I used to blog about my epilepsy about five years ago, not long after I was diagnosed, but despite them being warmly received, I stopped. I didn’t feel like I had anything new or important to say. My treatment hadn’t changed, I was still having seizures, I was just plodding along accepting that this was how my life was going to be. However, after my last appointment with my consultant, this all looks set to change in 2017.
I had always assumed that my epilepsy wasn’t severe enough to warrant surgery – I don’t fall down and hit my head on a daily basis. I have temporal lobe epilepsy and have on average 3-4 simple focal seizures a day – this involves a funny rising feeling or maybe a smell of burning – nobody but me knows it’s happening. About every 4-6 weeks I have a complex focal seizure, where I will lose consciousness and repeat the same word or phrase over and over, my word of choice is currently underneath, underneath, underneath. It’s not life threatening, just a tad embarrassing, imagine the looks you get on the train or in the supermarket!
Surprisingly, when I saw my consultant two weeks ago, she said that she would like to put me forward for surgery. If I understand what she said, there is a danger with temporal lobe epilepsy for networks to be permanently formed in the brain, making it harder to stop or treat seizures. However, this does not mean surgery will definitely take place. I now have to undergo a series of tests – an MRI, video EEG and psychological tests – to see if I am suitable. They need to be able to identify the right area of brain to remove, which won’t impact on my life too much. It’s scary, but exciting, it would be amazing to be potentially free from seizures and free from the hassle of drug taking, the side effects, and the stroppy doctors receptionists and pharmacists.
My consultant has also arranged for me to see an epilepsy nurse – I knew such things existed, but I thought they weren’t in my region. She has also arranged for me to have a bone density scan – to ensure my anti-epileptic drugs aren’t knackering my bones.
All of these things mean I will have plenty to blog about in the coming year … I just hope my ramblings will be of some use to you.