So I went to the nuero surgeon yesterday...the one that orginally found my avm...He went over my MRI results with me, and very clearly explained, that some people have seizures due to epilepsy, and there is no lesion on the brain, I said, you mean idopathic epilepsy...he said exactly....He went on to tell me, that not only do I have one lesion on my brain but I have three lesions that are Known to cause epileptic seizures...

We went on to discuss alot of the details..but it comes down to this simply..im going to be on medications for the rest of my life...period, even if I have long periods of being seizure free, and that because of the avm resection, the meningioma and the MTS, I will be at risk for break through seizures at anytime...which translates to...probably being unable to drive ever again, memory problems that will just progressively get worse...etc.

He is going to get me in to see this nuero in a clinic, and I am going to start being treated by a team of doctors there...that is a major relief considering my insurance issue. He was good...great bedside manner and answered all my questions. Tremendous improvement from the surgeon that actually did the avm surgery...who forgot to tell me about the presence of the meningioma.

So things are looking up a little bit after seeing him yesterday. Although I have alot to face medically...I now have a doctor on my side who wants to help me get through all this as easily as I can.


Peace and love everyone!!

Amanda

I'm sorry about the meningioma but I glad you like your Dr & things are looking up.

Good Luck With Everything mamaof6

Amanda-

Glad to hear that everything went so well. It's always a relief to know that you have competent medical staff at your side that you're comfortable with.
Good luck in your journey!

I had an AVM removed so long ago that I can't do MRI's. I still have seizures. The first one is how they found the AVM. I had a cavernous angioma, venous angioma & telangiectasia mixed w/ it. An anni was in the area also. The hippocampus was removed also.
I went forever w/o driving because of the seizurs, but finally got on Keppra & the license was in my posession. Might not be for long, but almost 4 yrs cruising around as my hair whipped in the wind was never, ever expected.

My advice is to get copies of everything.

Good Luck!

Wow ....Now I dont feel so alone.. did they find all these things at once? or did they discover them seperately? it seems like in my case, they find one thing, and the next time I see the doctor there is another....very forboding at times.

Thanks for good wishes...same to you...

Amanda

The first neuro thought it was an AVM, or possibly an anni. Keep in mind that was in the very early 90's. The first surgery was done a couple years later after a bleed. This surgeon just went to fix the cavernous hemangioma. A year later the MRI showed that I really did have an AVM. The rest of the "group" in my skull were found during the final surgery to remove all of the AVM. I bet the surgeon said "oh crap". Screwed up all of his plans for the day.

Currently, my latest VEEG was worse than the ones before that surgery & in Sept. my seizure went status & pheno was the only drug to stop it. Of course that was the last drug they had left to try & they had me drugged up & "sleeping" for 4 days , so things might get intersting before long.

Just one thing after another huh?

It certainly seems that way. I dont think I have had a VEEG..but I have been in status twice...once when they originally discovered the avm..i didnt bleed...i had tonic clonic szs. and then in november...at least six maybe eight tc szs....that left me completely out of it and unable to move for about three days...

Keep in touch please!! let me know how things go for you.

Amanda

AVM removed 2004, why cant you have MRI's. I go once a year. Just curious