of town for my grandmothers 89th birthday.


Trust me Concerned if your mother would have tested positive for CCSVI no one would be asking you a thing.



She did test positive for CCSVI ...

let me find the quote.
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Postby Blaze » Wed Dec 15, 2010 7:53 am

scorpion wrote:
concerned wrote:
Trust me Concerned if your mother would have tested positive for CCSVI no one would be asking you a thing.


Actually, Scorpion, people asked me where I was tested when i was tested positive.
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Postby CCSVIhusband » Wed Dec 15, 2010 8:13 am

Found it ...

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Posted: Fri Nov 26, 2010 1:37 am Post subject:
Thanks Lyon and Cece.


Also, my mom was "screened" for CCSVI almost a year ago. They found narrowing, but not stenosis.



...


From the thread "Experimental MS treatments and the ethical issues." page 2


You can't find 'stenosis' per se by doppler (and that's a broad term anyway - and if the issue is valves as our doctors conclude, those are well below the clavicle, and would be seen via venogram, which this case seems to warrant based on "narrowing") ... you could see narrowings though. (you can ask Dr. Sclafani what he'd do if he saw narrowings on an ultra-sound though ... he's available)

again, I'm not getting into a tit-for-tat ... I'll just let the statements and arguments of others continue. Just think all the cards should be laid on the table for everyone to see what has been said and when.


just saying.


me

"================" <--- the fray
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