Our appointment was at 10 this morning with Dr. Jeffery Wisoff at NYU. We were EARLY!!!! I am never early, so that was pretty cool. We met with Dr. Wisoff while Jack napped the entire time on Terry's lap. We really liked him. He was very nice and informative. In his office he has a computer that faces you as you talk to him. Whatever he is looking at on his computer, you are seeing on yours, very neat. We got a somewhat similar opinion as Dr. Souweidane, but also somewhat different. Now even I'm confused!!
He wants to operate on the cyst by performing a microscopic fenestration, instead of a endoscopic fenestration. Basically, this surgery would be a little more invasive but he feels that he prefers the outcome better and has more control while doing the surgery. He also said that they are unsure of what the long term prognosis is if it is done endoscopically. So instead of just going in and putting holes in the cyst, he will go in the same place, right up by Jack's ear, and remove a piece of Jack's skull the size of a silver dollar. Then he removes the whole front of the cyst and pokes holes in the back of it. After that he also goes down through the middle of the brain to where the fluid flows, or is supposed to flow naturally, and makes sure that it is all working properly. He will replace the piece of skull that was removed and secure it with some plates that his body will naturally absorb within a year. Jack will have to spend 2-3 days at the hospital and we can stay with him the whole time. He will need subsequent MRI's at around 6-8 weeks post-op, at 6 months, 1 year and 18 months, and if all is good then that will be it!!!!
Dr. Wisoff was also a bit more honest about the PDD diagnosis. While he will not guarantee it will improve, he says that when something that big is pushing on your brain, that wasn't always so big and you reduce the pressure, then it should make a positive impact! That was the best news of the whole day!! Oh, and his brain should expand back into the empty space that will be left after the fenestration. He showed us films of other cysts, before and after, it was all VERY promising!! There is a 10% risk that he can develop fluid on his brain that doesn't drain, like it has no where to go and if that happens then he has another 10% chance that he will need that drained as well. Other then that there is about a 1% chance that anything really bad would happen, which we know isn't an option.
We decided to go ahead and schedule the surgery while we were there today. He can take us this Tuesday (after moving one surgery later). Now we just have to hope that Jack's runny nose doesn't go into anything else or we will have to postpone it. It appears that Caitlin has a little something and Liam has a cold as well. Hard to imagine that it is going to happen so fast. We have mixed emotions, but we know that it is all for the best. We need to give Jack the best possible chance at having a normal childhood and living the rest of his life with this arachnoid cyst nothing but a thing of the past.
Once we scheduled the surgery they sent us over to the hospital to have Jack's blood work done. 5 vials of blood, but he was a trooper! We had to send Aunt Ing to the museum without us because it took 2 hours for the pre-op work.
At the end of it all we got to meet Ingrid and the kids at the museum, saw the dinosaurs, the big whale and the butterfly exhibit ( with a few stops in between of course).
All 3 kids had butterfly's land on them which is a sign of good luck. We'll take it!
Thank you to everyone for all your thoughts, prayers and kind words. It is very much appreciated!