Hi,
I am going to be going into UCLA for a few days and enter the "Phase I
Telemetry" testing. Basically I am going to be strapped to a machine
for a week while the docs videotape me having seizures (by taking away
my meds).
Has anybody ever done this before? I am scared enough about the
potential to go into surgeory but to face seizures everyday for a week
doesn't sound any better.
Can anybody here tell me about their experiences going through
telemetry testing? Was there any success and was surgeory necessary?
any info would be of great help. also what did you guys do to keep
yourselves busy?
thanks
Chris aka Rewired - 22 Feb 2005 23:22 GMT
I had my testing done at UCSF. I was averaging 20-30 seizures aweek.
Spent a week in the telemetry unit and didn't have a one. LOL After 8
days they got what they wanted. :}
One of the best feelings of the testing is the person that comes in a
lubes the electrodes as they itch something firece. I had a "sitter" a
person that will activate the cameras if I had a seizure, very nice
people and loved to talk.
You'll most likely have med students come in and talk to you. I gave
them all my, "Your not god" talk, boy they got out of there in a hurry.
All in all, they pinned my seizures to my right hippocampus and took it
out in 1999.
Relax and take a few good movies.
Chris
CyberCafe - 23 Feb 2005 00:37 GMT
> I had my testing done at UCSF. I was averaging 20-30 seizures aweek.
> Spent a week in the telemetry unit and didn't have a one. LOL After 8
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>
> Chris
I got a kick out of reading your message, particularly the med students
part.
Barb
turbinado - 23 Feb 2005 01:24 GMT
> Hi,
>
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>
> thanks
I had that done in December at Vancouver General Hospital. I was in the unit
for 7 days - on the 6th day (2nd day with no meds), I had 8 seizures. They
only needed to see 3 or 4. Apparently some people are in there for 3 weeks
without having any - others have enough on the first day. Having that many
seizures in one day really took alot out of me - I'd never had more than 2.
I still don't feel quite up to speed, 2 months later.
In my case, the testing was successful and the surgery is scheduled for
March 3rd - they are removing a piece of my right temporal lobe.
Boredom (and having to stay in bed) was the worst part, but having my
portable MP3 player was a lifesaver. Music makes the time go by so much
faster! I mostly read books and watched TV to keep busy. I lucked out
because TV costs $13.50 per day, but after I paid for one day, they forgot
to de-activate it. When she discovered the mistake on my last day, the tech
said I'd have to pay and I said fine, send me a bill - I don't keep that
kind of cash on me. So she said never mind, as long as I didn't tell anyone.
(I guess she'd have been in trouble.) I considered it a Christmas present
from the hospital.
Chris aka Rewired - 23 Feb 2005 02:03 GMT
hey march 3 is a good day. That is my b-day. :}}}
Toes and fingers crossed. the first 2 weeks were the worst for the
headaches and pain. After that it got much eaiser and by the 6th week I
was back to work. wish I would have stayed out a few more weeks though.
> > Hi,
> >
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> (I guess she'd have been in trouble.) I considered it a Christmas present
> from the hospital.
Dave ???? - 24 Feb 2005 03:31 GMT
Howdy!
I had mine done at the University of Rochester (NY) Medical Center.
They call it "Long Term Monitoring" here.
The first one wasn't precise enough so they did it again. The second one was
"Invasive Monitoring" where they place the electrodes directly on the
surface of the brain instead of on the scalp.
Do they provide monitors for you or do you have to provide your own? When I
had mine done there had to be another person around all the time just to
make sure that all of my obvious seizures got flagged on the videotape &
eeg.
I had a button that I pushed whenever I felt a seizure coming on. This
marked the eeg and videotape. If I had a seizure without any forewarning,
the person in the room with me pushed the button.

Signature
Dave ????
http://www.howdydave.com
> Hi,
>
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>
> thanks
Chris aka Rewired - 24 Feb 2005 23:21 GMT
Dave,
I could have a friend come in or they would provide one. My brother and
some co-workers sat sometimes but mostly had the volunteer sitters do
it. I want to volunteer in the telemetry unit but am told they don't
have any volunteers.
That is how it was for me too. Mine happened to be nocturnal ones and
was lucky to have the sitter there.
U of R? I went to SUNY Brockport and did my internship at Sunrise
chemical dependancy center. Was at the old St Joes Hospital, I think.
turbinado - 25 Feb 2005 00:49 GMT
I didn't have a human monitor, just the video camera and the EEG - I was
supposed to push a button when I felt a seizure coming on, but didn't get a
single one out of 8. :(
> Howdy!
>
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> >
> > thanks