last week, we were in the hospital for 4.5 days of testing. Mikisa had an MRI, SSEP, and vEEG. it was emotionally and physically exhausting, but we left with a new understanding of what is going on in her brain, and new hope for a cure for her epilepsy.
her epileptologist believes that our only option to really help Mikisa would be to have a functional hemispherectomy. she said that everything else we try will be just another bandaid. she feels that Mikisa is “the perfect surgical candidate” and that this surgery could potentially be the cure we are looking for. while this news is actually what we had been hoping for, it still felt like a sucker punch to the gut. and now, the decision is ours as Mikisa’s parents…which feels extremely weighty. our epileptologist said that this surgery could drastically change Mikisa’s life, and that it would give her a chance to develop and learn. the goal of the surgery would be to stop Mikisa’s seizures from progressing and further damaging her good hemisphere.
here is a description of a functional hemispherectomy from Web MD: “A functional hemispherectomy is a procedure in which portions of one hemisphere — which are causing the seizures — are removed, and the corpus callosum, which connects the two sides of the brain, is cut. This disconnects communication between the two hemispheres, preventing the spread of electrical seizures from one side of the brain to the other. As a result, the person usually has a marked reduction in seizures.”
right now, Mikisa has a lot of subclinical seizure activity, every 3-5 seconds during the day, and for hours at a time in her sleep. after last week’s EEG, the neurologist said she is having frequent periods of continual “discharges” ranging from 30 minutes to 68 minutes. yikes!!! these seizures are causing Mikisa a lot of challenges in her cognitive development, her memory, her concentration span, her processing speed, her behaviors, and her ability to speak. the prognosis right now is that eventually these subclinical seizures will progress into many daily “clinical” seizures and cause Mikisa to regress in her functioning. the MRI showed that the left side of Mikisa’s brain looks healthy, and we want to do what we can to keep it that way, since the right side is essentially useless. Mikisa is on anti-epileptic drugs right now, but they are not effectively controlling her epilepsy, leaving her extremely vulnerable to life-threatening seizures. all of her seizures are originating in her affected hemisphere and then rapidly moving to her good side. she had two clinical seizures (complex partial) while we were there, each lasting 15 minutes.
when i asked about the risks of the surgery, the epileptologist said that the surgery would be a lot less risky than what is going on in Mikisa’s brain right now. that was heavy news to process. so we are researching this surgery and what the potential risks could be. our understanding of it is that she is currently only using the left side of her brain, so the surgery shouldn’t affect her ability to walk (although it would take away any chance she had at moving her left hand). it would also cause a field cut in her vision, but our opthamologist believes that she already has left-sided neglect, so she has learned to compensate. there are other risks of course, the most scary one to me being hydrocephalus…but we still need to talk to the neurosurgeon about the likelihood of these risks and the success rate of the surgery, etc. obviously we are taking our time with this decision, and will meet with the neurosurgeon in a few weeks to discuss our questions and concerns. we will also find out more about the possible complications of the surgery, and hopefully that meeting will give us more clarity on what is best for Mikisa. it is not an easy decision, and we are seeking other opinions from several neurologists who have been involved in Mikisa’s care in the past.
we are feeling a little overwhelmed by all of this and are so grateful for your thoughts and prayers as we continue to seek and find answers to help our little girl. as a side note: we have many friends and acquaintances who have suggested various alternative treatments for Mikisa. while we appreciate your concern, we are well aware of all the alternative treatment options and have thoroughly discussed them with most of our 8 neurologists. they are all bandaids and are ineffective because she has such a large area of damage. they might buy us some time, but the thing we have learned about this surgery is that the sooner it is done, the better the outcome. so please refrain from suggesting alternatives at this time.