ccsvi & canadian neuros

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

ccsvi & canadian neuros

Postby kiwee » Tue Aug 03, 2010 4:45 am

looking for some input from canadians who have had the procedure done and how they were rec'd by their neorologists.
currently my neuro is very active in my ms case.
i get yearly mris of my spine and head and he always checks up on me to see how things are.
did anyone get cast aside for doing it? did they care? were they even interested? were you given the chance to demonstrate your improvements through a clinical exam or mri?
thanks all!
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Re: ccsvi & canadian neuros

Postby dania » Tue Aug 03, 2010 5:44 am

kiwee wrote:looking for some input from canadians who have had the procedure done and how they were rec'd by their neorologists.
currently my neuro is very active in my ms case.
i get yearly mris of my spine and head and he always checks up on me to see how things are.
did anyone get cast aside for doing it? did they care? were they even interested? were you given the chance to demonstrate your improvements through a clinical exam or mri?
thanks all!

I have always had a good relationship with my neuro. I went for stem cell treatment last Oct. Although he did not think it would work he did ask me if I would allow them to take blood samples from me before I had it done as he said this way the only thing they could see if something changed. I have gone for 2 CCSVI procedures and have kept him updated by email. He has always replied to me.This was one I received yesterday.

Thank you for the update. The Canadian neurology community is trying to gather objective data from all of the individuals who have undergone the procedure to see if we can determine how individuals are selected for the procedure, what outcomes there are including whether objective and subjective measures go hand-in hand, and what are the complications. I will update you as we have information.
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Postby kiwee » Tue Aug 03, 2010 6:15 am

hi dania, your second treatment? can you elaborate as to why you have had another treatment done?
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Postby dania » Tue Aug 03, 2010 6:29 am

kiwee wrote:hi dania, your second treatment? can you elaborate as to why you have had another treatment done?

I week after the first treatment all my improvements disappeared and I was worse than I have ever been. I had restenosed which Zamboni said 50% of patients do. With the second procedure I did not recapture my improvements from the first. The only thing that is better is my vision. I will try and have it done again as I know something is still blocked.
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Postby kiwee » Tue Aug 10, 2010 8:06 am

dania wrote:
kiwee wrote:hi dania, your second treatment? can you elaborate as to why you have had another treatment done?

I week after the first treatment all my improvements disappeared and I was worse than I have ever been. I had restenosed which Zamboni said 50% of patients do. With the second procedure I did not recapture my improvements from the first. The only thing that is better is my vision. I will try and have it done again as I know something is still blocked.


how soon did you fly after the initial treatment?
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Postby dania » Tue Aug 10, 2010 8:20 am

kiwee wrote:
dania wrote:
kiwee wrote:hi dania, your second treatment? can you elaborate as to why you have had another treatment done?

I week after the first treatment all my improvements disappeared and I was worse than I have ever been. I had restenosed which Zamboni said 50% of patients do. With the second procedure I did not recapture my improvements from the first. The only thing that is better is my vision. I will try and have it done again as I know something is still blocked.


how soon did you fly after the initial treatment?

Flew back home 3 days after the first time. Flew home 7 days after the second time. And I think I have devoloped more blood clots. I do question the long flight contributing to the blood clot problem.
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Postby kiwee » Tue Aug 10, 2010 5:42 pm

very valid concern.
i am by no stretch of the imagination an expert on this at all, been left to my own devices to research and try to understand the best program available to have this procedure done. in my mind, it makes the most sense to wait as long as possible before flying to ensure the ballooning takes.
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