Thoughts on CCSVI-New Member

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

Thoughts on CCSVI-New Member

Postby Tapsteel » Sun Nov 21, 2010 2:31 pm

Hi everyone, I just joined. I have RRMS and have been on Avonex for roughly 10 years. My grandfather had it as well and wonder if my mother, who has passed on, had it too, given the symptoms she displayed.
I first noticed a vision problems and now have some numbness and an unsteady gait.
I decided to enroll in this forum because of my intrest in CCSVI and learning of Mahir Mostic's death from stent clots and blood thinners.
I also recently attended the recent program about CCSVI in Albany, N.Y. put on by the Albany Vascular Group, and had high hopes for the procedure. I still do, but my enthusiasm as be tempered by the recent death.
I learned in Albany that the system which carries the blood is a complex one and the work with CCSVI is just at the beginning stages. Although there has been some successes, the main point I hear is that more controlled studies need to be done.
I often wonder if Iron buildup is the source ms problems, might there be positive results using chelation therapy to reduce iron?
Best wishes to all and I'm looking forward to good things.
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Postby Cece » Sun Nov 21, 2010 3:02 pm

Welcome! :)

For iron build-up, yes, there have been many discussions about chelation. I personally use green tea supplements. There is some research to support that they can chelate across the blood brain barrier.

But for myself, I am not sure that iron build-up is the biggest problem. My main issue is fatigue -- really bad fatigue -- and I'm thinking I'll see some relief once my bilateral jugular obstruction gets taken care of.

I agree, the recent death is a real blow. When I first joined here, it was not long after the events at Stanford. Since then, we haven't had another report of a stent migration and emergency heart surgery, but that doesn't mean it couldn't happen again. Proceed with caution, avoid stents, avoid overseas travel, is what I took from it.
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Postby Tapsteel » Sun Nov 21, 2010 3:11 pm

Thanks Cece.
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Postby Interrupted » Sun Nov 21, 2010 3:40 pm

Hi and welcome Tapsteel :D

I've been using a natural chelation method for heavy metals and toxins for about 2-3 years now, I feel it does mildly help me and I wouldn't stop it but it definitely hasn't stopped the progression.

Re: the recent sad death, it is one of two cases relating to blood thinners out of more than a thousand now (if anone has as up to date estimate?) and not the actual surgery itself. I feel the best thing to do if you are worried, is read up about the exact cause and why he needed a stent, read into the procedure, what's needed and why, and draw your own conclusions as to how comfortable and safe you feel with it and how you feel about stents. We all really do have our comfort zones and ultimately have control of what we will and won't agree to xx
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Look up Grench Guiana in thisisms

Postby Gordon » Tue Nov 23, 2010 9:38 am

Hi
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Postby Tapsteel » Tue Nov 23, 2010 9:51 am

Hi Gordan and Interrupted and thanks for the posts.
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Postby soapdiva884 » Tue Nov 23, 2010 9:52 am

Hi and welcome, this forum is full of great info. Sit back, grab some coffee and read away!
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Postby CCSVIhusband » Tue Nov 23, 2010 9:57 am

Welcome tapsteel ... just to warn you there are about 5 "skeptics" on this board ...

Good luck, and remember, read the research into all of what CCSVI is ... there's a lot of really good stuff. Don't get caught up in the bickering...
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Postby Tapsteel » Tue Nov 23, 2010 10:06 am

Thans for the heads up and for the welcome CCSVIhusband.
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Postby Cece » Tue Nov 23, 2010 10:51 am

Interrupted wrote:Re: the recent sad death, it is one of two cases relating to blood thinners out of more than a thousand now (if anone has as up to date estimate?) and not the actual surgery itself.

the first was blood thinners (according to coroner), the second recent one was as far as I can tell due to a combination of lack of timely and appropriate follow-up care in Canada and the use of poweful thrombolysis clot-busting agents which is a different class of medication than the more common blood thinners that we are all subscribed. :(

Welcome, sorry about the infighting, it happens, but this is still a good place to discuss in depth!
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Postby jimmylegs » Tue Nov 23, 2010 1:41 pm

welcome tapsteel please enjoy the reading material and personal support available from the folks gathered here :)

i am amazed that TIMS contributors would welcome a new member by throwing the worst of what TIMS has to offer in their face.

tapsteel this is a good forum by and large. i am locking this thread to prevent any additional personal attacks from polluting your welcome to TIMS.
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