We traveled to Duke Hospital in Durham yesterday to meet with Dr. Grant and Dr. Mikati.
We met with Dr. Grant first. He is the neurosurgeon and we REALLY liked him. We did discuss the hemispherectomy but he wants to make absolutely sure that those seizures are all coming from the left side.
The actual procedure involves removing some parts and cutting some others, not removing the whole side as might have been suggested before.
We talked about the test to put the left side asleep and he was definitely hesitant to do that. It has a risk of stroke and would be very traumatic for a 6-year old as he would have to be awake and lie very still. They can get the same info from an MRI.
We discussed the VNS and ketogenic diet again but he felt, although relatively risk free, the chance of reducing or eliminating his seizures would be pretty low. He was personable, interacted with Jack and genuinely listened to our concerns. He and Dr. Mikati are actually in the same office together and work as a team, so they will review Jack's case together as we go forward.
We next saw Dr. Mikati. He is the Director of Pediatric Neurology at Duke. An interesting little man, but obviously very smart. He asked very detailed questions about all the different types of seizures he has, what medicines he has tried, etc. He said we'd start with a 3-7 day EEG monitoring and maybe an MRI later.
We thought it was all going well until Dr. Mikati said... "ok, we'll set a follow-up for April". We said "what?". He said there's a long waiting list for the EEG monitoring. We said we'd really like to push it up if possible so he left the room and came back and few minutes later. Magically, there'd been a cancellation on 01/21.What we think really happened was that he talked to Dr. Grant and decided it was best to move forward more quickly.
So, the plan is to go into Duke on 01/21 for 3-7 days of EEG monitoring. This is where they hook the electrodes up to his head and he has to stay in bed the whole time. It's unpleasant but not uncomfortable. The Child Life people hopefully will keep him entertained and we hope to have CAYLIE in the room with him. The length of time depends on how many and what type of seizures they can collect data on.
According to Dr. Mikati, once they review the EEG, they can reasonably predict a % success rate with the surgery. For example, 70% chance of being seizure free etc. Anything less than 50%, they won't recommend the surgery. It could be anywhere from 50% to 80% depending on the results of the EEG. It is possible that he would not have to take medicine any more. It is also possible that he would still have to take some. It is also possible that the surgery wouldn't work or that seizures could develop on the other side later. We will get more info on the risks if/when it becomes a reality.
Lisa and I feel better about things and are hopeful now that we have a plan. Thanks to all for your thoughts, prayers and concerns.
Life with 4 Girls
1 year ago