Goin in Dec 10 for Invasive EEG and possible Temporal Lobe Rection :einstein:

[AmandaLynn]

Hi there everyone I'm wondering if I can get some input from those out there that have gone through the invasive EEG, and/or completed a Temporal Lobe Recection?
I've gone through all other testing, I'm set to go in to the Hospital Dec. 10th and I'm just now starting to get a bit nervous...might be because some olf my family is freaking out but I'm trying to keep my distance from that.
Anyway, I was just hoping to get some firsthand reports on waht to expect/not expect that I havent read in books and reports.

Thanks for any input!

TTFN ~AmandaLynn~

[Nakamova]

Hey AmandaLynn --

I haven't had an invasive EEG, but my cousin with Parkinson's did. He actually played the banjo during it. He wasn't in any pain during the procedure, but he had a really terrible headache for a few days afterwards, and it took a few weeks for his scalp to heal.

There are CWE members who've had Temporal lobe surgery -- I hope they'll chime in here to let you know what to expect. You're doing the right thing by asking questions and preparing yourself.

Best,
Nakamova

[Endless]

Hi, AmandaLynn,

Welcome to the forum.

I haven't had an invasive EEG or a lobe resection, but I wanted to chime in and show you that we are here to support you. There are several folks in here who have had lobe resections, and they can share their experiences with you. I think the majority of people who have had it are happy with the results. A few, not so happy due to after effects.

I agree with Nakamova. The more information you get, the better. You'll be better armed to make the best possible decisions for yourself. Sometimes medical decisions aren't just medical. They also need to be balanced with your life goals, level of risk adversity, feelings, etc. The docs just look at the medical side of things, so it's up to you to integrate all the other stuff into the decision making. And without being fully informed about the medical stuff, too, it's really hard to do that.

I'm going to be thinking positive thoughts for you. Will you let us know how you are doing?

[alivenwell]

It's my understanding that some inflamation will occur. If this helps reduce meds, it may be well worth your time. Those meds have nasty side effects with the extra damage of an insulting high price as if we were deliberately binging on drugs for recreational purposes.
It's been suggested to me also. And it's a very tough decision. Fewer or no seizures vs. a potential for remaining scar tissue that aggravates other seizures. I've heard that medications, although reduced, will need to be continued anyway for most who have had surgery.

[RTL]

AmandaLynn,

I didn't have the invasive EEG, at least not as a separate procedure, but I did have TL surgery nearly 8 years ago and have outlined my experiences here:

users.eastlink.ca/~kehoe/

Kevin

[AmandaLynn]

Endless,

Thanks for the positive thoughts, I'll need them in the days ahead (if all goes as planned). I will keep checking in here as things progress, right now I'm just hoping that the Surgeon doesn't delay everything again. I was set up for Nov.1st, and then he decided to leave the country for a month! Soo I'm still a little nervous that Dec. 10th might be delayed for some reason.
I'm getting myself mentally prepared either way because the seizures are still coming, and life on the couch just doesn't work for me :/ So while I'm here I'm reading and researching all angles I can think of.

[Cint]

Hi Amanda,

I had a left temporal lobectomy 20 years ago. I also did have to have the invasive EEG done. I don't remember much pain. I was taken off all medication and they kept a close eye on me for seizures. I was in the hospital for 10 days so they could record 3 generalized seizures. I also remember them putting bunches of pillows around my bed after my first seizure. I guess it was a bad one.
I had plenty of things to keep me busy in the meantime. Here is another website that will explain it all better:
http://www.epilepsy.com/EPILEPSY/SURGERY_BRAINMAP

Good luck!

[josieb]

Hello AmandaLynn! I had the invasive EEG done in November of 2005, and from what I can recall, it wasn't bad at all. I was completely taken off my meds and had 5 or 6 partial complex seizures in a period of 2 days. Then, in late February of 2006, I had a Left Temporal Lobectomy.

As noted by others, make sure to take some things to do (books, puzzle books, computer, etc.) with you while having the testing done, as it can get boring.

I wish you good luck!!

[jordanvp]

I had invasive eeg in 2008. just my luck, my seizures vanished during the week I was hospitalized there, so they actually had to induce seizures by lowering my doses while i was there. Not the most pleasant experience but all in all it wasn't too bad. Not nearly as bad as the two weeks i spent in the hospital after my temporal lobe resection.
Yes, I'm a guinea pig.

[AmandaLynn]

So my seizures are acting up MORE and MORE as the weeks go by. I've had to call into my neurologist doc's office after hours to see if I could get some help over the weekend cause they close shop on Thursdays. The oncall doc got back to me right away which was good, he reccomended Clanazopham 2x a day for 7 days....MY neurologist doc has given this to me in the past to use as needed for sleep problems .
So I'm trying this Clanazopham .5mg 2x day, so far it has killd out all the seizures I've been having but I'm a Zombie! I'm going to call my neurologist Doc and talk to her about it on monday (see if she agrees with the added Claznopham)
< I am on Zonegran 350mg day, Trileptol 300mg day, and Lamictal XR 275mg day. > and now the added Clanazopham .5mg 2x day for 7 days.

I guess this post was just an update of my current frustration more than update about my upcoming EEG/Surgery.

[bella0809]

Hi AmandaLynn,

I had the 2 stage surgery for left-temporal lobectomy in December 2005. I am soon to be seizure-free for 5 years and I am 100% medication-free since March 2010. I chose to avoid telling most people I was going to have surgery until a week or so before because they are worse than we are about the surgery. As far as risk-reward, they don't see it as we do. I found the first surgery to be uncomfortable, but passed on any pain-killer injections. The second surgery was quite painful and I opted for the pain-killer injections. Make sure you have a prescription for pain-killers when you leave. I have to say the hospital staff was quite kind and I imagine thankful that they are not the patient in this case. I'm curious as to your surgeon postponing the surgery. Where are you having it done and how many surgeries has he done? If you have any questions, please let me know.

Ann

[AmandaLynn]

So tomorrows the big day! getting up at 3 am to check in at 5:30am yikes! Its really gonna be a long week ahead so any prayers or positive thoughts would be appriciated

Update soon~Amanda Lynn

[epileric]

Good Luck A.L.

Wishing you the best.

[Meetz1064]

Amanda Lynn. Let us know how it goes, will you? We'll be thinking of you......

[bella0809]

AmandaLynn,

Our thoughts and prayers are with you. When you feel up to it, let us know how you're doing.

Ann

[CQ:)]

Good Luck Amanda Lynn,