We've had so much going on that our lives have been is a spin for a while. I'm not sure things will slow down anytime soon, but the latest info is this...
We talked to the epilepsy team at UCLA over the phone and they presented Evan's case at their weekly meeting. They agreed that surgery is the next step and would be willing to see us and perform the surgery if we wanted to make the trek out there. Rob and I are not sure there is a real compelling reason to go to UCLA for this. We are at the point of comparing two groups of doctors at the top of their field, but with very different philosophies on surgery. Either UCLA or NYU would probably do an excellent job so that doesn't make the decision easier. We have decided to move forward with NYU after talking to a lot of doctors, hospitals and patients. Most families we've talked to have been really happy with NYU, but no hospital is perfect and we did find a couple patients who were not thrilled with the experience at NYU. I'm actually happy to know what issues other families have had so we can work hard to avoid repeating their experiences. We've been really happy with NYU so far and I guess when you get to this point you have to go with your gut.
We still haven't heard from the insurance company about covering the MEG scan and Evan had it on Monday, so I guess it doesn't matter if they pre-approve it or not. Hopefully we won't be stuck with a big bill, but we don't plan to give up easily so they may as well just approve it now. We should have results from the MEG in two weeks.
Dr. Weiner, the neurosurgeon, called me back and he was really great to talk to. He seemed really down-to-earth and set up a "tentative" date for surgery. It's on his schedule as tentative because he doesn't usually schedule surgeries before meeting with the patient. Minor technicalities! I should mention that Dr. Weiner is a pretty hot shot neurosurgeon and I have yet to hear anything but positive feedback on him. He is highly respected by his colleagues and adored by his patients, so I don't think we could ask for more than that. Here's what we have set up:
Oct. 22 - Intro meeting with Dr. Weiner & pre-surgical workup
Nov. 8 - Surgery - invasive monitoring / grids applied directly to brain
Nov. 15 - Surgery - remove tuber from brain
Nov. 21 - Surgery - remove more if necessary; doctor will decide on Nov. 15 if this surgery is needed
We contacted FACES, a non-profit that works directly with the Epilepsy Center at NYU Hospital and they have three apartments available for anyone staying at the hospital for over a week. The apartments get booked early because it's a free place to stay in Manhattan, just minutes from the hospital and we were lucky enough to get a reservation for the whole stay. We'll be in a studio apartment about three blocks from the hospital. We feel very fortunate to have found this resource! A studio apartment in NYC is most likely pretty small, but we won't be there much and Rob and I will be taking turns sleeping at the hospital with Evan.