Can't go thru it again!

[Meggy]

I have severe uncontroled epilepsy. From that about 7 years ago I had a severe head injury seizing and falling resulting in a tremendous loss of function, most of which I got back, and 3 surgeries on my brain. Two right after I was injured, the 3rd 2 years later when scarring from one of the injury sites started giving me trouble.

Well, I'm having the same kind of trouble again. The last 3rd surgery was an emergency so not much testing was done but this time it's starting slower and a lot of testing is being done and so far the results are very dismal, discouraging. I fear I'm going to have a 4th surgery recommended and I really don't think I can go through with it. Plus I'm being told I may loose some function but may have to. I'm so darned trapped with this situation it makes me incredibly angry and scared witless. On the other hand I know this problem is worsening, I know I couldn't live with it before. I have no options I feel I can emotionally handle. I don't want to talk to my husband too much about it because his heart status is very precarious, I don't want to load him up although he has a fairly good idea what's happening, he doesn't know how jittery it's making me. I keep looking around for a comfortable answer and running into walls.

I don't know what I'm asking. Maybe I'm just venting.

Meggy

[Dave777]

Hi Meggy, you have been so strong with all that you're going through.
I hope it gives you strength chatting to your friends on here.

Dave x

[ceecee]

hi meggy, i think you are one very brave lady!!!i suppose you have to weigh up the pros and cons of this operation,but whatever you decide to do,will be the right choice!!i think that anyone in your position would certainly feel the same!!!do take care and let us all know how you get on.
thinking of you
rachel x

[Meggy]

Thank you Rachel and Dave for your kind words of confidence in me. Strange how much better that makes me feel. Yes, it does help to post here. This is a topic people in my life don't want to seem to want to talk about with me. I do feel undersupported but I know too this head injury I had 7 years ago seems to go on and on for them. I wonder if they ever think how it feels to me tho.

I had another test since my first post that "mapped" the circulation of the scar so at least I know that now. It's not good news but for me not knowing is worse. I'm getting scheduled for another test after that which should tell the neurosurgeons what if anything the brain tissue is responsible for they'll have to remove or at least optimally will remove under the scar. They know now I'm having constant epileptic activity in that area but exactly where, they need to find out to remove the epileptogenic cells (ugh). The fear for us all is that it is a part of my speech/writing area but it's very individual in each person where it's located I think and they feel now they won't have to go too deeply (shudder).

I have an appointment with both the neurosurgeons and have many questions. My problem is that my muscles start firing, twitching, in my lower extremities each day late afternoon then move up until my whole body is twitching. About a month ago my legs started shaking at the same time so much I have to lay down and I'm very lethargic. This lasts about 3 hours but that time period is lengthening. When they operated on me before it started with this and advanced to constant twitching/shaking in 4 weeks and I was working on a research vessel, of all things, and was air lifted to a hospital for emergency surgery. I remember then feeling huge relief someone was doing something. I was only partially conscious by then. They cauterized as much circulation from the scar to the brain as they could but couldn't get it all and now it's worsened. I know this will continue to worsen and I'll have to do something about it. I'm confused tho if it's making me shake and twitch why the concern is my speech/writing center. That's my biggest question. After my original injury I wasn't able to write/speak for maybe about a month. When it started coming back I could only write/speak in 2-3 word sentences, my spelling was all wrong, I couldn't remember a lot of words at first and still have problems now remembering nouns, called dysnomia. Now, I can't condense my thoughts in writing or speaking but at least I can do both.

I have had changes to my medicine which has made it a little better. I know it is a band aid but it's a relief. I'm just going to trudge on test by test, grin and bear it. I don't know what else to do. Thankfully I'm very good at disassociating (smile).

Meggy

[redbaron]

Hi Meggy

how much medicine have they tried you on? My g/f suffers from pretty bad epilipsy and used to fit regularly and violently until 9 months ago when they found a combination that seems to have worked, she hasn't fitted since. i know it may not be applicable in your situation but if they are going to use a band aid even for a while might as well try to get one that fits (excuse the pun)

“There is a certain sort of man who ignores his own good qualities but is tormented by his bad ones, this is the man who writes about himself.”
-W. Somerset Maugham

[Meggy]

Thanks Redbaron for the suggestion. I've been through 15 anti epileptic drugs and I don't know how many combinations of drugs. My problem is the side effects. I get absolutely creamed by them and can never get to a therapeutic level. New ones come out, I submit to trying them, go thru the awful side effects hell again, and again and hear - no more. And then a new one comes out. I've even been hospitalized several times the side effects on the anti epileptic drugs hit me so hard. What I take now just slows me down, plus I get shots at home if I have a seizure that lastrs too long.

I'm so thrilled your g/f has gotten control tho [8D]. How wonderful for both of your lives! Liked your pun too!

Meggy

[Paddington]

glad to see you sharing on here Meggy,it is so good to know people care hun,i know you dont want to trouble your hubby but sharing cant hurt!He must know any way by the way your twitching has excelerated!Always here hun. Have e-mailed you by the way .God bless.Love as ever.mary rose.xxxxxxxxxxxxxxxxxxx

we are all in the same boat and can guide each other ashore

[Meg]

Meggy ,

You have a good vent . You certainly are ready for one. You are putting up with an awful lot and the prospects ahead may be scary but hopefully may really help you in the medium long term.

Keep asking your questions and getting explanations so you feel a part of your treatment.

Good luck and we'll be with you in spirit test by test..

Meg
www.anxietymanagementltd.com

proactiveness, positivity, persistence, perseverance and practice = progress