I have been liberated!!!!!!!!!!!!

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

Postby Salerdog » Tue Mar 23, 2010 9:40 pm

Don,
Fantastic journal on your procedure. My wife has SP, can't walk, and needs my help on all transfers chair, bed, shower, can etc.
Your log restores hope. Any idea on what your procedure cost? Also any dollar estimate on the re-steno if needed? I am from Canada and they are dragging their ass on the operational side. So I am exploring options. Thanks, Bob
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Postby QueenMum » Tue Mar 23, 2010 10:39 pm

Thanks for sharing your experiences.

I'm a newbie here and can hardly wait to get the procedure done. It's pioneers like you who share that help make the decision to go forward a little easier.

The one thing that caught my attention, and Rose's too I see, is that we should probably take a little more time to recover from the procedure. I imagine that FINALLY feeling good & having some strength & energy is
irresistible.

I hope to feel as good as you when it's my turn.
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Postby BooBear » Wed Mar 24, 2010 4:10 am

Well, I understand your reluctance (and the IR's reluctance) with all the contention in the medical community over CCSVI and this procedure. If he does choose to accept new patients, please let me know- I can give all the detail he'd like!

I am currently on a clinical trial for oral cladribine in conjunction with Avonex. My last MRI shows two new lesions in the past six months, which was disheartening- the fact that I have had no new relapses in the past six months makes the two lesions scary. I am facing BetaSeron next if we can't get this beast under control. Sucks.

When I learned of CCSVI, I was fascinated and flabbergasted at the same time. It's hard to overlook the evidence, isn't it? Thank you for posting your experience with the procedure as candidly as you have. It really does help the rest of us!
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Postby Donnchadh » Wed Mar 24, 2010 5:17 am

Salerdog wrote:Don,
Fantastic journal on your procedure. My wife has SP, can't walk, and needs my help on all transfers chair, bed, shower, can etc.
Your log restores hope. Any idea on what your procedure cost? Also any dollar estimate on the re-steno if needed? I am from Canada and they are dragging their ass on the operational side. So I am exploring options. Thanks, Bob


I haven't received any bills or statements yet. I am on Medicare, but I don't know if they will cover this or reject it as "experimental."

The Plavik 30 day supply has a list price of $172.

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Postby ozarkcanoer » Wed Mar 24, 2010 6:30 am

"Hot head" symptoms !!! Me too. When I try to explain them my neuro just looks at me like I am crazy. I put frozen ice packs and ice cubes on my head and neck to help. Maybe I'm not so crazy. It is a terrible symptom. I hope I get the testing soon at BNAC. I have been waiting so long, :(

Anyway... you made my day by mentioning "hot head".

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Postby Donnchadh » Wed Mar 24, 2010 8:41 am

ozarkcanoer wrote:"Hot head" symptoms !!! Me too. When I try to explain them my neuro just looks at me like I am crazy. I put frozen ice packs and ice cubes on my head and neck to help. Maybe I'm not so crazy. It is a terrible symptom. I hope I get the testing soon at BNAC. I have been waiting so long, :(

Anyway... you made my day by mentioning "hot head".

ozarkcanoer


You might want to try a herbal based "supplement" called Vinpocetine (20mg). It did help my head feel cooler. But remember it's not a cure for venous stenosis. I am planning on taking it again after I am through with Plavik.

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Postby moochsid » Wed Mar 24, 2010 8:48 am

Hello
I put the 'Hot head' topic under the General discussions heading a while back but got minimal response and so am glad it's surfaced here confirmed as a shared phenomenon. Apart from in hot weather when ice packs have to be applied it subsides only when my partner is lying down which I presume supports the vertical blockage of IJ theory. Well, will know hopefully know more this time next week when we're in in Katowice
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Postby bmk1234 » Wed Mar 24, 2010 9:58 am

ozarkcanoer wrote:"Hot head" symptoms !!! Me too. When I try to explain them my neuro just looks at me like I am crazy. I put frozen ice packs and ice cubes on my head and neck to help. Maybe I'm not so crazy. It is a terrible symptom. I hope I get the testing soon at BNAC. I have been waiting so long, :(

Anyway... you made my day by mentioning "hot head".

ozarkcanoer


I used to have a hot head, once I started using LDN, I have not had it since. ??
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Postby capegirl » Wed Mar 24, 2010 10:52 am

Thanks for sharing your detailed experience. It gives me such hope to hear that a doctor is willing to take a chance and try something new as it relates to MS. I have SPMS and live in Canada, we do not have doctors or a medical system here willing to do this yet. I hope other doctors read this and read if your experience and of your wonderful and positive results. It sends chills through me just reading it and brings me to tears that maybe someday we can all experience the "liberation".
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