It has been about four weeks since Ryan’s NeuroPace implant surgery. I’ve been uninspired to write or update during this time. Ryan has been bored, depressed (although he won’t admit that) and still having myoclonic jerks and tonic clinic seizures. These aren’t the things I was hoping to report.
However there is still hope. at this point the device is learning his brain activity. We try to look at it as if the jerks and seizures are just helping the device know when to stop this abnormal brain activity before it starts. We just have to look forward to the device being fully activated at this point.
Mid-August is the time. Ryan has an appointment with the neurosurgeon and the neurologist. They will get their updates on occurrences since the surgery and then activate the device. In the meantime, medications will continue to be adjusted, personal plans will be changed, and the seizures will be continued.
We can’t quit, we won’t quit, we never quit. We have come too far for this implant not work. I am inspired to have the next post be better news.
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.
I’ve lost count of where we are in this process. I know Ryan had his first surgery on June 15th. I remember Ryan had his seizure exactly one week after he had the 13 probes inserted. I am fairly sure he had two more probes inserted three days after the seizure. It is from there where the timing of things really gets fuzzy.
I’ve been calling this period “Limbo Take Two” but this time instead of waiting for a seizure we waited for answers. Ryan’s doctors determined that his epilepsy is extremely complex. While it is generalized epilepsy, it has traits of focal epilepsy. Ok, there is one answer but it’s not the answer we really need to hear.
The answer we are waiting for is how the doctors want to treat this complex epilepsy. Usually, medication is the only treatment for generalized epilepsy but the doctors keep bringing up a NeuroPace (responsive neuro stimulator “RNS” – responds by stimulating brain to stop seizure when it is starting) and they bring up a deep brain stimulator (“DBS” – constant stimulation of brain to stop seizures). So, which is it?
After multiple conferences amongst Ryan’s whole neuro team and after the neurosurgeon consulted with colleagues around the US, finally a decision was made and an answer provided. Other level four neuroscience centers around the country have been implanting an RNS device, or even two devices, in a very small and select population of generalized epilepsy patients, like Ryan.
Ryan’s surgeon and team took this information, conferenced again, and decided that it would be better for Ryan to try the implant despite his complexity then to send him home with an epilepsy that is clearly worsening.
So here we go again…surgery number three. Ryan and I have been researching this from our end as well. Asking questions to the doctors, reading the little research materials out there, and talking to others with an RNS.
More answers: This surgery will be about 4 to 5 hours long. They will start prep around 11 am tomorrow. He will have the probes that have been in the past two weeks taken out and two probes put in that will be attached to the battery which sits under the scalp and flush with the skull.
The next biggest answer we received? Ryan should be discharged Monday. Monday! I may have lost count of where we are with things but I do know that Monday will be exactly three weeks from the date of Ryan’s admission. He is ready, and we are all ready, for him to be home.
We are four days out from the second surgery to put additional probes in Ryan’s brain. Ryan has been in the hospital a total of two full weeks today. There still hasn’t been a second seizure but there have been some myoclonic jerks and a possible panic attack.
Despite not having a second seizure, the doctors may have collected enough information to make a treatment recommendation. They explained to us that Ryan’s epilepsy is complex in that there are different areas of his brain where they consistently see spikes are working as a network. They believe the source of the network is in the left posterior (rear) cingulate.
The doctors are conferencing again tomorrow to discuss Ryan’s case but it sounds more than likely they will be recommending a NeuroPace implant.
The NeuroPace will learn Ryan’s seizure activity so that it can sense when a seizure is starting and distract the brain to stop the seizure. From our research it seems as though Ryan would leave the hospital with medications as well as the implant but he should be able to wean off of the medication as the device fends off more and more seizures. It is battery operated, like a pacemaker, but the battery should last about 8 years or so. Ryan would need to have surgery again to have the battery replaced.
Another seizure at this point will help the doctors to confirm that the seizures are in fact stemming from the left rear cingulate and that the NeuroPace is the best option of treatment. However, the doctors will make their recommendation with or without another seizure. Ryan’s third and final surgery for this hospital stay will be sometime at the end of this week.
Of course what type of surgery they do will depend on the recommendation and Ryan’s decision. Ryan is leery of brain implants so I am helping him to research the NeuroPace, talk to others who have it, and weigh the pros and cons of having an implant vs medications only treatment.
So it is at least another week here in the hospital. At least we have some answers and on the path to recommendations and possible solutions.
I haven’t posted in the past few days. Mainly because there has been nothing to report. We have still been in waiting mode for Ryan to have another seizure to give the doctors the information they need to determine what will be done in the third surgery.
As a bit of recap, last Thursday was the second surgery from which Ryan recovered much quicker because only two additional probes were placed and they were prepared for the nausea before the surgery.
Friday was still a recovery day but more so a waiting day. In order to try to expedite things, I brought Ryan hot dogs to eat. I’m sorry to all of Ryan’s coaches, trainers, nutritional support, etc but these hot dogs were the highest in nitrates we could think of and no where as clean as Ryan would otherwise eat nevertheless, since nitrates can trigger a seizure, Ryan ate three 7-11 hot dogs. It wasn’t worth it. Nothing happened.
So Ryan sleep deprived himself that night which brings us to Saturday. I had to work so Ryan’s dad visited him for the day. As an extra bonus for me Ryan’s mom took our son to her house for the night. I had the house to myself and still no seizure on Ryan’s end.
I tried to distract myself by having a friend over for dinner. I of course kept in contact with Ryan. I couldn’t give myself a complete break when Ryan is in the hospital with no foreseeable distractions or breaks until this is done.
After a bad night’s sleep for me and a vomiting dog to tend to, I get a text from Ryan. He had an “anxiety” attack at 2 am. The way he describes it however sounds like the time when we were first working from home together and Ryan said something weird was happening and ran around the house frantic not knowing what to do. I had to finally snap him out of it and get him to lay down. We could only assume at the time that he had a seizure. (See post Working Remotely from Home at https://rocstopseizures.com/2020/03/24/working-remotely-with-epilepsy/)
So now we wait until the doctor can look at the EEG and video to let us know whether or not Ryan had a seizure last night. The answer to this question may give us an answer as to whether Ryan’s frantic attack in late March was an actual seizure.
I feel weird saying this but I really hope what happened last night was a seizure and if it was it gave the doctors the information they need to make some decisions. I know Ryan is bored and tired of being in the hospital. I can’t help him because his concentration is so poor after 23 days in the hospital, two surgeries, and possibly two seizures I am just as ready for him to be home as well. Our son is 5 years old and understands daddy is in the hospital to help figure out what’s going on in his brain. However our son does not understand why it’s taking so long. We are all so tired and ready for things to go back to normal absent Ryan’s seizures.
I’m trying not to get so tired so that I stop posting. I am just tired of posting that we have no information. Thank you to those who have been following, whether it be daily or occasionally. I hope for more regular posts with news and advancements going forward from here.
Here we go again. It’s surgery day. We just did this a week and a half ago but yet it all feels different this time.
After having the probes put in his brain over a week ago and getting readings from Ryan’s seizure last Monday night, the doctors decided they needed to see more. Instead of waiting for more seizures, however, the doctors want to put two more probes in and wait for another seizure.
As with the first surgery, it seems appropriate to provide a time accounting of the day. This is it:
2:00 am. – I wake up. I can’t sleep. I have everything ready to go. This is all so familiar but Ryan is already at the hospital. Visiting hours are generally between 9 am and 8 pm but Ryan told me they are making it so I can go to Ryan’s room between 6 and 6:30 before they take him down to surgery. If for some reason I miss him his night nurse will make sure I get to him.
4:00 – I have been in and out of sleep for the past half an hour. I don’t know why I’m so nervous. The surgery is shorter since we know they are only putting in two probes. We have been through this once so this second time should be a breeze.
4:30 – after they took Ryan into surgery the first time I went to the cafeteria for breakfast. The cashier noticed my ROC Stop Seizures #neverquit top. She reminded me of the old saying, “winners never quit and quitters never win.” As this saying pops into my head again this morning it inspires me. It’s go time. Let’s do this!
6:15 – I made it to Ryan’s room just in time. While I was riding up the elevator they came to get Ryan to take him down to surgery. Luckily it took some time for them to disconnect all of his wires and get him ready for the bed transfer. He looked good. The nurse said he’s been pretty laid back about this. I noted that it’s easier to be that way this time because we know the drill. (No pun intended given they are about to drill into his skull!)
8:15 – and away he goes. The start of anesthesia in his system and they roll him to the OR. It will take them about another hour to get him fully ready so they can begin. I anticipate about a four hour wait until they tell me he’s done and I talk to the doctor. Last time I went running to the cafeteria for food and coffee because I didn’t feel right having it in front of Ryan while he was fasting. Since he was already at the hospital this time, I drove through Starbucks for coffee and some egg bites. In other words, I have no need to run to the cafeteria now but hmmm, what else am I going to do for four hours?
11:30 – the nurse from the surgical services called me. Apparently the doctor tried to call me awhile ago (the nurse’s call is the first time my phone rang) but couldn’t get me. Ryan is out of surgery and everything went well. Ryan has been in the recovery area for about an hour. They are now making the arrangements to move him back to his room where he has been since after the first surgery. They gave him extra nausea medications before the surgery and now I’m helping him to eat ice chips. Hopefully he won’t have nausea this time around.
4:00 pm – it’s been a pretty uneventful afternoon. Ryan got the wires hooked up to the monitors. The nurse has been making sure his pain is under control. There hasn’t been any signs of nausea this time. Both of us have been sleeping. Ryan is reading me memes and posts from Social media. Hopefully I don’t jinx this but I don’t expect any seizures to come before the end of the day. I think it’s safe to wrap this entry up and start tomorrow in Limbo yet again.
Thank you to all who prayed and wished for Ryan to have a seizure. Admittedly a weird thing to thank for but the prayers and wishes worked so a thank you is well deserved.
Last night, after visiting hours, and after reposting Ryan’s live video as a blog entry, it happened…Ryan had a major tonic clinic seizure.
It is difficult to say what triggered it. Ryan ate nitrates in the late morning. The doctors removed his gluten allergy so he could try eating gluten for a possible trigger. There were also some pretty good thunderstorms going on in the area. Or maybe, just maybe, Ryan had the seizure because it was time and not because it was triggered by anything he did.
We will probably never know. I’m not even sure that we care. Now we want to know the next steps. We want to know if the one seizure was enough. We want to know what the data says.
The surgeon came by this morning and said that the team is looking at all of the data and the longer they take the more data they get. He also explained that Ryan is looking at surgery towards the end of the week but it still is up in the air as to the type of surgery. They may even decide they need more probes inserted to get more information.
While the information from the surgeon was good, we really need to hear from the neurologist at this point.
The neurologist on rotation came through only to tell us they don’t know anything yet. She explained that Ryan has a complex case because while the seizures and jerks seem to come from the back left, there are similar spikes in four different points of the brain. In other words, they still can’t pinpoint the source or the type of epilepsy Ryan has.
So, what is the answer you ask? The rounding neurologist, the primary neurologist, and the surgeon conferences Ryan’s case today and decided they need to insert more probes.
Again the nerves have kicked in for both of us but at least we know what to expect now. Ryan is scheduled to have the additional probes inserted this Thursday.
If he has any seizures before Thursday’s surgery, then maybe they can cancel it and reassess what to do in these next steps. But I think we will start wait to ask again for prayers and wishes for seizures until after the surgery and not before.
Today was Father’s Day. I hope that it was a better day for Ryan than it appeared to me.
There were no doctors making rounds. There was no physical or occupational therapies. There were no seizures. There was no visit from me or our son.
Ryan did get a visit from his dad. Ryan also got a video chat with our son. Ryan also had a couple donations to the Epilepsy Foundation made in his honor. Yesterday I was able to bring Ryan his gift from our son.
So, nothing to report but just to note that although Ryan spent Fathers Day in the hospital this year, the end result should give him many more with our son in the future. Happy Father’s Day to Ryan and to all