Question about GBM
I posted a few days ago with a couple of you about my dad's diagnosis of glioblastoma multiforme. I know that more than a few people have had experience with this and so I need to ask a question regarding surgical resection.
My dad had the debulking surgery last Tuesday. It was a very long surgery and the tumor turned out to be very vascular (read=aggressive), even at 1.5 inches diameter. After 9 hours in surgery, they closed him up and took him to have a CT scan. They found there was bleeding from the tumor into the space they had just cleared. They couldn't leave it there because the pressure would build up too much and wouldn't give him a chance to recover well, so they went back in the same night for 6 more hours of surgery. He had one drain in the left ventricle at the end of all that.
Wednesday (of last week) when we saw him, he was actually fairly awake and responsive. Thursday my mom and I had a meeting with the radiation oncologist to talk about treatment for him and he told us that overnight my dad became unresponsive and they were just finishing up putting in a second drain into the right ventricle. The pressure from fluid in the ventricles had built up to the point where it was pressing on the midbrain and causing him to fall into a coma. After the drain was put in, he was *slightly* responsive, but only if you really pinched him hard (it's so sad when they do that, though I know they have to). Later on on that same Thursday, the surgeon put in a third drain in the temporal lobe because the section where he had the surgery (the thalamus) was swollen and cutting off circulation within the ventricle, so it had started to swell.
After thinking we'd only be at the hospital to talk to the radiation guy, we wound up there for 10 hours--part of the time thinking that we were going to have to make a life or death decision whether or not to allow them to do another surgery to reduce the swelling, if he became comatose again.
Luckily, we didn't have to make that decision. He did get somewhat better over the weekend. He is not talking or having facial expressions, but you could tell his personality was intact based on his funny hand gestures during conversations. (He really only moves his left side...right side is weak such that he had trouble moving it willingly)
They tried to start weaning him off one of the drains starting Monday. However, he became very lethargic and his responses were dulled. After another CT it showed swelling in the ventricle again, so the lowered the bag to increase the drainage. When we left him last night, he wasn't really awake too much. The doctor told my mom that even though he's been doing fine without the respirator (his O2 sats are good), they don't want him to have to work at breathing and so not to be surprised if they put him back on the ventilator. (I am displeased about that, because so far his lungs have stayed clear and I really think not being on the vent has a lot to do with that.) He is already on a lot of Decadron and mannitol to reduce swelling...they can't do anymore medically for it.
So, I would really like to hear from some of you out there on this. If you knew someone with GBM who had surgical resection, how did they react to it? Time frame? Symptoms? I mean, the doctor told us that this is NOt uncommon; but I can't help but feel that these are small setbacks and the longer he's in the woods, the harder it will be to recover.
Any ideas or thoughts would be great---I just need to talk with someone about this--