My pediatrician Shannon Hayes attended along with the team of neurologists, the neuro psychologist, epileptologists, neuro surgons, other doctors and specialists. So a very seasoned room of people I would imagine! Our epileptologist presented Lillian's facts, video footage of her EEG's, seizures, MRI's, and other pertinent medical history and information. Then the room discussed next steps, such as new meds, keto diet, vegus nerve stimulator, and surgery as options.
According to the message relayed back to me, the entire room was in almost instant agreement that the only solution for Lillian will be a functional hemispherectomy. She is still having about 180 seizures daily (according to her last in patient EEG) and despite maxing out on various meds the seizures continue to get worse and worse.
While researching this I found that probably about 100 hemispherectomies are performed in the US each year and about 20 or so of those are done at TCH* (*note this is just a quick estimate relayed to me not official statistic). I can barely handle typing this but a hemispherectomy is the removal/disconnection of an entire hemisphere of the brain (Left or Right), leaving the patient with half of a brain effectively.
Dr. Quach told me that Lillian will need a RIGHT SIDE FUNCTIONAL HEMISPHERECTOMY. I need to ask TONS more questions but online it says during this procedure the temporal lobe is removed, a corpus callosotomy is performed and the frontal and occipital lobes are disconnected from the rest of the brain. So the parts that are not removed are disconnected and basically floating around so that the fluid does not overtake the brain. The hope is that Lillian could be 100% seizure free after the surgery.
Obviously its a very risky surgery and we can't go back and undo anything if it should happen to go wrong! But the risks of NOT doing the surgery are also great. 1. Lillian has many risk factors for SUDEP based on her frequency and timing of seizures (most of them happen while she sleeps) 2. The doctor thinks the seizures will continue to get worse and worse and could eventually start attacking the good side of her brain.
So we have weeks and months but not years to make this decision for Lillian. It is very scary and we are praying and doing research to do the right thing.
Some websites about hemispherectomies:
Lillian's MRI....I can't sleep so of course I am looking at all these pics over and over. I have had the disk since August but try not to get them out. I'm not a medical professional but some obvious issues here. NOTE: MRI images are flipped so you see the right on the left and left on the right side.
Lillian's MRI August 2012
Please keep praying and/or thinking kind thoughts for my daughter!! Thank you :)