Tuesday, November 09, 2010
by Mark Beckwith
The trip to the surgeon's office for pre-surgery consultation was a long one. He finally saw us fully two hours after our appointed time. I'm sure national healthcare will fix this.
(That's an attempt at light humor, FYI.)
Neurologist will wire her up with electrodes to monitor the seizure activity while they poke around in there. He will test her before and after to confirm a reduction in seizure activity post-excision compared to pre-excision.
Surgeon will take photos for us (we wish to compare the melanotic deposits visually to the MRI scans and get a feel for how much the MRI does or does not catch).
Hard to believe - gulp - surgeon plans to excise a part of her brain the size of a lemon. The void eventually is filled in naturally with CSF.
There is about 1% chance (risk) of accidental (permanent) paralysis on the opposite side of her body.
If all goes right, her tissue will be a very rare contribution to science - we know of only one other bit of brain tissue from a patient with neurocutaneous melanocytosis (NCM). There are probably a small number of others tucked away here and there, but this one eventually makes its way, preserved alive, to the new Nevus Outreach Tissue Repository. This is a big deal for us.
Surgeon says the success rate of this procedure - i.e. removing the temporal lobe to end epileptic activity - is 75% overall (meaning 3 out of 4 patients' seizures are cured). I think that's for all cases. Of the 12 cases (over 30 years) we've been able to put our finger on where an NCM lesion like Megan's has been removed from the temporal lobe, all cases reported an end to the seizures. Certainly all the doctors we have been talking to are quite optimistic.
We feel pretty good about this. It's going to be a rough night, nevertheless.
Megan spends the night after surgery in ICU, parent sleep-over not allowed, then, when they think she's ready to move out, they do another MRI (probably Thursday) to make sure everything looks good inside there. If the MRI checks out, they let her move onto the regular floor.
Apparently these patients are up and walking the next day. Wow. Doctor said they are usually released within 5-7 days, so everyone I told "4 days" to should take note that I stand corrected. Think "choir practice on Wednesday November 17" and let that rattle around in your head for a bit. Not sure we'll be back in time.
Thanks to everyone for your thoughts, prayers and support.