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Feedback for veeg, seizure monitoring!! Please share your experience!!!

Sat, 11/15/2008 - 12:03

Hello,

I am a patient volunteering at my hospital on a team striving to improve the safety in the seizure monitoring unit.  Our work is published at the AES annual meeting.  The information gathered helps hospitals all over the world make the VEEG monitoring unit a safer, more informational experience for everyone involved! Please share with me your experience in the hospital, and the things you would have liked to see done differently, or the things you would have like more information about.

 Thank you for your time

Comments

Re: Feedback for veeg, seizure monitoring!! Please share your ex

Submitted by Br0 on Tue, 2008-12-09 - 13:43
Hey Mama-Mia. Ive done the Video EEG study twice now, and frankly, I hate it. It was less bad the second time, but having to remain in bed for five days or so is terrible. Crucial elements in making patients feel better about the procedure would probably be: wireless internet, TV's in the room with video ports to allow for game consoles and/or dvd players etc. the entire thing is boring as all hell, not to mention depressing and humiliating. (at least for me) One of the few saving graces was the nurses and medical staff. They were ridiculously kind and caring. waiting for a seizure to get the ictal SPECT was pretty crappy. the first visit I stayed for 6 days, had no seizures. go figure. Second visit, I was there for 3 or so, had a seizure the first time the radiologist with the technetium contrast were there. Thats about the extent of my experiences and opinions, as far as I can remember.

Re: Feedback for veeg, seizure monitoring!! Please share your ex

Submitted by littlelulu on Wed, 2008-12-17 - 15:06

Hey,

 

I'm currently in the seizure monitoring unit in boston at Massachusetts General Hospital. I came here yesterday and they told me I'd probably be here for about 3-5 days depending on how things go. As you can see we have wireless internet available, cell phone usage and TV's in rooms. I agree that the leads on your head, the way they wrap your head and the glue are all negatives...but I guess the only thing that bothers me the most is the head wrapping...my whole head is wrapped in white gauze..I feel like a big Qtip...lol. 

The other thing I wish is that I could at least get some exercise..even if its like twice a day doing a couple laps around the unit...I just feel so cooped up in here. When I've had seizures at home I'm doing normal activities etc...so my hopes are that I'll have some sort or seizure while i"m here...they have started reducing my meds but not enough to cause me to seize...at least I dont feel that way. They are making me stay awake till 3am each day and waking me up by about 7am...but its so hard to sleep here anyways that by 3am I've gotten my second/third wind and I'm past the point of being tired..its frustrating to say the least. 

I'll report back and let you know how I make out. 

Hey,

 

I'm currently in the seizure monitoring unit in boston at Massachusetts General Hospital. I came here yesterday and they told me I'd probably be here for about 3-5 days depending on how things go. As you can see we have wireless internet available, cell phone usage and TV's in rooms. I agree that the leads on your head, the way they wrap your head and the glue are all negatives...but I guess the only thing that bothers me the most is the head wrapping...my whole head is wrapped in white gauze..I feel like a big Qtip...lol. 

The other thing I wish is that I could at least get some exercise..even if its like twice a day doing a couple laps around the unit...I just feel so cooped up in here. When I've had seizures at home I'm doing normal activities etc...so my hopes are that I'll have some sort or seizure while i"m here...they have started reducing my meds but not enough to cause me to seize...at least I dont feel that way. They are making me stay awake till 3am each day and waking me up by about 7am...but its so hard to sleep here anyways that by 3am I've gotten my second/third wind and I'm past the point of being tired..its frustrating to say the least. 

I'll report back and let you know how I make out. 

Re: Feedback for veeg, seizure monitoring!! Please share your ex

Submitted by Mama-Mia on Wed, 2008-12-31 - 13:26

I hope everything has worked out for you!  I felt the same way about my meds being decreased.  Like they were doing it too slowly, when all I wanted to do was get it over with so I could go home.  I am pushing internet availibllity right now and the more people that write in about it the better, so thank you!!  :)  Please let me know how it turned out for you!!

 

Happy new year

I hope everything has worked out for you!  I felt the same way about my meds being decreased.  Like they were doing it too slowly, when all I wanted to do was get it over with so I could go home.  I am pushing internet availibllity right now and the more people that write in about it the better, so thank you!!  :)  Please let me know how it turned out for you!!

 

Happy new year

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