Me, Myself, My Brain & I

Could I have written something earlier? Of course.

Should I have written something earlier? Possibly.

Am I writing something now? … Pretty sure, yes.

Yesterday, I arrived at Abbott Northwestern Hospital at 5:30 in the morning. Fast forward about seven hours and I was awake and ready to be rolled up to my new hospital room where I’ll be residing for… for as long as it takes.

That’s the unfortunate thing about this process: I don’t know how long it’s going to last. I’m here, they’re reducing my medication levels, I’ll start having seizures, then they’ll eventually decide they have the data they need and I’ll be done. What’ll happen during that time and how long it lasts will be known when it happens.

In the meantime, my head is mostly covered in gauze—they inserted 12 electrodes into the left side of my head and 3 in the right side. (I don’t remember if I mentioned it earlier, but during my MSI testing, they did some language testing that normally only causes brain activity in the left side of the brain, but part of the right side of my brain was activated as well. Since the part of my brain that’s responsible for language is where these seizures are starting… juuuuuust in case, check and see if things might be starting on the right side as well.)

Aside from the gauze, there’s some discomfort from having things inserted into my skull and some swelling caused by foreign objects being inserted in places they technically don’t belong, all of which will go away over time. For right now, though, one of the sensors in my left temple doesn’t like it when I eat really solid or crunchy food, so my diet consists of things like pudding, ice cream, cottage cheese, sandwiches without eating the crust… all I need is to be maybe four feet shorter to become a toddler again.

Especially since I’m spending most of my time in bed with the exception of getting help to sit down on a toilet that they can roll up next to my bed. I opted to sit on my plastic throne for 10-15 minutes earlier tonight both to be somewhere besides my bed and also to appreciate a slightly different view. I’m fully aware that all of this is temporary: eventually, I’ll be able to eat whatever’s on the menu and walk to an actual bathroom under my own power, in which cause I’ll feel like a new boy! Or at least someone who can order a hamburger instead of pudding for each meal. When? Like everything else here in the hospital during seizure monitoring, it’s all just a matter of time.

I don’t remember how long ago the timeline got changed, but it’s been a while. And then life starts happening and writing blog entries gets shoved into the back of your head until a month later when you start thinking, “When’s the last time I wrote something? Oh gosh… life definitely started happening…”

The original date for the start of SEEG testing was June 17th, which didn’t work for the neurosurgeon, so it got pushed back until July 8th. And I don’t know where the scheduling conflict arose or for whom, but I got a call saying that July 8th wasn’t going to work anymore, so they were rescheduling the testing to start on June 10th instead. Is that coming up soon? Yes, it’s coming up very soon.

My current concern isn’t related to being nervous—my current concern is finishing everything that needs to be done before the 10th. I had a dental appointment about a week ago for the first time in two years, during which time they decided I needed a few fillings as well as a root canal. (So go get your routine dental cleanings done, kids!) That in itself isn’t a problem—this isn’t the first time my teeth have required some excessive work—but given the circumstances, it means I’m suddenly in a time crunch.

For those of you who’ve never had surgery before, a lot of dentists have policies regarding surgical procedures: you have to wait for six months before they start poking around in your month again. It’s not an industry-wide rule, but it makes sense: if you somehow get an infection from getting your teeth cleaned, that yucky stuff is going to get in your blood stream and head straight to the place where you recently had surgery. Getting an infection in my knee after having my ACL replaced? Wouldn’t have been a big deal. Getting an infection in my brain after staying in the hospital this summer? Yeah, okay, that could be considered a bigger deal.

And so I needed to schedule two additional dental appointments within the span of about three weeks, ’cause if it ain’t gettin’ done now, it may not get done until 2026. That sounds… unappealing to say the least.

If there’s anywhere I need to drive or errands I need to run, a similar issue arises. State law in Minnesota says that when you have an involuntary loss of consciousness, your driver’s license is supposed to be suspended for three months. Grand mal seizures definitely qualify as a loss of consciousness and they’ll be trying to induce seizures during SEEG testing for the sake of gathering data. So who’s got two thumbs and won’t be driving until mid-September at the earliest?

This guy! (Admittedly, that doesn’t have the same effect when you can’t see my thumbs pointing back at myself, but still…)

So if I need to schedule any other appointments or get something from the store that I’ll need in a month or two or just want to go cruising, I’ve got a limited window of time that seems like it’s closing faster and faster.

Granted, I accept that. I’m not upset with needing to get everything done NOW NOW NOW NOW NOW!!! I much prefer having SEEG testing scheduled a month sooner than originally planned, get it done and move on to the final step of full-blown brain surgery, then see where things go from there. That also means I have a shorter period of time to go shopping for hats or buy sunscreen for my scalp (they’ll need to shave my head so there’s no hair in the way for putting the sensors into my skull in June or putting a device inside there a month or two later…), but I’ll survive. If I don’t—if the lack of something to wear on my head is what finally kills me—then it was bound to happen pretty soon regardless. There are a lot of corners of cupboards to hit or floors to slip on or just swallowing my spit funny… something was gonna do me in. Since it hasn’t yet and presumably won’t soon, I better make plans to survive a little while longer, which means I better not wait until next year to get my teeth fixed.

The Epilepsy Foundation of Minnesota. Finding this group was how I developed some strong positive relationships with other people who have epilepsy.

Truth be told, I first discovered it when I was trying to find a new job. Some people advised that one way to find a new opportunity is to volunteer with an organization. I won’t go into all of the details about why or what you can achieve (in large part because I don’t remember those details). I thought about some things that really resonate with me and… “I have epilepsy!” I found the website linked above and filled out a volunteer form online, offering my assistance with Adult Activities. At that point, I was thinking that I could network with people, get a tour of their office, maybe even get a job there!

That’s not what happened. What happened is one of the things I hate most in the world: I waited.

I don’t remember how long it took the activities director to get back to me, but when I eventually got a response from Tammy, the activities chair, she was busy getting ready for Camp Oz, a youth camp they run every summer that gives kids a chance to enjoy a camping experience in an environment that’s safe for kids with epilepsy. She had a week to finish preparing for camp, then a week of camp, then a week of recovering from camp. And have I mentioned that I hate waiting?

But it ended up being one of the best things I’ve ever done. It never led to a source of employment, but it led to meeting a lot of really fun people and having a lot of really fun experiences. (Several years of volunteering later, one of those experiences was helping out at Camp Oz for a few days.)

I have a multitude of stories from working with the organization and I’m sure I’ll be sharing some of those in the future, but part of the reason I’m bringing it up in the first place is because I know I’ve expressed plenty of frustration and negativity on this blog up to this point. That said, I don’t want it to seem like epilepsy has been a giant black cloud hovering over my entire existence. I don’t go to bed and pray to God every night to fix my brain and make my epilepsy go away. Aside from the fact that I’ve accepted that “me, myself, my brain and I” are a package deal, not having epilepsy means I never would have reached out to EFMN in the first place. Given the two options, being involved with the Epilepsy Foundation has definitely been worth it.

The timeline for the SEEG, anyway… I know it’s been a long time since I posted anything here, but most times when I felt like writing something, it was just to vent, to express my aggravation at how slow things seemed to be moving and how many hoops seemed to be appearing that I needed to jump through.

“You should get a call sometime next week.” And then I called for an update at the end of the following week for an update and got no new information.

“You need to see your primary physician.” That seemed like a ridiculous waste of time, given that I looked at my records and I hadn’t seen him in over two years, so I’d need to update him on all of this new information and we’d talk about the potential clotting issue… why? Well, I discovered when I got there that the appointment wasn’t a consult—it ended up being my annual physical. Plus I updated him on all of the new information, we talked about the potential clotting issue, etc. (Sadly, I’m supposed to get another physical within a month before surgery… the surgery that involves putting the sensors into place inside my head… so after not getting an annual physical for a few years, I’m getting a second one a few months later.)

“We need to talk about your blood thinners.” I’m still confused as to why this keeps coming up and why I have to keep explaining the cause and the fact that blood clots are not an ongoing issue for me. The last time I was in the hospital for EEG testing, it lasted a week and a half and I got to walk maybe 15 feet to the bathroom and back a few times a day. That was pretty much the extent of my getting up and moving around to get the blood flowing in my legs. Thus, when they did an ultrasound of my lower legs a few weeks later, finding a bunch of blood clots… not that surprising. As a result, I was prescribed a blood thinner for three months. That was it. I’m not still taking it, so I don’t need to not take it anymore a certain number of days before surgery.

Dr. White’s office called me a while ago and set a tentative date of June 17th to start testing, it just needed to be confirmed by the neurosurgeon. Maybe two weeks later, I got a call from a number I didn’t recognize and the caller ID was a random name I’d never seen before. Under different circumstances, I might have just let the call go to voicemail—this time, I’m glad I answered because it was someone from Dr. Nelson’s office. June 17th wasn’t going to work. So it’s scheduled to start on July 8th instead. SEEG testing confirmed!

There are still a few hoops to jump through: the neurosurgeon wants me to get another MRI of my head so he’ll know where to aim the sensors inside my skull (no idea how many I’ve had done in the past, but the fact that I know my rate of falling asleep inside an MRI tube is slightly below 50%… that should give you an idea…), I need to have that pre-surgery physical… but I’m much more comfortable with hoops when I know I won’t jump through one, then have to wait three weeks just to find out about new hoops that’ll take even more time.

Having a date that’s official and won’t change (as long as I jump through the rest of the necessary hoops) is a relief. Will I be nervous as we get closer to July? Possibly. I don’t have a percentage of how often I’ve been nervous before this kind of testing before. That said, I’ll be sure to provide more updates in the future, good news or bad. (I promise not to wait until I have good news to share before writing the next entry…)

I had been waiting for a call from the neurosurgeon’s office (Dr. Nelson) for quite a few weeks and the phone finally rang yesterday morning.

One of my first questions was why this was necessary, given that Dr. White and I were fully aware what direction we needed to move in. The person on the phone told me that Dr. Nelson meets with all of his patients before scheduling an SEEG, so that’s what we were gonna have to do.

Dr. Nelson works in three different locations in my area: Woodbury, Plymouth, and St. Paul. That last one is the closest, so I said I’d like to schedule my appointment there.

“Well, he only works there one day a month.”

“Oh, no…”

Mind you, that was my inner voice speaking, but the person on the phone might have been able to hear what I was thinking if she’d seen my face. Instead, she explained that he was working there tomorrow [Thursday] and had appointments available at 11:30 and 2:30.

My wife and I drove to St. Paul and got to the office a little before 11:30, Dr. Nelson’s assistant brought us into one of the rooms, and we started discussing the situation before she eventually brought in Dr. Nelson for our consult.

What hadn’t occurred to me up until that point was that Dr. Nelson isn’t part of Minnesota Epilepsy Group—he was working at the John Nasseff Neuroscience Specialty Clinic, so he wasn’t part of that earlier surgical conference, he hasn’t been given a lot of information about me, myself, my brain, and I… so I filled him in on the details as best I could.

The SEEG will give more specific information than the MSI, so they’ll spend some time figuring out exactly where the sensors will need to go (where to put them to get through the skull at what angle, etc.), then I’ll spend 7-10 days in a hospital bed and not be allowed to move a whole lot… I’m hoping I’ll be able to get up and use the bathroom instead of just shoving a bedpan under my hospital gown, but who needs dignity, amirite? He said they’ll put some cuffs on my legs this time to make sure I don’t develop a bunch of clots again, but probably put me on a mild dose of a blood thinner for safety’s sake.

But he didn’t know that I only took a blood thinner for three months after staying in the hospital before. He didn’t know that Dr. White and I already talked about different types of surgeries. He didn’t know that extraction had already been ruled out because it can potentially cause some damage in the process. Given that the problem is in the language center of my brain and I’m currently employed as a proofreader (eyebrows go up, eyes get bigger and “Ohhh…”), I enjoy reading and writing in my free time… my quality of life would diminish significantly if something went wrong, so yeah, that type of surgery is off the table.

Before I can be admitted into the hospital, Dr. Nelson needs to make sure that he’s available, that Dr. White’s available, that the special room in the hospital for SEEG testing is available… so it could take a few months for everything to get in order. He said it might be 2-4 weeks before I hear back from his office, so I still have some more waiting to do, but when I get that call, we should be ready to put my hospital stay for SEEG testing on the calendar. (If that testing is supposed to fall over the weekend of July 26th, which is when my wife and I have tickets to see Nate Bargatze performing standup at the Xcel Center… how badly do I really need to have surgery?)

Yep, that was the message I got on Friday.

I spoke to Dr. White last Thursday, he said he’d take care of getting things scheduled at the hospital for my SEEG, so I figured it was just a matter of time.

I couldn’t remember if he said I should call in a week for another update, so I figured that even if he hadn’t, a call couldn’t hurt. I’d rather make the call when I didn’t need to rather than not bother to call when I should have.

I called to ask for an update, they passed the message along, and I got a call back later in the day.

Next week, I’m supposed to get a call from the neurosurgeon’s office (finally!). So from the time I spoke to Dr. White, it’s taken the neurosurgeon’s office a full month to contact me. But it’s not to put me on the schedule for seizure monitoring at the hospital!

Nope, his office will be calling to schedule a consult.

Why? Seriously, why?

I’ve accepted the fact that I’m going to have brain surgery. I’m not sure how long ago that was, but it’s been a while since we determined that medication is no longer a viable option. I expected it to take longer for my case to be presented to the surgical conference at Minnesota Epilepsy Group, but instead of weeks after talking to Dr. White, it was the next day (February 4th). Like I said before, it happened fast.

A full month later (which is very not fast), I’m not being scheduled for what will likely be the final test before surgery. No, I need to talk to the neurosurgeon first. This talk apparently isn’t something that can be done while I’m in the hospital for testing, so the current “God knows how long” timeline looks like this:

A month after the surgical conference, I’m getting a phone call to schedule a consult with the neurosurgeon, then I’ll need to wait for God knows how many weeks until the consult, then God knows how many more weeks until the SEEG… if the neurosurgeon comes to me during the SEEG to say he wants to do additional testing, extending the timeline for God knows how many more weeks until the next test(s) and then God knows how many more weeks until finally performing brain surgery… if those sensors are anywhere near a part of my brain that activates when I’m angry, they’re gonna think I’m having a massive seizure.

I honestly don’t remember how long I’ve worked with my current one: Dr. White. And that in itself should say something.

When I was diagnosed with epilepsy back in the summer of 2000, I became a patient at Minnesota Epilepsy Group. Dr. Gates (who for some reason got a real kick out of calling me “Dude”) might have worked with me for a very long time if he hadn’t passed away due to a brain tumor.

I think Dr. White may have been my doctor after that, so we may have been working together for over 20 years. We’ve been working together since before he started working in Minnesota. (If I remember right, his contract with his previous employer had a non-compete clause in it, so even though he was working with Minnesota Epilepsy Group, he spent a year working in an office that was just over the border in Hudson, Wisconsin.)

And when I say “working together,” that’s exactly what I mean. Dr. White provides his input, I provide my input, then we come to a collective decision. He’s very knowledgeable when it comes to brain surgery and I don’t remember how long ago he brought it up as an option. I told him that option was on the table, but it was on the back of the table—I wanted to exhaust my medication options first. He completely understood and accepted my decision. He would still tell me about surgical options from time to time, not to push the issue, just so I’d have the information in my head instead of reaching the point of no more medications and then he drops a bomb full of surgical information in my lap, leading to a brief period of full-blown panic before curling up on the floor in the fetal position, weeping silently.

After the surgical conference two weeks ago, he said I should call yesterday to get an update and find out what kind of progress he was making. I called in the morning for two things:

1. What’s the update?
2. I still hadn’t received a call from the neurosurgeon’s office about scheduling my stay in the hospital for the SEEG.

The person at the front desk was going to try to get Dr. White’s assistant on the line so she could talk to me. While I was on hold, I got a call from… Minnesota Epilepsy Group.

I didn’t expect to see that name on my phone’s caller ID, but I answered and it was someone checking in to ask how I was doing, was everything okay, etc. I gave her the same information about getting an update from Dr. White and no call about the SEEG. (During that conversation, the person on the other line from Minnesota Epilepsy Group hung up… oops.)

Later that afternoon, I got a call from Nicole, Dr. White’s assistant. She told me there were two reasons I hadn’t received a call about the SEEG, concerns they had about previous health issues that they thought might need further discussion or possible testing:

1. I had pneumonia in my left lung.
2. I had a pulmonary embolism in my right lung.

Those two things were the holdup. And I was pissed.

Why? Because they were both extremely likely a direct result of my last stay in the hospital for seizure monitoring.

We found out about both problems during different visits to the ER just a few weeks after I got out of the hospital. The pneumonia was likely due to a grand mal seizure and some stuff came up out of my stomach that was quickly inhaled into my lungs. Not only did they find the pneumonia, but after admitting me into the hospital, they eventually discovered a bacterial infection, fluid around my lungs… I was in rough shape.

As for the pulmonary embolism (a blood clot in the lung), during that next stay in the hospital, they scanned my lower legs, then asked if I had any pain down there. No… why? Because they found a lot of clots in my lower legs. As it turns out, when you spend a week and a half in the hospital with a bunch of wires glued to your head and the only times you’re vertical is when someone is there to watch you walk to the bathroom and back (maybe a handful of visits to a chair about ten feet away from the bed as well), the blood in your legs doesn’t move around very much. Guess what happens when blood doesn’t move? Clots. And one of those likely escaped from one of my legs and ended up in my lung.

So I was frustrated that my last stay in the hospital for seizure monitoring was the reason why they were hesitant to schedule my next stay in the hospital for seizure monitoring.

Of course, there’s no point in getting upset with Nicole—she was just passing along the information. I just explained my frustration and she said she’d pass it along to Dr. White. He’s on call this week, which means the clinic will give him Monday and Tuesday off… it was Thursday and I might not hear back from him until Wednesday. Another source of frustration.

But less than two hours later, I got a call. I looked at the caller ID… Dr. White. Nicole had told him about our discussion, so he wanted to call me back as soon as he could. I absolutely want them to be thorough in this process, take precautionary measures… safety is important when it comes to brain surgery, you know? But the fact that the only time those issues have actually been issues were immediately after being in the hospital… so he decided that we should get me on the schedule. It’ll likely be a few months before they’ll be able to get me back into the hospital, which is plenty of time for them to do their due diligence.

Has any progress been made since Thursday? I have no idea. Do I feel better anyway. Absolutely. When the current information is “You’ll eventually get a call from the neurosurgeon’s office for scheduling”… I don’t like floating in Limbo, not knowing when or if something will happen. When the current information is “Your doctor is going to get you on the schedule”… I’m comfortable knowing that it’s now just a question of when.

So to Dr. White, thanks for your call and thanks for understanding. I appreciate the fact that you listen.

I think those two are my current options for covering up what’ll likely be a bandage on the top of my head sometime in the near future (I’m assuming the hospital won’t use spackle to plug up the holes in my skull, then staple a wig onto my head, but I’ve been wrong before…).

I spoke to Dr. White (my epileptologist) yesterday about the surgical conference and he told me that it went well and there was basically universal agreement that the eventual result of brain surgery will be some sort of device inside my head, most likely an RNS (responsive neurostimulation) device.

But that’s not the next step. Because RNS is supposed to affect a very specific area in the brain—the area where the seizures start—they need to do a different test to find out exactly where that area is.

I’ve had several EEGs (electroencephalograms) done in the past, the most recent during an extended stay in the hospital for seizure monitoring back in September 2023. As soon as I arrived, they glued a whole bunch of electrodes to my scalp and began monitoring my brain wave patterns. They tapered off my medications fairly quickly to try to induce seizures, which effectively induced seizures fairly quickly as well.

For context, the seizures I typically have these days affect my left temporal lobe, the language center of the brain. Thus, when I have a seizure, I might stop speaking mid-sentence because I don’t know what I was about to say—the words are just gone. If I’m trying to listen to something, whatever’s being said doesn’t make sense. If I’m trying to read, same problem. Language is basically out the window. After maybe 30 seconds, I’m okay again. I might need a little help remembering what I was saying, but if there are no words being spoken at that time, you might be standing next to me and never know anything happened.

It was only a few days into my hospital stay when I got a call on the hospital phone. I answered and didn’t recognize the voice. I couldn’t really tell what the voice was saying, but I tried to respond to whatever it was saying (I’m told it was basically gibberish). It wasn’t long before I realized that the person I was speaking to on the phone was my older brother. When the call began with gibberish and ended with “Love you, bud”… you can imagine why my wife was spooked. And what showed up on the EEG?

Nothing.

The area where the seizures start is too far away from the surface of the brain, so the sensors on my scalp couldn’t detect the abnormal brain wave activity. Thus, when I head back to the hospital in a few months (I don’t know exactly when, it hasn’t been scheduled yet), we’ll be doing a slightly different test: an SEEG (stereo EEG or stereoelectroencephalography).

Instead of gluing the electrodes to my scalp, they’ll be inserted deeper inside the skull and thus be able to detect abnormal brain activity a lot more accurately. Not just detecting the activity, but where the activity originates. Since the RNS device sends a little electrical charge to the brain to stop that activity before it becomes significant and turns into a seizure, finding that origin point is kind of important.

And so after my stay in the hospital, I’m going to have at least a partially-shaved head (I think I’d prefer shaving all of it rather than having a weird bald spot right in the middle, but that’s just me) and some small holes where the electrodes were inserted. Call it vanity if you want, but I feel like I’ll want to cover that space up while the spackle dries underneath the bandage, thus begging the question: A ball cap, a fedora, or do I need to go shopping?

I honestly didn’t expect this to happen so quickly.

I’ve been a patient with Minnesota Epilepsy Group since 2000. After talking with my current doctor about the lack of remaining medications and potential surgical options, he explained that they have a weekly surgical conference and present one patient’s case to the entire staff. After hearing all of the information, everyone gets their input and the collective decision is what’s presented to the patient. My previous understanding was there was basically a queue, multiple patients in line ahead of me and it could be a while before they would discuss my case.

Instead, I spent about an hour on the phone with the doctor on Monday afternoon clarifying as much information as possible, making sure everything was accurate for his PowerPoint presentation the next morning.

So yes, I became a case study yesterday. And my one big request to people at this point is that you continue to call me Shawn, not “48-year-old Caucasian male.”

This title seemed a bit unwieldy—it’s a lot of letters to type—so when choosing the web address, I shrank it down to the latter two items: “MyBrainandI.com”.

So after coming up with the title for this blog, the big question is “Why?”

And it’s because it felt like the right thing to do. Like something I was supposed to do.

I have epilepsy.

Most people have probably heard about cancer and COVID and beheadings before, but what’s epilepsy?

That’s where I come in. My first seizure was in 1991, but it’s possible to have a single seizure and that’s it. As a precautionary measure, a doctor had me start taking an anti-seizure medication right away.

If the medication continued to prevent seizures, you wouldn’t be reading this, but it didn’t. I started having seizures maybe five years later (I didn’t realize that’s what they were at the time) and I was officially diagnosed with epilepsy in 2000.

It’s been a long journey since then. Different kinds of seizures, different kinds of medications… and now I’m out of medications. Everything that’s available either doesn’t solve the problem or has side-effects that would make the solution worse than the problem.

Thus, the final way to prevent seizures (aside from beheadings) that will be happening sometime in my near future is brain surgery.

So I’m sharing my epilepsy journey with all of you. Seizures, medications, brain surgery… all of it. Providing a personal perspective to information that you might only read in a textbook from all four of us: my, myself, my brain & I.