Tomorrow Is My Big Day

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Kate

Kate

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My mom and I are at our hotel and we are ready to get up bright and early to be at the hospital at 7:30 AM (which is 6:30 AM our time - whew.) They will be running all sorts of tests at IU Med Center and we are praying that they figure something out.

We went to the two hospitals I have been in and out of and now have the hard copies of all the MRIs and scans I have had done in the past months for the doctors to study. I found out my neurologist has never even seen a hard copy of ANY of my tests, she has only gone on the results of them. I'm interested to see what actual neurologists have to say after looking at them.

I have NO idea what tests they are doing on me. I'll tell you all about it after I get out. I also don't know how long I'll be there.

Sorry I haven't posted any updates. I just started online school, have been very busy, etc. I hope all is well with you all. Everyone on this site is always in my prayers!
 
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I hope you get some decent answers Kate.
Don't forget your list of questions.
 
Hi Kate,

I wish you good fortune in finding some answers!
 
You have my prayers and best wishes.

And my joy that your mother is with you to go get you "real" food while you're in the hospital !! :)
 
(((((( hugs )))))) and Good Luck

and I agree with Nancy - hope they
have REAL FOOD there!

Hope it all goes well!
 
Home Already! - Update

So, I'm home already, and sadly with no more answers than I had before I left. All they decided to do was further testing.

They are going to take me off ALL seizure medications and monitor me in the hospital for four days. They are supposed to call sometime in the next two-three days to schedule this hospital visit. While I am there I will have an EEG the entire time and they will look for any seizure activity.

I have my ankle surgery on Feb 13th now (was in Jan had to move it to Feb) so we are hoping we can get me in the hospital sometime the during my recovery period. As soon as I find out the dates we are going to try to see if they have a room open at the Ronald McDonald house because my mom can't afford to stay in downtown Indianapolis close to the hospital for four days.

Anyway, they said I can do all my normal stuff while I'm in the hospital. I can take my laptop and they have wireless internet so I can do homework. I have a few friends in the Indianapolis area, so if they can get used to seeing me all hooked up to an EEG (I don't mind lol) than I'll at least have some visitors.

I'm still nervous though. Last time I was in the hospital it wasn't quite 4 days and it felt like weeks.. I'll update you all again as soon as I know the date I go in.
 
Hey, we'll all send you emails to keep you busy. Your course work should also be useful there. Frankly, my seizures are best controlled when I am busy and out of trouble.
Perhaps they're trying to re-create a seizure or occurrence to really narrow down exactly what your medical problem is at this time. It's great that they're being very thorough.

I'm a math major. So, if you need any technical support, feel free to email me.

I can sympathize with your hospital stay since I spent half of my childhood in a hospital. It DOES feel like a really really long time. All of my childhood stays in the hospital were not related to epilepsy. I made the best of it and did wheelchair races. They also had a room full of art supplies which really helped me. I love to draw.

Best wishes!
 
Hi Kate -- I bet that stay in the hospital (which is what I was hoping big time you were having now) will be the video EEG. It's sure no fun but it's a wonderful learning tool for the neuros looking at your brain. :)
I hope you get it SOON.
 
Hi Kate, sometimes, the absense of a result (or determination) is still a useful bit of information (eliminating possibilities). I hope your next round of testing is more fruitful.
 
Good luck Kate. I spent 4 or 5 days in hospital without meds to provoke a sz. It wasn't fun but it was so nice after 39 years to finally find the cause of my E. Hopefully you'll learn more about it after this visit.
 
Thanks for the support! I probably will need math help.. hehe. I am HORRIBLE at Algebra! I just don't get it.

Yes, what they are doing is a video EEG! I don't know what it is really, can someone explain it to me or give me a link explaining it?
 
For me they took me off of all my AED's & left me in a bed hooked up to an EEG with a camera constantly on me. They did take me out for various tests like an MRI & various neuro-psych testing then it was back to the bed.

After that they'd given me an appointment with my neuro who told me the results.
 
That is what it was like for Rebecca also. She was wired up... they do have to use a stronger glue... and she sat in bed, watched DVD's, chatted on her laptop, took pictures of herself with the wires coming out of her head, and had bad hospital food. She could get up to go to the bathroom, but she had to haul the equipment in the room with her. She didn't walk around because they wanted her infront of the video camera during the visit.

I got to sleep in a chair...
 
Interesting. How long was yours? And how long was your daughters? They were going to do a three day one for me but than they decided to do a four day one.

I don't know if my mom will be allowed to stay with me or not.. we were planning on having her stay at the Ronald McDonald house near there. But that's only if there is a room open. It sure would be nice if they let her stay with me, I know I'm almost 20.. but still, I'll be freaked out alone at night.
 
Mine was supposed to be 4 days but I had a sz on the 3rd day so they said I could go. Problem was that I was in a different town & had to stay until after the neuro appointment. I talked the nurse into letting me stay an extra day.

Also remember to bring a mask or something to cover your eyes because they kept the lights on at night for the camera.
 
Rebecca's was less than 24 hrs.. I think it was only to appease me, since the neuro team at UCLA already had their mind made up that it was PNES.

They didn't ask that it be around her TOM, even though I told them I had noticed that many were clustered at that time. They also did not ask if there were any other natural triggers that I had noticed.

You have a good neuro to want a 4 day test. I think she can request to stay with you. They don't usually have a problem with this.
 
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