Hi, my neuro is discussing the possibility of trying long term video EEG monitoring at UNL. Have any of you had this done? Was it worth it? What was it like? I'm scared of going through more tests
I’ve done 4hr - 7 days VEEGs . I don’t know what their meaning of long term is , but there is nothing to fear with EEGs.
You will probably be staying at a seizure care unit . Through my experience I had my patient room and there was a leisure room where I can visit with others , play games , watch tv and eat if I wanted. In fact the nurses and doctors didn’t want us in our room all day . They wanted to see us move around and socialize with others.
During the long stays during the EEG they will start with you normal med dosage for the first day or two, then they will slowly reduce your meds day by day . They want to know what your seizures are like . If they can get a large seizure out of you , that’s a big PLUS.
Before your day to the hospital, you may want to prep yourself for things you may want to bring, while in your room. Then you have something to do.
Things like...
Radio
Puzzle books
Playing cards
Reading Books,
Your iPhone or iPad
And ect
They will have eyes 👀 on you 24/7 . There will be video cameras all around the unit, plus the EEG monitors that will alert them if you go into seizures. You’ll probably be checked on so many times a day by the nurses and your Dr. may pop in now and then.
The only eeg i ever had was not done correctly and i told them that if anything happened to me my friend would make sure they would be sued. A proper eeg is done by medical monitoring and slowly weaning you off of your seizure meds to induce a seizure and have the monitors catch what part of the brain your seizures are coming from to beable to better treat them. If your medical team does as mine did and just drops you off of your meds, in an attempt to speed the process up, threaten to sue them for malpractice.
I’m greatly happy that it worked out. I also had my experience with the brain surgery. I still have seizures, but before the surgery, my seizures were severe. After it the seizures became mild and moderate. It was overall worth it.
I hope your surgery improves you Epilepsy living.
I did it!!! They did an Seeg. So, I had surgey to put in all those electrodes. They just stopped my meds!! But, in the days I was there they said they had several and know where to do the surgery to remove the damaged area. Haha I'll be brainless=) Thank you for your reply. It helped greatly!
I have had it done many times. There is NO need to bee scared. The only discomfort is they have electrodes glued to you head. I believe it is worth it. If your doctor catches something he will be able to narrow things down.They will probably try to bring on a seizure while you are in the hospital to catch it. Take something with you to entertain yourself while you are in the hospital,