GRAND MAL not even enough ?!?!

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qtowngirl

qtowngirl

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Saturday they said they weren't confident enough with just the one partial and would like me to stay a third week to try and get one more. Yay. I went for it though, and really hoped I would have one between then and monday as today was lead change day and then I wouldn't have to have them put on a fourth time.
At 1:30 this morning I had a partial in my sleep (but apparently became alert enough to push my seizure button), followed by a big 'ol grand mal. Bit the shit out my tongue which I haven't done in almost a decade, that was just a nice little bonus.
But... they said that wasn't enough either. It still showed activity on the side with the lesion but it didn't give a solid focal point like the first partial did. It's anyones guess now, whether or not I'll have another one and if so will it be enough. Still in a bit of shock not only that I had a big one but that even preceeded by a partial it still wasn't good. The neurosurgeon will be in this week to discuss the surgery tho, so that will be a good opportunity to ask questions. I'm kinda bugging the doctors at this point, like 'What more do you want from me?!?! 2 partials, a g.m., day 15 in bed, four probe changes... lol work with me here!!!' :bigmouth:
 
Hey qtown,
Sorry and happy for you at the same time(you know what i mean) Pretty crap all this shit you are having to go through at the moment.But lets hope when the nuerosurgeon arrives you can get more defenite answers,sending you more hugs.................whats that 15 days worth!!! Hang in there ok!
 
Qtown,

All I can say is WOW!!? Im sending hugs from here and thinking of you. If I ever complain about 5days you have the right tell me to shut up! but you know the doctors arn't the expert here its the Neurosurgeon. He's the one who can say weather you a good candidate or if he feels any surgery will help you live a better life. I evaluated twice. First neurosurgeon said I was not a good candidate because of the activity on both sides. Then I went through the 2nd evaluation this surgeon thought I was a good candidate. He did say it may not stop them all but would get me to a point where medication and other therapy would help me lead a normal life. That was 25 years ago.

Hang in there! :bigsmile:
 
Wow. I do not have personal experience with the surgery, but it seems like you might be moving forward, would wonder about the t/c. I agree with Neil, maybe the neurosurgeon will shed more light later on when he comes in. Hang in there and hugs to you
(((((qtowngirl)))))

Mary
 
You are seriously a super hero! Staying there for 15 days! WOW~! When I had my VEEG done last year, I was there for five days. I couldnt take it no longer! I will continue to pray that you get some good answers!
 
After 15 days, I think I would have a serious case of cabin fever, and would have made a break for it. Good for you for hanging in there. I hope the neurosurgeon will be able to shed some light on what the next steps will be.
 
Well I'm home. 17 days, three grand mals, three simple partials and one complex.
My tongue is black, raw, and swollen. And I'm in a daze, to say the least. Though they still have to sit down as a panel to discuss my case, everyone preliminary feels that I'm a good candidate for surgery. Remove my left amygdala and likely part of my left hippocampus. I am now off lamotrigine and on vimpat, which they said they only put me on b/c I've made it clear I won't be ready for surgery right away. If I was having it in Jan/Feb then no need for meds but b/c I may need a year to prepare and get some things out of the way they went for vimpat. I really hope it does the trick for awhile; a bit of calm before the storm would be really nice.
This is not to say I've made up my mind 100 per cent that I'm going to go through with it, but at the same time I don't know if I can just 'live' with a lesion in my head while hoping for the best. Too young I think, should do it now while I still have lots of life left.
It's been nine years since I chewed up my tongue like this and tho I'm miserable and in agony it does serve as a good reminder of what this *!@*! disease is capable of.
I did meet the neurosurgeon and he seems pretty easy going about the whole thing, not sure if that should comfort me or scare me. He is also a vascular surgeon, which is good, he really knows his way around. Sounds like I'll get a call in a few weeks with a definite answer and plan, and also whether I have to go back for the WADA. Hope not!!
 
Gosh you've been through it all the past few weeks now! Take sometime to rest and relax. Sounds like the doctors have a good plan set for you. I hope it goes smoothly! Hang in there!
 
Wow you have been through the ringer and then some. I am so glad they have a good surgeon for you though. Relax and kudos for being super tough, I couldn't last that long in a hospital!
 
Welcome back QT!

a bit of calm before the storm would be really nice.
Click to expand...
Even better, how about no storm at all? I hope you can rest up and [ironically] recover from your hospital stay.
 
Welcome home!

Hopefully a restful time on horizon while tongue, body and spirit heal after that long run, well done! .
 
Welcome home. I'm sure it feels great to be out and the leads out of your head! Just sit back this weekend and soak it all in You've got alot of information to digest. Its doesn't make since that you have to come home from the hospital to recoup:pfft:
 
Thanks for all the pats on the back guys, such great friends.
Yep it really was a long run, so glad to be home. I didn't want to stay that long and sure didn't have it planned with work, kids, etc., but they really made a solid case for it. All the docs were positive 'more seizures would come real soon,' and as I was already strapped to the bed it seemed like the smartest thing to do. Why go all that way and spend all that time, for no results?
Thanks for the kudos MuayThai but really it goes to my boyfriend. His cot was super uncomfortable but he slept in it the whole time, and he did everything for us from getting coffee and food to doing laundry and bringing me warm blankets. I hope any of you who have to go through this down the road have someone like I did with you the whole time, it sure makes a difference.
 
Welcome home! Glad you're moving along in the process, and for having such wonderful support of your boyfriend, too. Enjoy the weekend :)
 
I'm glad they found what they needed! It sounds like you're in some really good hands!!
 
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