am I SP"MS", or did CCSVI procedure work?

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

am I SP"MS", or did CCSVI procedure work?

Postby 1eye » Wed Oct 05, 2011 12:39 pm

I have had many significant improvements since August 2010. This does not happen for over a year, either to a person with SP"MS", or a person suffering from placebo delusions. Even if I had the "placeboes", I have had relapse of some but not all the improvements. Plus I am still, after a year, having more improvements. So which is it, Mr. Science? If I am just relapsing-remitting you would think I could get a prescription. If I could find a neurologist who would even talk to me, that is.

You would think by now, with the number of people who have had measurable improvements who have been told they had progressed to "SPMS", (this happened to me years, and many neurology examinations, ago) either the CCSVI procedure would be accepted, or those people would demand re-diagnosis, and to be treated as relapsing-remitting, with DMDs if they had the insurance. In fact, I think providers both private and public no longer have a leg to stand on if they refuse both the DMDs and the procedure, to people like me.
Last edited by 1eye on Wed Oct 05, 2011 12:51 pm, edited 1 time in total.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Re: am I SP"MS", or did CCSVI procedure work?

Postby munchkin » Wed Oct 05, 2011 12:45 pm

You are one lucky guy, 1eye. Doesn't sound like you're SPMS to me. But, neuros are a different breed. Just had my neuro tell me that there aren't any valves in the IJV's.
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Re: am I SP"MS", or did CCSVI procedure work?

Postby ikulo » Wed Oct 05, 2011 6:30 pm

Am I SPMS or did CCSVI not work? I've had nothing but increased disability since last August when I had the procedure. Frustrating to not know what's going on.
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Re: am I SP"MS", or did CCSVI procedure work?

Postby Cece » Wed Oct 05, 2011 7:05 pm

@ikulo, are there any local CCSVI IRs who could check you out? Increased disability after a procedure could mean the procedure did nothing (and MS was going to get worse anyway) or it could mean there was a complication due to the procedure and the veins closed up worse and that led to increased disability, as has happened to some, or it could mean that something was missed in the procedure (since an estimated 40% of stenoses are missed when IVUS is not used).

1eye, whether you are SP or RR, there is no arguing with significant improvements. It is not in the nature of SP to have improvements, so perhaps that does bump you back into an RR course. Or we need a new label for our new course: instead of secondary progressive, it is secondary regressive disease, where the disease regresses away.
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Re: am I SP"MS", or did CCSVI procedure work?

Postby Dovechick » Sat Oct 08, 2011 2:41 am

From Ella's experience (SPMS) it seems that it takes time for some of the improvements to show up. I include stability of the condition in the improvement category as she has not had stability of this kind since she was diagnosed. I think what Cece says is very valid, IVUS reveals many problems that were not obvious in either doppler scans or venoplasty. Also worth noting that Donald Reid, the surgeon carrying out the procedures in Scotland, has found that a significant number of RRMS and SPMS patients had azigous vein involvement which is commonly not identified unless you have a diagnosis of PPMS primarily because many IR and surgeons don't look for trouble there unless you have a PPMS diagnosis.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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