There is a misconception about people with epilepsy. That is that we are so desperate to have our seizures stopped, that we will do anything, take any chance, submit to any medical procedure that a neurologist tells us has a chance of working.
We’ll stop taking our meds and suffer through a week or more of long term monitoring, submit to brain surgery with a 75-80% success rate, or continue taking an AED that doesn’t control our seizures but packs extra pounds on us month after month. Vagil stimulators, special diets, and accusations of noncompliance every time our seizures get out of hand. This is just a short list of what we’re sometimes exposed to in the course of treatment.
It’s important for us to know about these treatment options before we agree to them. It’s better yet to know about them before the doctor suggests them so that we can let him know about our intentions on the spot. Even better that we suggest treatments and let the doctor tell us why they are or aren’t good ideas for us. We need to become our own advocates, the quality of our treatment will be improved when we do.
I have Temporal Lobe Epilepsy, my foci are in my r. temporal lobe, and every time I have to change neuro’s they offer brain surgery as the #1 option of treatment for me. I always ask the same questions and their answers are always similar. 80% success rate, continue taking AED’s after surgery, and yes the 20% does mean that I might come out of the surgery worse off than I was when I went into it.
If I were having Grand Mal’s regularly, or even serious Complex Partials every other day, it would be worth considering surgery as an option. As it is my meds have me down to a coulpe CP’s a week with more aura activity than I’ve ever tried to keep track of. But, if I were to change neuros tomorrow, I’d still be offered the opportunity to take part in an 80/20 brain surgery session.
If possible include someone else, preferably a family member, in your research and your trips to the doctor. Including the examination room. Search the internet, send for pamphlets and product information sheets, read the small print at the end of any sales pitches you receive, the dangerous stuff is hidden there. Above all, don’t believe everything you read. Dig a little deeper on the web to either back a claim up or disprove it.
It sounds like a lot of work, but it’s not nearly as much work as going through unnecessary treatment when better options are available.
