I go to my new Epileptologist tomorrow and I'm so nervous. After having more 'bad' doctors than good, I can't get my hopes up and in a way, I am prepared for a let down. I know that's such a bad way to look at things, too.

I think I am mostly nervous because I know she's my last hope. I keep getting moved around because no-one can 'fix' me or even control my seizures at all. I'd like to think they can offer something to repair or control everything in my temporal lobe, but I know that there isn't much hope for me regarding my parietal lobe - and that has really bummed me out.

I looked at the success rate for non-tumoral parietal lobe surgery and it's around 20%. That's not a very good number for me. Not considering the risks are much higher, I don't want to end up with a severe impairment and/or blind when I only have a 20% risk of not having these parietal lobe seizures. It's like having to accept I'm stuck with them, and that stinks!

I try to keep my hopes high about my RTL, but honestly, I can deal with those seizures. It's the ones that are hard to fix that I can't deal with because they hurt bad.

I have everything I want to say written down. I have a strategy this time.

I plan to ask her right away not to talk, ask her how much time I have (I've accepted I am a 10-20 minute time slot to all doctors). If I have 15 minutes, I should be ok. I can read everything I need to say in around 12 minutes which leaves me 3 minutes to ask her if she really has the time to treat me like a human and make a real true effort to help me.

From what I heard, she's the best Epileptologist in this area.

Wish me luck!

Best of luck to you and special hugs. It's so difficult to go to a new doctor. I had one tell me that he didn't want to see my notes...grrr. I hope that when we go to see Michael new Epi Doc that she is as good as I have heard.

A good doc will listen and not rush you. I wish you all the best I can!

Julie

Good luck Ellie-
I hate having to go over things multiple times - maybe I talk faster than they can write {no wonder their handwriting is so messy}

putting it all on the table and asking her about getting "good" help from her or not is a good way to go.

Ellie
I am soooo glad you have written it all down. I do so hope that this time you get a genuinely good doc who LISTENS and who returns calls and ranks your feedback high!

Ellie -- I'll be thinking about you tomorrow andwishing you the best.
I sure hope that this epi's first appointment with a patient is longer than that.

Ellie,

Hope everything goes well for you. I can remember going to my neurologist for the first time. In all the years I have had epilepsy the doctors I have been sent to have been a flop, not doing any thing for me. The one I go to know has cared for me greatly and I have reduced my spells. Just keep your chin up and go in with I positive mind.

You are in my prayers.

Darlene