Follow-up Appointment

We just got back from the follow-up appointment...roughly 10 hours of driving for around one hour of doctor time. Good thing we like our doctors! Nothing earth shattering in terms of news, but good report on how the scar looks and Adam's general recovery from the surgery. We met with Dr. Hernandez (the neurologist specializing in epilepsy), Dr. Donohue (the neurosurgeon who performed both surgeries in November), and as a bonus--we also saw Dr. Marks (the neurologist specializing in movement disorders). The last one was a last minute surprise, as he was available to visit with us for a few minutes as we had questions about the next phase in Adam's treatment.

So...here is what we learned today from our various doctors:

1. Adam won't be changing medications right away...we had mistakenly thought that he might be able to cut back on some medications after the surgery, but when asked that question today, were told that Adam would have to be seizure free for two years before they would consider that. Oh. Well. That was not what we were hoping to hear...especially since the longest he has ever gone without seizures was three months, and that was several years ago. We are now at around five weeks without a seizure since the surgery, so that is something!

2. Adam will continue to see Dr. Hernandez for epilepsy treatment, but he will now be moving towards treatment for the dystonia with Dr. Marks. If you have been following our saga for a while, you may recall that we were originally referred to Dr. Marks months ago (first visit was in March) to see if Adam would be a candidate for Deep Brain Stimulation (DBS) surgery. Dr. Marks wanted us to work through any possible options for epilepsy surgery first, as that can't be done after the DBS. So, now that we've worked through that process, we are back to dealing with the movement issues.

3. Adam will likely be going in for DBS surgery in either late spring or early summer. It will be a shorter time commitment than our last hospital stay...apparently they generally do the surgery on Wednesday and then send you home on Friday. Part of the scheduling will depend on the healing needed from the first surgery prior to the next surgery. We will keep you posted as we move further on those plans.

So, that catches you up to where we are now!

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