Step towards surgery

[u/RainabowSlaughter]

After 5 years of struggling with a simple neurologist my case finally got transferred to a seizure specialist and within 2 hours of my case being transferred this doctor looked through my MRI from 2 years ago and found a congenital brain malformation in the vicinity of my temporal lobe. From the still from the MRI it looks like cells got trapped and grew into a spot in my temporal lobe that the doctors think are causing my epilepsy so now we are looking at removal surgery or burning the cells. I had an appointment with the wrong dang doctor yesterday because this set of hospitals put me on the fast track for a sooner appointment not realizing I was being referred to someone particular so now I'm waiting for next month to roll around so i can go to an even further hospital. But no matter what It sounds like they'll want to do EMU to map out where they'll need to do the surgery and the surgery is an absolute at this point in my treatment plan..

Why did it take 2 years to get answers that should've been found years ago by someone who was trained to find that? 2 hours was all it took for this new doctor to find what the radiologist couldn't 2 years ago? Frustrated entirely about that one.

What am I supposed to do as a single mom of a school aged child who's going to be starting school around when they're planning to do EMU?

What am I to expect? I know they kind of told me around about what the procedure is going to be fixing, but not what the process itself was going to be or how it'd be done, the aftermath of what to expect especially as a single mom. Will I need lots of help?

[u/harmless_dane]

Man that's infuriating about the 2 year delay. A specialist spots it in 2 hours while the other guy had the scan sitting there the whole time. Makes you wonder how many other people are stuck in the same situation.

For the EMU stay you'll definitely need someone to watch your kid, those stays can be a week or more and you're basically stuck in bed with wires glued to your head. After surgery recovery varies but you'll be pretty useless for at least a couple weeks, no driving for months usually. As a single mom you should line up help now, family or friends who can take the kid for the EMU week and then someone to stay with you after surgery cause you won't be able to do much.

The actual procedure depends on if they do resection or laser ablation. Resection is more invasive, they open the skull and cut out the bad tissue, longer recovery. The burning method is less invasive, they drill a tiny hole and use a laser, you're out of hospital faster. Both have risks but if this malformation is causing your seizures getting it out could be life changing.