Tuesday, March 20, 2012
Jim spent literally hours at the eye doctors on Friday, we got there at 9:30 and didn't leave until around 2:00, but it was all good. All the eye tests, even the visual field tests showed no change in Jim's vision, he is still mostly blind. I was so worried, he really can't afford to lose any more of his eyesight. WE went to his Neurosurgeon yesterday and I was told all was well with his extreme swelling of his head, it could take months to repair itself and re-absorb the CSF fluid but, unless it is leaking to the outside world, don't worry. The best part, still no seizures! so Mom is happy now!!
at 11:02 AM
Wednesday, March 14, 2012
Jim had his first seizure surgery Tuesday to place the grids, the surgery lasted 6.5 hours. It went well his grids were in place he spent a day in ICU and then stayed in the hospital for a week being monitored. Apparently his brain did not like the grids being added he was having horrible headaches and bouts of violent vomiting. He had several wires coming out of his head attached to monitors so he was limited in how far he could move, it took two of us carrying wires and equipment and wires just to go to the bathroom and leaving the room was completely out of the question. Jim had lots of seizures up to 10 a day. That is good they wanted him to have seizures so they could see where they were coming from in his brain. They kept saying that they weren't getting the kind of information that wanted from his seizures. Sunday night they started testing his brain to see what functions were in what places on his brain, they had him talk, count and repeat words while they put small electric charges through different areas of the grid. They did these tests for hours, all Sunday evening, and most of the day Monday. Monday evening Jim's Neurologist, Neurosurgeon and Neuropsychologist came in and gave us the results: they couldn't find a focal point for the seizures, the seizures seemed to be coming from all over his brain, not just one place, that is bad because they couldn't remove the "Spot" or "Spots" where the seizures are coming from. However there was a large area of brain tissue that was damaged from previous brain surgeries and radiation. Jim's Neurosurgeon said logically the area of damaged tissue should be where the seizures are coming from but, the tests don't show that. They have tested the area of damaged tissue and all the brain functions that are normally in that spot have moved to other parts of the brain. However they can't test for everything and they are think his vision might still be there along with other things that they may not have tested for. They said that we have two choices for the next mornings surgery: we could go in remove the grids, do nothing else, and leave him with seizures, or we could remove the damaged tissue, hope the damaged tissue is causing the seizures and hope that removing it causes no problems. The doctors could give us no recommendation one way or another. It was totally up to us and we had to decide before his surgery scheduled at 7:00 the next morning. Not an easy choice but, my husband, Jim and I all separately came to the same conclusion: to go ahead and remove the damaged tissue and hope it helped somewhat with the seizures without causing damage, or in Jim's words "well we've come this far, we might as well go for it". It was a tough choice. His second surgery was much quicker about 4.5 hours. The morning after the second surgery I went to the ICU to see him and to my surprise there was Jim sitting in a chair! eating solid food! he was already off oxygen, off oxygen no catheter, no brain-drain and ready to go to a regular hospital bed! He looked so good.
The results so far:
The good: has not had a seizure since a few hours before his second surgery! He does not have any noticeable deficits from the surgery. He seems much more "with us" mentally and has not had any episodes of his "eyes going weird"
The not-so-good: We think he may have lost some more of his vision, he said that there is no change but he seems to be having a more difficult time seeing things. It is hard to tell because he has such bad vision before. He is leaking CSF (Cerebrospinal fluid) into the the side of his head where they did the surgery. The side of his head resembles a large water-balloon. He won't or can't move his head and keeps it tilted to the side. I assume this is because of the CSF leak. We have Dr appointments tomorrow to hopefully find out more.
at 11:37 AM