This is a happy story. I'm posting it, partly because when we embarked on this journey last year we found it very comforting to read about good outcomes. Since we've already started a couple of threads about the post-operative difficulties we had, I thought we shouldn't just "disappear" when things were going better.
It's been exactly a year since the night my 11-year-old son Ben told us he felt sick. It was a couple of hours past his usual bedtime, and he'd been playing video games with a friend. Suddenly, his head began to hurt and he complained of pain in his neck and arm. My wife (who is a family physician) was alarmed, and got him dressed for a trip to the emergency room. Then he threw up, violently, and felt better right away. He'd been susceptible to migraines, and all our kids have had occasional bouts of "wry neck," so we cancelled the ER visit and put him to bed. My wife was still uneasy, and got up to check on him during the night.
The next morning he still had nausea. We took him in to the local ER, and the doc on duty thought it might be an atypical meningitis. They decided to transfer him to the Children's Hospital in Ottawa, about forty five minutes away. We rode in the ambulance, with the sirens wailing. If you've ever been in the back of an ambulance, you know that you can't see ahead, or out the sides; the window faces backwards, and when you look out of it you see the place you started from receding in the distance.
At CHEO, the emergency room physician ordered a CT scan, which revealed that there had been a bleed into his ventricles. It would be a month and a half before we returned from the hospital. Within the first week, hydrocephalus set in and Ben was rushed to the operating room to have a ventricular drain installed. After that he had to keep his head down on the pillow to let the pink CS fluid drain into a bag. He had a series of scans, one of which confirmed that he had an AVM on the right side, in the occipital cortex.
He seemed to be getting better, though. The pink fluid gradually turned clear, and he felt better every day. Our spirits rose. Then one evening, as we were sitting around his bed, laughing and playing games, the fluid in his catheter turned bright red, and little red drops began dripping into the clear CSF in the bag beside his head. The crisis team was in the room before Ben even had symptoms. Then the pain and nausea hit, and he had another emergency surgery to replace his tube, which had become blocked. He was moved to intensive care.
The second bleed settled his course of treatment: he would need surgery to remove the AVM. It would have to be done with great delicacy, to preserve his vision; even so, he might emerge from the operation with major visual deficits, or even (as one of the doctors warned us) full blindness.
The AVM removal was done by craniotomy, at the Ottawa Civic Hospital. The nine-hour operation was performed by the brilliant and gifted Dr. Agbi, using very advanced computer-navigation techniques to minimize damage to the tissue around the AVM. The AVM was obliterated. Immediately after the operation, Ben did have major gaps in his visual field; but as the swelling went down, these gaps got smaller and smaller, until they became nearly unnoticeable. Within a couple of days, he was reading, typing emails, playing video games. In another 2 weeks, he was able to tolerate removal of his ventricular drain, and was spared the need for a permanent shunt. We went home, after almost a month and a half in hospital. Within a few weeks, he was singing onstage, as the villain in the musical Urinetown. He went back to school and finished the year at the top of his class.
In the months afterward, he had occasional bouts of nausea and headache. Every time it occurred, we would dash down to the CHEO emergency room, and he would be given an MRI. There were no new bleeds, but we never really learned what the cause of these events was. We started a thread on this forum, asking for advice. One day, a few months after the operation, Ben reported that he saw a flashing, purplish, circular "light" in the left side of his field of vision. The light faded away within a few minutes, but his visual field deficit seemed to have gotten slightly worse. We now think this was a small local seizure. A similar event occurred in September (some seven months after surgery). After more scans, and consultations with neurologists, the recurring headaches and those two small seizures were ascribed to "changes in the brain as it is healing." Scans of his brain showed an "empty spot" where the AVM had been. Presumably, the area around this spot was still "settling down" after the trauma of his operation.
Since September, he's had no symptoms at all, and does everything he ever did before. Life is quite normal, for all of us. We're still apprehensive, of course, and little things still jangle our nerves, but things have gone as well as we could have hoped. In the years to come, he'll need to be scanned periodically to make sure that the AVM does not recur. For now, all is very well!
Thanks so much to everyone at this site. Reading about your experiences has helped us a lot.