Re: Digest Number 3793

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On Dec 26, 2011, at 4:43 AM, tetheredspinalcord wrote:

> Tethered Spinal Cord Syndrome

> Messages In This Digest (1 Message)

> 1.

> Seizure Activity From: Livvie

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> 1.

> Seizure Activity

> Posted by: " Livvie " livviep62@...   livviep62

> Sun Dec 25, 2011 11:51 pm (PST)

>

>

> It's been a while since I posted, but find us in a very frustrating and scary

situation. I will do my best to explain.

> My 29 year old daughter had her 5th de-tethering surgery last February. Since

that time things have gone from bad to worse. She has lost so much function, but

by far the most debilitating thing is these " spasms " that she has. They started

not long after surgery, and are getting worse. In the beginning it was the

rhythmic like movement that while was not particularly painful, being someone

with chronic pain, she would become tired and her pain would increase. When they

first began she was put on Klonopin, and 5mg of valium as needed. They stopped

for a while.

> They have over the past month started coming back. She would be transported to

the ED, get some IV valium or Atavan, and some pain meds and be good as new.

Then this past Wednesday, she had a seizure, Duke won't call it a seizure, but I

saw it. Drooling, tongue biting, thrashing, unresponsive...seizure. We were in

the car so I drove her to the Ed. They got her stable, sent us on our way, 4

hours later we were right back in the ED. They gave her the usual cocktail,

loaded her with Dilantin, and gave us a referral to Neurology, home we went.

Four hours later we were right back in there. This time they loaded us up and

sent us to Duke. The ED Dr. said he thought it would be dangerous to keep her

local when there would be no Neurologist on call.

> Duke did an EEG, and said it was not seizures. I learned while we were there

that her Primary Care felt that she didn't need to be on the Klonopin and

Valium, he took the Valium completely, and reduced the Klonopin.

> I couldn't believe that she allowed that to happen. When all this first

started they said it could be the Effexor and took her off of it. So after the

spasms stopped and she had been off of the Effexor for a while, I told her to

try titrating off of the Klonopin and see what happened. Well she ended up back

in the ED. Obviously the Klonopin was controlling them. She started it back and

was fine until now. My question is....have any of you ever experienced anything

like this before? We go in the ED and all they can say is....WOW....one minute

it's a seizure and the next it's this uncontrollable twitching. Which she says

feels like someone squeezing her spine. We are desperate any ideas you may have

would be so much appreciated. I really don't know what to do to help her.

> Thanks,

> Livvie

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