Scarring on the Brain Causing a Seizure? Med Change?

[kayla4brains]

Hey Everyone, I posted this a little while back on the Neurology forum and it was suggested that I try here as well - thanks for reading!

Hi all - I'm new here but have been dealing with this particular issue for a long time now.  I was diagnosed with a macro-pituitary-adenoma when I was 8 and most of it was removed through surgery.  The rest of it was removed by gamma-knife radiation about 8 years after that.  I had no history of seizures until about 2 1/2 years ago (12 years after the surgery!!)  Out of the blue, I had a grand mal seizure.  I had an MRI, an EEG, and a 24 hour EEG done that showed nothing abnormal except for the scarring which I already knew about.  So, I went through a few different medications and am having difficulty tolerating them.  As far as the seizures go, I have not had one since, but I was put on Keppra for a short time and was not functioning well at all, Depakote I was on for about 6 months and the side-effects were too severe for me.  I thought I had found a match with Topamax, but I just found out that my recent hospitilization for about a dozen kidney stones that were causing infections and my kidneys to not balance acid levels properly are most likely due to the Topamax.  I am wondering if anyone has had a similar experience with just an isolated seizure and what your thoughts are about being treated - meaning, do you think these medications are actually preventing seizures from occuring or do you think that incident was a one time fluke?  I know that no one can really make that call but I thought that if anyone had been through something similar...it might help to shed some light.  Thanks!

[rumpled]

Do you have a copy of the recent MRI reports as well as the copies of the reports of the MRI reports for all the interim MRIs? I ask as I want to know if the scarring has changed in any way - and has the radiologist noted that the scarring has stabilized, and do they look at the past MRIs at all?

Why did they wait 8 years after the surgery to do gamma knife? Was there no option to do more surgery due to the scarring?

I have tried all those meds too - for different reasons, and yes, they are awful - I remain on topamax. They may move you to neurontin as that seems to be the next step.

I know a lot of people with pit tumors, but I have to say, few if none with seizures.

[kayla4brains]

I do  not have a copy of the MRI reports myself, but my neurologist does.  However, I am currently switching neurologists.  I can't help but get the feeling the one I have now would rather be retired and playing golf than entertain my medical questions (hence the problems I'm having now...)  I know that shortly after the seizure they said the only medical reason they had was "scarring on the brain", they didn't seem to compare to past MRIs - although that is an interesting point.  I often wondered why it would happen now after all of this time.

As far as the gamma knife, I had been stable for all of that time after the surgery on meds ( I was first on Bromocriptine, then Dostinex) but then there was a regrowth and even on the maximum dose of dostinex, it wasn't being controlled.

Have you been on Neurontin? Do you know anything about it, side effects, etc...?

[rumpled]

Yes - personally, I was not liking it, but my mom and FIL have been on it for years and did ok on it. At least on that med, you can vary the doses greatly.

Get your own MRI and report from the place where you had it down - next one you get, get the cd before you walk out (just wait an extra 15 minutes, ask for it before you get it done) and call a few days after to get report mailed.

I get a lot of MRIs - head and otherwise. I am what is known as health-pathetic. :)