ICP Monitor

[April]

Hi guys,

I'm a Chiari sufferer since a horrible accident in 2003 and have had decompression and duraplasty twice (decompression in june '04, then 1st duraplasty in Oct '04, leaked CSF for 22 days then a repair surgery in Nov '04). I've been ok, gradually getting worse. seeing a new NS at the Cleveland Clinic who has presented me with 3 new possible diagnoses. 1 tethered cord - negative. 2 - pseudotumor. That's what we're checking for now. I have to have an ICP monitor for 2 days. Needless to say, I'm scared to death! I've already made the decision I want it done in the O.R. not just under a local anesthesia. Way too many bad memories to even hear anything.

I've had 2 lumbar punctures - one showed 22 mm and the other was 25 mm so he feels I probably have high ICP. (I have other symptoms) and all my Chiari symptoms are back. He did say that my doc in Pburgh did "way too much decompression - too much room". So that was great to hear. I know I'm in the best hands right now and I'm confident, just very nervous.

Can anyone give me any info on what I can expect for those 2 days I'm in the hospital with the ICP monitor connected to my brain? Thanks for any info.

God Bless,
April

P.S. We're on the verge of being approved adoptive parents (we're hoping to adopt a sibling group from Pennsylvania foster care) and I want to get better and FEEL great to be a good Mommy!!!

[Sally Girl]

My young adult daughter had ICP monitoring for four days last summer. It was a walk in the park compared to all her other surgeries. She was "put under" for the procedure. It is really a tiny hole--only requiring a couple of stitches once it was pulled out. Her monitor touched the very most outside of her brain. Nothing very invasive.

Most people say that the boredom of being tethered to the wall is the worst thing about ICP monitoring.

My daughter has Chiari, and she has been decompressed twice. She was diagnosed with Intracranial Hypertension after her first decompression. She was shunted for IH. It has been a long frustrating journey with a leaking LP shunt and pseudomeningocele mixed in.

For the best information on Intracranial Hypertension, go to:

www.ihrfoundation.org

Hope this helps!

Cheryl

[April]

Thanks, Cheryl. I'm sure it'll be a piece of cake, just wondering what to expect from someone who's had one.

Thanks!

[jadiee-x]

Hello there,
I had ICP monitoring done in september 08, due to papilledema which indicated intercranial pressure build up due to my shunt not working properly.

The operation its self to insert the monitor takes about an hourish, start to finish.

Well i came round from the op, i actually had to lift my hand to my head to see if there was anything there as it didnt feel like it. But there was of course, a wire thing popping out. Was taken back to my room in my ward and the wire was then connected into a laptop and the pressure is just measured all the time, you can walk around with the laptop on some metal contraption thing with wheels (sorry cant think of the word!) and the wire can be disconnected from the laptop when needing to go to the loo etc.

I remember having a small headache a little while after the op, but im not too sure whether that was because of the operation form the ICP monitor or whether it was the beginning of my shunt malfunction. I only experienced the icp monitoring for about 7 hours before i went into a coma (not due to the icp monitoring, so dont worry! :) ) I was then taken into further surgery for a shunt revision, and a small brain bleed.

But what i remember of the icp monitoring in itself is that its fine, it may be for a number of days, or it may well be only for a couple of hours until the doctors can see there is deffinate pressure or problem etc.
As someone else mentioned, the worst thing about it is being tied down to the thing, and when lying down not being able to turn onto where the wire is.

Good luck :)