The Deep Brain Stimulator for Epilepsy: Progress

The first time the Deep Brain Stimulator was activated, Robert’s seizures increased. 

No, that’s not supposed to happen. 

I deactivated the device but hoped we would be able to somehow, eventually, use all this new hardware in Robert’s body. The leads, the battery pack – everything he went through to get it cannot be for nothing. 

Robert’s neurologist sent me a message to come in at the end of August to try again. I was so happy that there was another way this device just might work! 

I had a management meeting at work in the morning and Robert’s appointment in the afternoon. My brain was getting a workout today! Good thing I had fresh memories of our beach vacation floating around in my head to keep the stress at bay. 

Dr. K, Robert’s epileptologist, came into the room as enthusiastic as ever. He clearly cares about his patients and is as disappointed when a treatment doesn’t work for Robert as we are. He will not be deterred, however! 

I sat with my list of questions and Robert sat with the box holding the Patient Programmer (basically, a phone with an app) and a wireless recharger (the part that goes over the battery pack in his chest). 

Dr. K explained that he talked with Stanford who conducted the DBS study that Robert had been in. The setting they used in the study was different than what Dr. K started with during the first activation. He was confident this different setting was going to have a better result. 

How will the setting be different? 

I am not a scientist but Dr. K was both patient and brilliant at explaining the process to me. I created a rudimentary illustration to show to my fellow non-scientists (apologies to any readers who are actually scientists!). 

Basically, the first setting had sections 1 and 2 activated. That created a constant electrical current in the brain but, for Robert, it was too much too soon and it caused him to have seizures. 

For this second try, only section 1 was activated. That allows for a more diffused electrical current which should be easier on Robert’s brain. We start at Setting A which is 2 milliamps in just that section 1 (in both leads). After two – four weeks I can increase it using the Patient Programmer and move the device to Setting B. That will deliver 3 milliamps – still in both leads but only in section 1. 

If all goes well, a month after Setting B is activated we can go to Setting C (4 milliamps). Dr. K says we can eventually get up to 7.5 milliamps but that there is no statistical difference in performance between 5 and 7.5 milliamps. 

I asked if we should leave it on longer this time if it does cause seizures again. Maybe Robert’s brain needs to get used to it? Dr. K said that might be a solution but also explained there were other settings he could try. He sounded very confident that we would be able to find a setting that worked for Robert. He said the amount of people that have an increase in seizures from the DBS is in the single digits. We just need to find the right setting for Robert. 

Photo of leads
(Credit: Medronic)

Once it was activated again, Dr. K asked Robert if he felt any tingling. Robert said he didn’t feel anything (that is not unusual but some people do have a sensation on one side of their body when it is activated. That’s nothing to be concerned about.). 

We talked about reducing his medications once we know it is working. Dr. K is very concerned about Robert continuing on the Depakote since it is affecting the ammonia levels in his liver so much (which causes confusion, sleepiness and mobility issues). 

If this DBS actually starts working I will be thrilled to start reducing the meds. Getting Robert to have more functionality and mobility not only helps him but us. It also would greatly help once we are no longer able to care for him (I have to think about these things). 

We left the office very hopeful (at least I did; Robert had long since fallen asleep while Dr. K and I talked about him). 

Robert had a couple of seizures over the next few days but nothing like when we first activated it. Eventually, they subsided. 

Was this working?? 

Not yet. Robert’s typical seizure cluster came pretty much on schedule (every 2 – 3 weeks) and his most recent one was a doozy. He had close to three dozen seizures in 25 minutes. Even his rescue med (Nayzilam) took longer to work than usual. 

Okay. The DBS at the lowest setting is not working. We didn’t really expect that setting to be the one that works but at least it didn’t cause more seizures. 

Three weeks after the initial re-activation and a week after the seizure cluster, I increased the device to Setting B. Robert did feel like he was being “tickled” once I increased the setting but it went away after a few minutes. 

The plan is to increase the device to Setting C in 3 – 4 weeks. If we see fewer seizures, that’s when we can start reducing his medications. I don’t want to get ahead of ourselves or jinx anything since we just got to Setting B but we are on our way! 

I hope this information helps you understand the Deep Brain Stimulator from a patient or caregiver perspective. As I mentioned, I am not a scientist or a medical professional but I am happy to answer any questions about this surgery and the whole process. 

Thank you for following Robert’s journey to, if not seizure freedom, at least seizure (and medication) reduction. I know a lot of people are rooting for this to be successful! 

Oh, and to everyone asking the most important question: Yes, of course, Robert got a chocolate shake after the activation by Dr. K and chocolate ice cream after the increase to Setting B! 

The Deep Brain Stimulator for Epilepsy: Take 2!

One of the questions asked about Robert getting the Deep Brain Stimulator was: what do we hope to get from it? 

While many may think the obvious answer is to reduce seizures the more complete answer is a bit more complicated. 

At this point in Robert’s life, the anti-seizure medications are what are causing so many problems. High ammonia levels (from Depakote) leading to reduced mobility and functionality and increased confusion. Vimpat literally making him lose his balance and his ability to walk (putting Robert on a very low dose has helped with seizures but any increase will negatively affect his mobility). 

Robert is on five different seizure medications along with a bunch of other meds to counter-act side-effects of those medications. He’s on so many a doctor seeing Robert in the hospital questioned him being on so many and said he’s never seen a patient on that many anti-seizure medications. The doctor clearly needs to spend more time in the neurology unit. 

(He tried to make changes to Robert’s medication regimen but anyone who knows me knows that didn’t happen.)

Our hope is that this DBS will control Robert’s seizures so we can reduce his medications and he can maybe even regain some of his functionality and mobility. 

That’s not asking too much, right? 

Robert went through the two surgeries and we were able to move up the appointment to get the DBS activated. (Thank goodness the neurologist was on standby for jury duty and could squeeze us in!) 

Time to activate this baby! 

At the appointment, Robert and I patiently awaited the neurologist. I reviewed my questions I had written down and Robert cracked jokes. 

I thought about how fascinating this device is, and, really, nothing short of a medical miracle. Leads go into the brain, hook up to a battery in the chest and it can be controlled with a phone and a hand-held programmer device that goes over the implanted battery to activate it. 

Robert has been very lucky with the quality of his epileptologists even though he’s had several of them. His current neurologist (Dr. K) is kind, smart and takes his time to explain everything. He knows we’re a team and he is as hopeful about this working for Robert as we are. 

Another neurologist came into the room with Dr. K and she introduced herself as a fellow. She was learning about the DBS which I didn’t mind at all. They are part of an award-winning teaching hospital and I am thrilled to have these talented doctors and students as part of Robert’s care team. 

Dr. K explained the DBS has three settings and delivers a constant electrical current. It starts out on setting A which delivers a low electrical current, then after a month (if it’s not yet controlling the seizures), the patient (or caregiver) can move it to setting B which delivers a little more of an electrical pulse. Setting C is the highest setting and that is where most patients end up but it takes three or four months to get there after the initial activation. 

Dr. K activated the device, showing me the different settings and explaining some side-effects to watch for (depression or tingling on one side of the body). He explained how to control the device at home and said I could increase it to setting B after one month if Robert seemed to be tolerating it okay. 

He said another MRI may be needed to be sure the electrodes are still placed correctly but he didn’t think that was necessary just yet. 

It seemed simple enough to activate and control. It’s basically an app on a phone so I was comfortable with it once I figured out how to open the app and he took me through the steps to control it. 

How will we know it is working? If Robert has fewer seizures, it is working! Simple as that. Robert’s seizures come in clusters every two to three weeks. If the clusters don’t come, it’s working. If his seizures come as frequently as usual, we move to setting B. We left the office feeling very hopeful. 

This is going to work! I just know it. 

The next day Robert had a seizure cluster. I brushed it off since he was “due” (his seizures are pretty regular so I didn’t find it unusual that he had any). 

The day after he didn’t have any. Phew! 

The day after that, he had another cluster. Then another the next day.  

He continued to have seizures almost daily for six days after the DBS was activated. 

This was not a side-effect anyone expected. 

I was in contact with Dr. K’s office and was told on the sixth day to turn it off. 

It was heartbreaking to deactivate it. Robert had gone through so much (heck, we all had) to be able to use this device and now it is causing him more seizures. Knowing he had the electronics in his head and chest and it was just sitting there, not being used, going through all the surgeries and MRIs and appointments . . . 

Heartbreaking. 

I turned it off but did so while hoping the seizures would continue. I’ve never wished for Robert to have seizures but just this once I wish they would continue. I was hoping the seizures were caused by something else and that it was just a weird coincidence they happened after the DBS was activated. 

No such luck. 

The seizures stopped. He’s had a few (his normal) since then but nothing like the daily clusters he was having while the DBS was on. 

We had planned a long weekend beach vacation for later in the month and made the most of it. It was what we all needed after such a stressful and disappointing process the last few months. 

On the last day of our vacation Dr. K messaged me and asked if we wanted to try again with a different setting. Yes! I am hopeful there is a setting that Robert’s brain can tolerate. Maybe there’s a setting below A that we can start with instead. Maybe we need to leave it on longer than a week and let his brain adjust. Maybe we need another MRI to make sure everything is still located where it’s supposed to be. 

Maybe there is still a chance for this DBS to work for Robert. 

Today we go in to try again. I have more questions. Robert will have more jokes. We know we have an army of people saying prayers, sending well wishes and hoping for the best for this second try. 

Hope and support are what we are hanging onto. 

The Deep Brain Stimulator for Epilepsy

It was a whirlwind of activity after making the decision in May to move forward with the Deep Brain Stimulator (DBS) for Robert. 

Sure, we started thinking about it three years ago but once we made the decision this year it was a flurry of pre-op appointments, MRIs, more MRIs, CTs, surgeries, and post-op appointments. 

I didn’t expect as many pre-op appointments so consider yourself warned if you decide on the DBS. Robert also ended up having three MRIs which is two more than we planned for. Robert cannot lay flat on his back without pain (which I mentioned when making the appointment) but apparently that was interrupted as “oh, I’m sure he’ll be fine.” 

Well, no. That means he will not be able to lay still. Really. He was squirmy throughout the entire procedure which made it last even longer than it should have. It also didn’t give the neurosurgeon good enough pictures to map the DBS placement. 

We tried for MRI #2 (with sedation this time) but Robert fell at home the day of his appointment and was so weak I couldn’t get him in the car to get to the appointment. Through a herculean effort by the surgery and MRI schedulers, they got him in two days later. I arranged for a transport van so I wouldn’t have to count on Robert’s ability to get in and out of the car. 

They tried MRI #2 with a light sedative which didn’t work so they had to completely put him under. Finally, the MRI was done! 

Surgery was scheduled for the following Monday morning (again, we relied on a transport van and ended up using a couple of different transport services for all of Robert’s appointments and surgeries just to ensure we got to each one). As Robert was getting prepped for surgery the surgeon came in and said the MRI wasn’t done properly (the surgeon ordered three particular scans and only two of them were done). He couldn’t place the DBS without another MRI and he wasn’t sure if the MRI could be done that morning because of all the moving parts (holding a surgery room for post-MRI, getting the anesthesia team on board to put him under for the MRI, and figuring out if there was even an MRI machine available!). 

It's 6:00 a.m., it’s taken a huge effort to get Robert to this point and now we may not be able to do the surgery today? I wondered if this was a sign. Maybe we shouldn’t do the surgery after all. I stared dumbfounded at the surgeon. A few tears of frustration leaked out. He was very apologetic, the nurses said they never had seen this happen before, everyone said how the MRI team never makes these mistakes and it was unheard of to see this happen. 

I get it. Mistakes happen. The whole MRI situation was chaos anyway so maybe the techs were overworked that day trying to squeeze us in and just got sloppy. Whatever the reason, the end result was Robert had to get another MRI before he could get his surgery. 

The surgeon was impressively calm talking to me about the situation but I could tell he was on a mission. I don’t know what he did or how he did it (or if anyone got fired over this ordeal) but he made the MRI happen. Robert was rushed off to get an MRI with the plan to do the surgery immediately afterwards. When Robert was wheeled away, the surgeon told me he was not even sure the hospital would hold open the surgery room for as long as he needed but he was going to give it a shot. 

That was surgery number one. The MRI got done (properly), the surgery room was held open and Robert got part one done of the DBS implant. 

I am incredibly fortunate that none of this rattles Robert. He doesn’t worry, he just always goes with the flow with a smile for everyone no matter what is going on around him. 

Usually, patients are in the hospital for just one night after the first surgery. Robert stayed three nights due to chest congestion and his white blood count going up. I was worried about aspiration pneumonia and insisted he get put on antibiotics before it got out of control but the doctors wouldn’t do it. (I was so insistent that a nurse practitioner put him on them for a day before the doctor overrode her.) 

The DBS is implanted in two stages. The leads are placed in the brain during the first surgery and the battery is placed in the chest and hooked to the leads during the second surgery. 

The second surgery was much less eventful – oh, well, aside from the earthquake that happened during it. Apparently, we felt it in the waiting room, the nurses felt it during surgery but the surgeon didn’t notice it at all. Because, apparently, he has one setting: cool as a cucumber. 

The last piece of the DBS process is to have it activated. After Robert’s second surgery, we were sent home with a box containing everything needed to activate the device. The surgeon doesn’t activate it as that’s done in the neurologist’s office. The appointment should be within a week of the second surgery but ours was six weeks out. The surgeon was going to try to work some more magic and get us in sooner with Robert’s neurologist. 

Between the surgeon’s message, my calls and the luck of the neurologist not being called for jury duty, Robert was able to get an earlier appointment. 

DBS activation was on the books! 

My next post will be about activating the device but I also want to answer any questions you might have about the Deep Brain Stimulator. I’m not an expert, of course, but as a caregiver who has gone through this with my brother I can possibly address some concerns or questions you have if you are considering the DBS. 

Hail Mary

Robert will be getting the Deep Brain Stimulator (DBS) at the end of June. 

It feels like a full circle moment since at the time we started caring for him, he actually had a Deep Brain Stimulator already implanted. The DBS wasn’t yet approved by the FDA but he was in a study through the UCSF Epilepsy Center. Unfortunately, he developed an infection in the area where the stimulator part is implanted in the chest and it had to be removed. His infection was so severe that they also needed to do a separate surgery to remove the leads that are implanted in the brain and he couldn’t continue to participate in the study.  

It was disappointing but at least he survived the infection. (Robert has cheated death more times than I can even count.) 

Year after the device was removed I found out that Robert was in the part of the study with an active DBS and that it had helped reduce his seizures. The DBS was eventually approved by the FDA for treatment of severe epilepsy so his epileptologist suggested it as something to consider for Robert. 

We talked to the surgeon in 2018 and, because it was such a hectic year with my husband’s health issues (not to mention me having a stroke that year!), I put the DBS on hold.  

Robert continued to decline: he had frequent clusters of seizures, reactions to medications, hyper-ammonia from medications, worsening of mobility, functioning and memory (a result of a combination of seizures, medications and his neurodegenerative process). 

The doctors tried new medications; various doses of medications; weekly physical therapy. 

Richard and I tried a home caregiver (fantastic but she can’t help with Robert’s worsening physical mobility); we adjusted how we care for Robert (forget about daily baths or even street clothes); bought a new bath chair and a bedside commode. We learned tricks from the physical therapists on how to move him without hurting ourselves. We learned from the hospital nurses how to change him in bed when he was having a really bad day. We have a script for a hoyer lift. 

The doctors adjusted to the decline. We adjusted to the decline. Robert continued to say he was doing “super, amazing, excellent and great” and didn’t even seem to notice a decline. (Only rarely does he get frustrated with his inability to stand or transfer.)

Robert’s support team has a deep bench (as they say in football) and we made as many adjustments as we could but, at this point, we need a Hail Mary. 

I’m a huge fan of college football so I know a Hail Mary can work and it’s so exciting when it does. But that period when the ball leaves the quarterback’s hand and is sailing through the air and you don’t know if it’s going to be caught – that’s when you hold your breath and pray. 

Robert has prayed his entire life for his seizures to go away. 

Moving forward with the DBS is probably the last chance we will have to give him that. 

I personally don’t think it will completely take away his seizures but I do hope this device will give him better seizure control. My hope is that it will allow us to reduce Robert’s medications which would then help with his mental fogginess and, maybe - just maybe - even improve his mobility. 

That’s my hope. Maybe it’s more of a wish. It is probably as likely to happen as Robert’s prayers for zero seizures but I need to give him this chance. 

I need to try the Hail Mary.  

We will worry later about what comes next if this doesn’t work. 

For now, we have one more chance for a win. 

Time to hold our breath and pray. 

The Vaccine with a Side of Guilt

It's taken me a few days to post this because, well, I don't like being judged. (Just wait until I post this on Twitter!) 

I am prone to feeling guilty about everything anyway but this might be something others can relate to so will risk the judging. 

Because Richard and I are IHSS certified in California in order to care for Robert, we are eligible to get the vaccine. Richard got his appointment first but I had trouble getting one (mainly because I completed the survey incorrectly!). Rachel & Matt helped me secure an appointment when more sites opened up so I got my first shot last Friday. I definitely don't feel like I should be in the same category as "real" healthcare workers but I have a letter from IHSS that says otherwise. But, you know, guilt. 

What I feel really guilty about is that Robert also got his shot. The nurse who gave Richard his shot said Robert would be eligible under the care home category (which, in California, is in the same category as the healthcare workers). We're not actually a board & care home but the nurse said he qualifies. So Robert and I had our appointments on the same day. I was prepared to hand over my IHSS letter. No one asked for it. I was prepared to answer questions about Robert's eligibility and accept he wasn't eligible but there weren't any questions. 

We both got our shots. (And Robert got a chocolate shake afterwards for being such a good sport about it.)

I got a heaping serving of guilt. I feel guilty that maybe the nurse gave Richard wrong info and Robert really doesn't qualify; I feel guilty that I believed the nurse even though it didn't seem quite right; I feel guilty that we got our shots before others who need a shot got theirs; I feel guilty as a mom getting my shot before my kids get theirs (I recognize that as run-of-the-mill, typical mom guilt).  

So, yeah, guilt. 

I don't know if anyone else feels guilty about getting the shot before others do but I'm guessing there are a lot of us. Hoping the supply and distribution of the vaccine ramps up so everyone who wants a shot can get one. 

And I can stop feeling guilty!