Hi Stefie,
I don't know if you remember me, but I had a tumor(colloid cyst) removed Nov 2000. I was on seizure meds for a year post op and was allowed to wean off the med. I went about 2 years without problems, then the dizziness, visual disturbances in left eye started. I went back to my neuro, and she had me take another eeg just to see what was going on. It was abnormal, and she started me on seizure med again. I continued this for about 2 years, and saw her again last month after having another sleep deprived eeg. She says normal, and to start weaning again. Honestly, I am scared the same thing will happen. Things will go fine for awhile, then I wind up having to go back on the med.

Somewhat reluctantly, I have begun weaning from the Trileptal. We will see what happens.

One thing about the topamax, it will help with the headaches as well as seizure control.

Hang in there. You have gone through a very serious surgery, and recovery.
I can totally relate to your feelings of frustration right now.

Wishing you the best, Dodi

I've been seizure free since tumor was removed 7 months ago but I have to go back to hospital every 3 months for "check-up" MRIs. That will last for 1 year then the check-ups will drop to once every 6 months. Then it will be MRIs once a year for the rest of my life.
I'm currently on Trileptal and Topamax and the neuro said that in Oct. I'll start dropping some of the meds but I will be on AEDs for the rest of my life.

I had an Astrocytoma removed 27 yrs ago. Didn't need AED's for the longest time. I was on Depakote for a couple of years but I have achieved better control with Keppra and have been sz free for over 2 years now. Wish you the best of luck gaining more control.

Hi Stefie,
It's good to see you back! I know that when my Dr. put me on Topamax it increased my sz. making me have 23 sz. in 1 month the AED just made things worse for me and just like you I got headaches also. I hope things get better for you and the sz. stop. Here's wishing you well and May God Bless You!

Sue

Hello again..
Thanks for the response everyone. I really have missed this site. I imagine everyone has.
Originally I was told I would have to do MRI's every year for the rest of my life but after a couple of them came back clean I would only have to do them if I had problems or symptoms (which for me seems to be whenever I have headaches,which is frequently).
I stopped taking AED's 9 months post op (I think anyways) and did fine (except for the headaches) until the vision thing started in. What was your vision distubance like? How did it progress? I'm a bit wierded out about the possibility of these small seizures "growing" into larger ones (exactly what happened last time over the course of several years).

I'm going to schedule another MRI soon. Just waiting for the hospital to call.

Jingle- You had a DNET removed didn't you? That's what mine was. I seem to recall talking with you about that before. I'm glad to hear you're doing well.

Stefie, I hope everything turns out great for you! Be safe for now, and keep following up until you have all the answers you were looking for.

Ah, Stefie..... I'm so very glad to hear you're having another MRI soon. ( I hate having those miserable things done - noise terrifies me - and I have to make a 1 1/2 - 2 hour drive to have mine but I wouldn't miss one for anything ) I think those check-up MRIs are SO important.

My tumor was a grade 2 oligodendroglioma and it's rare but not impossible for those things to return.

Like I said - seizures haven't returned but some headaches have. Certainly not like they used to be but.........