For a period of time in 2020, I couldn’t go a day without sitting down to write about ROC and his journey with Epilepsy. Once that time period ended, it was difficult for me to concentrate on keeping up with the blog posts. What changed? Unfortunately, not much…until now.
In March or April of 2020, ROC was supposed to have surgery to have an RNS (Responsive Neurostimulation) device implanted in hopes to stop his seizures. Then the pandemic started so the surgery was postponed. Then out of the blue, in June 2020, ROC got the call that they had an opening and he was next on the list. It was go time.
ROC spent three weeks in the hospital for a final, and more invasive, set of testing to make sure the surgeon knew exactly where the seizures started so that he knew where to place the device and the electrodes. At the end of those three weeks, ROC had the device in his skull and three electrodes inserted in or around the thalamus of ROC’s brain. Only two of the electrodes were actually connected. We hoped this would be the beginning of the end of the seizures.
However, as I said, not much changed after the surgery. The tonic clonic (formerly called grand mal) seizures stopped but the myoclonic jerks didn’t. During the past three years since the surgery, ROC’s doctors have made “adjustments” to the implant in effort to stop the myoclonic jerks too. However, the adjustments were limited because any changes in one of the two electrodes would cause ROC’s entire left side start tingling. It seems like every time there was an adjustment, ROC would go without the jerks anywhere from a week to a month but then they would start coming more and more frequently to the point I was giving him rescue medicine every two to three days.
During this time ROC would also change up his diet and workout routine. Last summer, ROC trained to walk 1000 miles for epilepsy awareness (he ended up walking across Florida in the month of October). Most recently ROC started on a medically supervised ketogenic diet. Again, all of these attempts to make his body and epilepsy better would allow him a couple weeks of reprieve from the myoclonic jerks but eventually, the jerks would become more and more frequent.
Frustrated and trying not to be defeated, ROC went to his follow up visit with the neurosurgeon. I don’t know about ROC but I was in shock when I heard the words from the surgeon’s lips… the surgeon can move the electrode that is causing the tingling and/or the surgeon can connect the electrode that is in there but not connected. WHAT?! I forgot all about the third electrode and it never occurred to me that they could move the problematic electrode. Wow!
Yes, this will mean another hospital stay. Yes, this will mean another surgery. No, it will not be as painful as last time. Correct, we are not out of options.
We got out of the appointment and ROC sent a message to his neurologist. The neurologist responded he will talk to the neurosurgeon. If all goes well in that conversation, ROC’s case will go to the neurology group case review/conference. So while we sit and wait (yet again) there is this little glimmer of hope that the end of these seizures is still possible.