Bad News IR Update

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Donnchadh
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Bad News IR Update

Post by Donnchadh »

For those of ye following my liberation story, I got some discouraging news today.

My IR had to submit a proposal to his IRB for permission to resume doing the liberation procedure. That was almost two months ago. I called his nurse today and asked how her it was coming.

She said "it will take another 3 or 4 months."

And that assumes that it will be approved, or not sent back for more amendments.

Time for Plan B. As a progressive MSer, time is not on my side.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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NormB
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Post by NormB »

Yet another broken spoke in the wheel but the wheel is still turning albeit slower.

Are you from Canada?


Good Luck with Plan B



Take care all

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Donnchadh
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Post by Donnchadh »

NormB wrote:Yet another broken spoke in the wheel but the wheel is still turning albeit slower.

Are you from Canada?


Good Luck with Plan B



Take care all

Norm
No. Northern Illinois. Considering the few options open, I probably will have no choice but wait and hope.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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SandyK
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Post by SandyK »

You can have the seat right next to me... :)
Diagnosed 1994, Self EDSS is 6.5
Cece
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Post by Cece »

Any other options to the sitting-and-waiting? Writing to other IRs, signing up with Siskin in NY? Siskin does stents, if that's what's needed...no idea though how long that list has gotten. :( You could also approach other IRs, even if the stenting is more than they want to do, maybe a second ballooning will hold? If I ever get a treatment lead here in MN, I'll pass it along, if it'd be of use...I am sorry to hear that you're delayed.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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elyse_peace
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Post by elyse_peace »

Donnchadh -
I'm sorry to hear of your being stalled. I have been following your story. I was very happy at your first excellent results, then disappointed for you that they did not last very long.
I'm progressing like crazy and wishing that all procedures would be wonderful success stories. Reality can suck.
I hope that the info on how long it will take is incorrect, and that you don't have to wait very long.
Hang in there.
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BooBear
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Post by BooBear »

Donna, read my "Fingers Crossed" post. Maybe that will work for you?
Three veins angioplastied.  One renewed life.  
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