Rule #110: The sooner the better

I finally heard back from the neurosurgeon on Thursday. After much effort on my part. I still think Dr Kestle is a very nice man, but the office system is an absolute joke. I called so many times Wednesday and Thursday, just to get to talk to the Dr to see what was going to be done. It shouldn't be like that. And I'm not upset that Dr Kestle seemed to forget to call, he's a very busy man. And I'm positive if he had been given the message, he would have called right back. Sigh. I hate being an outpatient. If we have to be a patient at all, I'd rather just be inpatient.

That being said, I now know the plan for Graham. Dr Kestle consulted with his fellow neurosurgeons and decided that it's most likely that Graham had an arachnoid cyst that ruptured, and that's why there is fluid on both sides of the membrane.

The first priority is to remove the fluid in the subdural space, since it's supposed to be completely empty. This may or may not also drain the fluid in the arachnoid space. We might also discover that as the fluid on the outside of Graham's brain drains, he may start accumulating fluid on the inside. Which would mean moving the shunt from the subdural space to the ventricle. Dr Kestle couldn't tell me how likely this scenario was, just that it was a possibility. I appreciate being well informed. I would not do well being blindsided a few months from now.

The radiologist also believes that Graham's frontal lobe didn't form properly. It's too thick, and doesn't fold in the right ways. It could look like this from all the pressure/fluid on it, but the radiologist doesn't think so. He thinks it's cortical dysplasia, which is associated with seizures. (I know, just what I wanted to hear right?) He doesn't think the risk of seizures warrants putting Graham on anti-seizure medication right now. But if he does seize at some point in his life, it would be a likely cause.

As far as surgery plans go, they will place a subdural shunt that will travel behind his ear, down his side and end in his abdomen. The CSF that drains with then be absorbed in his abdomen. I was told that recovery time was one to two nights in the hospital. But I have a hard time believing that. Surgeons often underestimate how long recovery really takes. I'm hoping no longer than 4 days.

I'm still working on accepting a shunt, because I really didn't want one. But it is what's best for Graham. It's possible the shunt will come out after a few months, or he might need it for the rest of his life. There are still a lot of unknowns, but I am grateful that surgery is only three days away. It will be so nice to get this part behind us.