we met with the neurosurgeon this week, and we’ve made some big decisions that i’m still trying to wrap my head around. at this time, we have decided to move forward with the functional hemispherectomy. the neurosurgeon here in Charlotte has a lot of experience and feels confident that the surgery will have a good outcome. Mikisa’s file still has to be presented to a board of epilepsy specialists, and they may suggest further testing…but the surgeon is sure that this is the best course of action to treat Mikisa’s epilepsy. We have also consulted with two other neurologists (one is the head of pediatric neurology for CMC) who agree on the necessity of this surgery. right now, our hope is to have the surgery sometime in late november/early december.
discussing the risks was quite terrifying for us. it made me shudder to hear him say that it could take 6 months to a year before Mikisa gets back to her baseline in terms of her physical abilities, including walking. he said she may have more weakness in her left leg and may never be able to run, and that her left hand will be permanently paralyzed. she could struggle more with balance and have more spasticity in her gait. she will also lose significant peripheral vision (although she already has a field cut). it makes me sick to my stomach to think of her regressing with her walking, after all the work she has done to get this far. she has only been walking independently for 2 years! we have been in physical therapy (and OT and speech) once a week for 3 years. that’s a lot of therapy and a lot of time…and to think that we could go back to square one is a devastating thought. but Mikisa is a strong, determined and brave little fighter (much stronger than her mama!) and i hope and pray with all my heart that the surgery won’t take away her determination.
it’s so hard to think about them disconnecting an entire hemisphere of her brain and removing her temporal lobe…leaving her with only half of what most of us have in terms of brain capacity. how unfair is that? but, as the surgeon pointed out on her MRI, she has already lost most of that hemisphere, so hopefully she isn’t really using the right side of her brain at all. it is truly incredible how much she can do with half a brain!
the surgeon warned us that the first weeks and months would be very challenging. he said that she will be in the hospital for about a week and then possibly need inpatient rehab. he said that this is a drastic procedure and it will take months to recover fully (although she should be able to return to school within 4-6 weeks). she will probably not be able to talk for several days, she may have seizures directly following surgery from the trauma to the brain, and there are many other scary complications that can occur. one encouraging thing that the surgeon said was that if all hemispherectomies he did were on patients with MRIs like Mikisa’s, he would be really happy because his job would be much easier. because she has so much damage, there is less risk of bleeding/pressure/swelling. so that was reassuring.
it is still hard to think about such a drastic surgery when we see how happy Mikisa is right now, and how well she seems to be doing. we question the necessity of such an invasive procedure. but the fact is, her brain is not fine. she is basically having electrical storms all night long and frequent “zaps” during the day. her brain is very vulnerable to life-threatening seizures. that is no way to live! we do not want epilepsy to win. this surgery has the potential to totally change her life for the better. and we want to do whatever we can to ensure that she has the best quality of life possible. she deserves to have freedom from seizures!