Today will be Ryan’s third brain surgery in almost three weeks. The first two surgeries were part of Ryan’s Stereo EEG (probes inserted in his brain and attached to an EEG for monitoring). Today’s surgery is different than the other two. During this surgery, the probes come out and a NeuroPace implant is put into his brain.
The NeuroPace is a responsive neuro stimulator (RNS). What this means is that it learns Ryan’s brain activity and will respond to a starting seizure accordingly by stimulating the brain in contrast to stop the seizure. There are two probes inserted to Ryan’s thalamus and the battery/device is placed under his scalp flush with his skull.
An interesting tidbit (albeit possibly gross to some) the piece of skull that is cut out and replaced by the device, is frozen and kept up to a year. Should Ryan want or need the device removed within the year, they will use the piece of bone cut out today to fill in the hole.
Ryan and I met with NeuroPace representatives before the surgery today. They gave us a computer with a scanner type of device. Ryan will need to put the scanner device up to his head once a day to collect the data the RNS collected. Then once a week he downloads the data to the computer and sends the information to a NeuroPace cloud where The NeuroPace reps and Ryan’s doctors can access the information, determine whether any adjustments are needed, and determine when they turn on the stimulator part of the device. It is important to collect the data in the next few months so that a seizure pattern can be determined and used for stopping the seizures once the stimulator is activated.
They took Ryan into the operating room today around 12:30. They prepped him while he was under anesthesia and started removing the Stereo EEG probes around 1:30. Removing the old probes and implanting the RNS should take two to three hours.
While I wait, I fill my time eating lunch, taking a nap in the waiting area, talking on the phone, half watching HGTV, playing games on my phone, and whatever else I can do to distract my brain from worrying about Ryan being under anesthesia again for an extended period of time. Luckily I have the waiting room to myself.
At almost 4:30 I have nothing to report. It’s been about three hours since they started the surgery. We are now at the end range as to when Ryan should be done. I try not to panic but I know the longer one is under anesthesia the more risks there are. I also know that there are some risks to inserting the RNS probes into the thalamus. The risks are small but if they happen, they are critical. At one point I heard a code blue called over the hospital speakers but I was able to breathe a sigh of relief when I heard the code was on a different floor and unit. I breathed a bigger sigh when the code was cancelled immediately after it was announced. Now for some news on Ryan and I can really relax.
At 5:00 one of the reps walked out to leave. He couldn’t really tell me anything because that is up to the doctor he did however say that the device is working perfectly. Hopefully I can talk to the doctor soon to make sure Ryan is working perfectly as well.
Finally! Around 5:30 the surgeon came out to see me. They ended up putting in 3 electrodes. Two went into the thalamus and the third went into the left posterior cingulate. However the third is not connected to the device. They will first wait to see how the two in the thalamus do and if they need to adjust them they can do a quick procedure to change the connections around. This will save time so they do not have to place electrodes later.
Next steps? A question that is getting old but necessary. Plus these next steps are good steps. Ryan will recover the next day or two. He will have evaluations by speech, occupational, and physical therapies. They will start collecting data from the device and the two electrodes in the thalamus. With everything hopefully looking good, Ryan should be home on or before Monday.
It may have taken three surgeries but as they say…third time is a charm. Let’s hope so and hope that this does the trick to make Ryan’s epilepsy more manageable and treatable.
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