Part 1: The Significance of June 28th

I launched this site June 28^th 2021, on my seventh near-death-iversary. Every person has a birthday, and everybody’s life eventually comes to an end, but only a small subset of us has a near-death-iversary. Later this year I’ll have my ninth. I was diagnosed with epilepsy when I was six. After decades of unsuccessful attempts to control my seizures, in spring 2014, I opted for an elective temporal lobectomy. My neurologist thought the procedure would bring an end to the uncontrollable seizures, so on April 29, 2014, a neurosurgeon used her scalpel to remove the seizure-triggering part of my brain. This option terrified me, but at the time, my kids were five and seven years old, and I’d determined that managing seizures and parenting was an untenable combination. My initial recovery weeks were smooth until June 28, 2014, when my brain’s neurons went haywire, due to pressure from a subdural hematoma. A hematoma – which can be fatal – is a collection of blood between the brain’s covering and its surface. Mine had apparently developed following the elective brain surgery.

I was at Assembly Square mall with my family, choosing sneakers for my son, Liam when my arm began to jiggle wildly. I found my husband Mark in the next aisle.

“I can’t control this,” I said, thrusting my quivering arm toward him. I was coherent and freaked out. Mark led me to a bench typically used for trying on shoes, and held my shaking arm in his lap.

“Okay, try to relax,” he said. He sat down next to me and put his arm around my shoulders, in an effort to calm me. But then I felt a familiar grip on my gut – the sign of a seizure. Unlike the complex partial seizures I’d typically had prior to surgery, I could feel this one was huge. I couldn’t contain the shuddering in my arm. There was no way I could deep-breathe my way out of this seizure. I could barely keep myself upright. And then I was out….

Luckily, my buddy Rich was with my family that fateful day. Rich took the kids to LegoLand, which adjoins the mall (they offered free tickets when they saw the ambulance cart me away), and Mark accompanied me to Mass General Hospital. Mark gave the neurosurgeon on call permission to perform an emergency craniotomy, as a lifesaving measure.

Seven years later, I launched this website partly to honor my near-death-iversary, because I believe it’s something worth celebrating. The mortality rate for patients with an acute subdural hematoma ranges from 50%-90%, and only 20%-30% of patients who recover have full or partial brain function. [1] Every year, during the days leading up to June 28^th, I acknowledge how lucky I am to be alive and healthy. I Google the names of the neurosurgeons who performed the emergency craniotomy, to learn about their recent accomplishments, and express silent gratitude at their images on my computer screen.

The Patient Knows Best

My other incentive for this website launching is to share the important takeaways I learned about patient self-advocacy. A patient plays a key role in her own successful recovery, healing, and well-being, no matter what the procedure or diagnosis. This principle applies to chronic illness management, recovering from a major health procedure, or recuperating from a significant health setback. While practitioners’ knowledge base is critical, it is typically acquired via books, practice, and training. A patient’s symptoms and side effects are a wellspring of firsthand experiential data, critical to the provider’s ability to determine the patient’s most effective treatment plan.

I am not sharing my story to vilify medical practitioners. My life was both transformed and saved thanks to neurosurgeons’ training and expertise. That said, my recuperation experience taught me the importance of speaking up in doctors’ offices. No matter how knowledgeable a medical provider is, she does not have the firsthand experience of her patient’s symptoms and side effects. Regardless of how good or experienced medical providers are, they are not in our bodies, experiencing whatever pain, peculiar symptom, or sensation is taking place there. At a visceral level, a patient is always her own best expert, as she knows the whole corporal deal. Given that the patient knows the most, sharing all symptoms and medication side effects with doctors is critical to getting good care. By extension, empowering patients to track and communicate their symptoms’ nuances and details with their doctors is a key component of ensuring an appropriate, optimal treatment plan.

Every June 28th I reflect and quietly celebrate. Perhaps thanks to the magic of seven, 2021 was also the year I had enough band-with, time and motivation to share my story and tips online, in hopes that my readers have better patient experiences after reading them. Although a lot of time has elapsed my tracking was careful, so I’m confident this is an accurate depiction of my recovery.

[1] http://neurosurgery.ucla.edu/patient-services-brain-injury-program#b

Part 2: June 29, 2014

I wake up the next day in an MGH hospital bed. The last thing I recall is the grand mal seizure steamrolling my brain and body in the shoe store. My first thought is, Oh crap. I had a seizure – how disappointing! Can we not tell my parents? They’d been wary of my decision to have the temporal lobectomy, worried it might lead to a horrible outcome. In that moment, I just wanted to hide my brain’s failure from them. Even after a friggin’ brain surgery, the misfiring neurons could still take over! How could this be? My thoughts are interrupted by words floating above me, from a voice near the bottom of the bed.

“This emergency surgery is in no way related to the operation you had in April.” Huh? Surgery? What the? I want to ask questions, but I can’t speak, as there’s an endotracheal tube threaded down my throat. Later, I would learn that the better part of a day had passed since I was in the shoe store. As I reemerge from the anesthesia-induced fog, I attempt to make sense of the doctor’s words, but I am distracted by overpowering thirst, and an irritating ache in my throat from the tube. I see Mark near the bed and feel some relief – he could explain what was going on! But then I remember I still can’t talk. Dammit!!

Waking up

Mark sees me stirring and takes my hand. “You’re up,” he noted as his lips curled up into a weak smile. Wait, hadn’t we done this before? I can’t speak, so I do the next best thing I could to express myself: I trace out letters on Mark’s green shirt. F-U-C-K. Mark’s feeble smile spreads across his face. Looking back, I imagine how reassured he must have felt when he saw I could spell a word and articulate my feelings, if only in writing. In retrospect, the hope that simple expletive probably conjured up is almost comical, but of course the situation was critical. I am relieved to see Mark’s smile.

That day launched what I nicknamed our bummer of a summer. Once again, I had to endure the nurses’ drills. Every couple of hours they’d rouse me out of my dozy state, to verify I knew the year and the president’s name. They’d doubled my Keppra and administered Oxycodone. I was still reeling from the surgery’s effects. Simply sitting in bed and having a basic conversation required enormous effort thanks to the pressures in my head. I was a woozy mess. Mark was often around during this phase, reading the paper. Each time I woke, I noticed the same tentative smile cross his face, as he saw me come to.

“I can’t believe this happened. The seizures were supposed to stop after brain surgery, but they’ve gotten worse.”

“The doctor said they still might stop.”

My head was spinning

“He did? Tell me more.” My head was spinning, so I couldn’t fully take in Mark’s explanation, but I would hear it again from the doctor. The trigger for the grand mal at the grand mall (as Liam liked to call it) was different than the one for the seizures I’d had prior to the first surgery. That seizure was caused by a slow dripping of blood from a low-pressure vein that was stretched between my skull and brain near the site of the first surgery. The dripping happened over a couple weeks after the April surgery. The pressure between my skull and brain lining created a hardened blood clot that strained my brain. When the strain became too much, I lost control of my left arm while in the shoe store.

Apparently, that pressure might cause anybody to have a seizure, but where I had epilepsy, I was even more prone. With the hematoma removed, the doctor said I was no more likely to have the decades-old chronic neuron misfiring problem than I was before this past weekend. While his words were a relief, they didn’t soothe my aching head. Or change the fact that I had a second scar on my scalp, wider than the first.

Below is a photo. In fact, this photo was taken in May after the first surgery. The scar under the black line is from the temporal lobectomy I had on May 29, 2014. I added a black line where the second scar is, so this doctored picture is a reasonably accurate depiction of what I looked like post-craniotomy. The hand-drawn line represents the series of metal staples required to stitch up the incision made by the neurosurgeon during the craniotomy.

Part 3: June 30, 2014

I woke up the next day and continued stewing. I’d had a grand mal seizure despite the temporal lobectomy – even that drastic step failed to keep my seizures under control. I felt scared, guilty, and pissed-off. Surgery was supposed to stop – or at least decrease – seizures, not increase their severity. It was certainly not supposed to lead to hardened blood clots forming in my brain’s lining! Later, the doctor on call examined me.

“The clot is removed, and the CT scan showed a decrease in swelling.” The doctor. examined my scalp. “The incision is clean and dry – it’s healing nicely. We think you can go home today.” It’s funny, I had been agitating over the possibility of having to miss my brother’s July 4^th wedding later that week, but once the doctor announced my release, I was nervous.

“Are you sure it’s okay to leave?” I asked.

“Yes. “We’ve doubled your Keppra, which should prevent seizure activity, but you should probably not be left alone for a few days, and you need lots of rest.” Her orders of bed rest and 24/7 “Laura-watch” left me feeling shackled – a prisoner of my brain.

“You should avoid any bending or heavy lifting or exercise other than walking for six weeks,” she added. With that, she sent us on our way with a bottle of Oxycodone, and a list of forbidden activities that included twisting, heavy house cleaning, and aerobics. I couldn’t imagine doing anything other than lying in bed. Hopefully, my brain wouldn’t go off the rails and bring on another seizure…. Although I was scared by this possibility, I was too tired to protest the plan, and part of me was happy to go home.

I spent two days sleeping

I woke up occasionally, only to feel slammed by the ache in my head, and the crappy state of my body. Then I’d take an Oxycodone, and drift back to sleep. Mark brought me food a couple times, which I nibbled at. My sister, Greta took over “Laura-watch” on my second day home, so Mark could go to work. That night I woke up hungry from my drug induced nap and decided to seek out food and Greta’s company downstairs. Although I hated that “Laura-watch” was required, I was grateful Greta was there. I found a peach in the kitchen and sat down next to her on the couch. She had brought her kids with her. Eliana and Gabriel were close in age in Liam, and I could hear the four cousins’ banter from the bedrooms.

“Sounds like they’re having fun in there,” I said nodding toward the kids’ rooms.

“Yeah, they’ve been fine. The girls are in Amelia’s room, the boys are in Liam’s. Mark called a little while ago,” Greta added. “He’s on his way home. We’ll head home when he gets here.”

“Good. Thanks for coming today.” I bit into the peach, which was perfectly ripe. I savored its sweetness, reminiscent of long summer days and homemade pie. Then I noticed a tingling in the fingers on my left hand. The prickling felt like the sensation brought on when circulation is cut off, and your hand falls asleep. Suddenly the vague tingling progressed farther up my limb, to uncontrollable stiffening in my left arm. Oh Crap!

“Laura! Are you okay?” Greta looked panicked as she reached for my shoulder.

“I don’t think so. I’m probably going to have another seizure!” The kids heard Greta cry out and came to the living room.

Another seizure

“Is Mom having another seizure?” Liam asked, as Greta called 911 from her cellphone. He looked scared. I longed to scoop him into my arms and assure him everything would be okay, but I was physically incapable, and totally uncertain. Instead, I listened to Greta giving data to the respondent on the other end of the call, as the seizure hijacked the rest of my body. My left arm was still shaking, flopping up and down against the velvety red couch cushions as I lay flat on my back. The symptom reminded me of the grand mal I had at the shoe store the previous week. This was going nowhere good.

Later Greta would tell me that when she saw the left side of my face drooping, and my limbs stiffening, she felt compelled to take the peach away from me, because she was afraid that I was going to choke on it. She thought the symptoms looked like a stroke. The last thing I noticed before blanking out was the pillows’ cushy support beneath the length of my body. Apparently, Mark beat the medics to our house and accompanied me to the hospital. I woke up the next day with a splitting headache in an MGH hospital room, Mark beside me. This was a frighteningly familiar scenario.

“I had another seizure, “I said, defeated. Once again, my brain chaos got the better of me.

Avoiding surgery

“Yeah – the seizures went on for a while after we got here. The doctors were able to stop them with medications – no surgery this time, at least,” he said with a weak smile. Months later I read my medical records, and learned they’d administered Ativan as well as Midazolam – no wonder my head hurt so badly. Ativan is often administered as a quick-fix anti-convulsant, but Midazolam is typically administered prior to surgery to help erase a patient’s memory. So, the medics must have thought surgery might be necessary.

“Where are the kids?”

“Greta took them back to her house.”

“Good. Dan and Jenny’s wedding is tomorrow, right?” With multiple seizures and hospital stays I was losing track.

“That’s right – tomorrow’s Friday July 4^th.”

“I wonder if I’ll be able to go….” I wanted to participate in this momentous occasion. I wanted to take everything in stride and carry on. The doctors heard me grousing over possibly missing Dan’s wedding, and wondering if I’d be able to leave. Maybe that influenced their next steps: They released me that night after adding a third medication, Dilantin. Although I was tired and cautious, I wasn’t nearly as wiped as when they sent me home post-surgery on Saturday.

Part 4: A Nightmarish Merry-go-Round

MGH released me in the early evening. Boston’s weather forecast included a July 4^th hurricane, so the city was holding its annual Esplanade fireworks on July 3^rd. Mark and I decided to take the subway home due to increased crazy traffic patterns thanks to the fireworks. Outside, I noticed a heaviness in my head. A sheen of sweat lined my face and torso. I didn’t quite trust that my body might not seize again, so I took small tentative steps, super aware of every sensation. There was a piece of gauze over the sutures on the right side of my head, and the curls on the left side only partially concealed the white bandage. Sitting on the train, I caught my reflection in the window. I’m sure I looked ghoulish to the other passengers. I tried to disregard the alarm I conjured up on their behalf. We were two stops beyond MGH when I felt the tingling neuropathy in my left hand. The two grand mals I’d had since the first surgery began this way. Oh no – not again! I wished I’d stayed at MGH.

“I’m afraid I might have another seizure. We need to get off at the next stop,” I urged. The stretch between Central and Harvard Squares is always slow due to a twist in the tracks, but that day it felt interminable. Approaching Harvard Station, I anticipated the train’s break, and tried not to freak out as the tingles in my hand traveled up my arm. “Maybe we should call 911,” I said as we exited the train.

“No, the traffic is miserable because of the fireworks. Let’s just take the train back to MGH. It’s only three stops,” Mark said.

Back to the hospital

Based on this past week’s experience, if this was another seizure, there was enough time to get to the hospital. I agreed to the subway plan. The inbound subway arrived quickly, and ran without delays, so we were back at the Charles/MGH stop in ten minutes. During that time, the tingles had traveled up my arm left arm and onto my face. Though I was completely coherent, I was terrified: My brain was delicate, and my body was succumbing to a seizure’s bedlam. Mark escorted me through MGH’s lobby to an administrator sitting behind a desk.

“My wife’s having a seizure. She needs help,” he urged. The woman looked at us like we were from Mars.

“What’s your name?” she asked me. I rattled it off; I was lucid, but the tingling sensations had spread to the other side of my face by now.

“I was discharged less than an hour ago,” I added.

“Address?”

“She was just discharged a little while ago!” Mark repeated. “Can’t you find her contact info in your computer?”

“Oh, here we are. “So, you’re still on Hooker Ave?” she asked. Were they friggin’ serious? Did they really think my address had changed in the last hour??

“That’s right. All of the information is the same.” Mark said. “She’s going to need a doctor any second. Can you please get somebody?” Even in my panicked state I could see he was agitated. The woman continued to double check answers on her electronic intake form. I saw her call over her shoulder to another staff person before I lost consciousness.

I woke up a few hours later in a hospital bed

With Mark beside me in a chair, I felt like I’d been walloped in the head – dizzy and still achy from the surgery – but at least I didn’t have a tube shoved down my throat. I could talk, though forming words took great effort.

“I guess they shouldn’t have sent me home today.” My seizures had gotten the better of my brain – again. I felt demeaned. I probably should have insisted they keep me inpatient, but I’d wanted to attend Dan and Jenny’s wedding. Even more, I wanted to be okay. Tomorrow was Independence Day – I wanted to be independent and free of these damn seizures already!

Mark told me that the kids were with friends, and Greta had offered to take them, if necessary. I resigned myself to likely missing the wedding the next day. Not only did I miss it, but I had another grand mal while in the hospital on July 4^th, while a friend was visiting. Although the episode was a bummer, I was grateful for the setting – I was in a hospital with experienced staff, surrounded by people I loved, and my kids were elsewhere.

Now the thought of leaving the hospital intimidated me. Who could say I wouldn’t have another grand mal? How could I possibly recover from the craniotomy if I kept having seizures? Was the brain surgery a failure? If I kept having grand mals, I’d say so. These seizures followed by the back-and-forth to MGH was a merry-go-round I needed to get off!

Grand mal week

Mark stayed with me at MGH on July 4^th, and Greta took the kids to Dan and Jenny’s wedding. She kept them at her house for the rest of my hospital stay. Dan and Jenny visited me at MGH and recited their wedding vows to each other. They sat side by side in chairs by my bedside, their faces turned toward each other, as I lay in bed sporting a hospital johnny.

The July 4^th seizure was the fourth one I’d had in seven days, so I dubbed this “grand mal week.” Prior to surgery, the last time I’d had four grand mal seizures, they’d been spread out over seven years. What was going on here?? I was scared these frequent big seizures were going to become a “new normal” for my brain. This time the hospital kept me four more days, much to my relief. Given the week I’d had, I felt far from being out of the woods, yet. The hospital felt like the safest place to be for the time being. In the meantime, they cranked up the anti-convulsants.

Part 5: About Hair

I’m going to briefly stray from the timeline to share my experience about hair loss and brain surgery. I hope these insights are helpful to somebody who is contemplating brain surgery, and worried about the impact on their hairdo. Full disclosure: my advice is impractical for anybody who is bald. Hair was a literal camouflage for my surgery, which a bald person could only obtain with an accessory like a wig or hat.

I avoided brain surgery for years primarily because I was terrified about getting my head sliced open. That said, I was not looking forward to having the right side of my head shaven, resulting in a punk look that seemed especially garish with an incision scar. Hair is one of our signature features, outlined in detail when describing what a person looks like, and I dreaded losing half of mine, if only temporarily. Looking back, I definitely over-worried those vanity concerns.

The neurosurgeon shaved the right side of my head for both brain surgeries. As pictured in the earlier posting, initially the incisions were obvious. Following both surgeries, a short thick crop of hair grew in within a couple of weeks. This photo was taken less than two weeks after the first surgery. I was able to pin a bunch of my left-sided curls over the shaven side, which had a short layer of hair. I pulled some hair from the back left over to the right. The do was messy, but passable.

Post surgery hair regrowth

The below pic was taken on July 4^th, when my mother came to visit me at the hospital, six days after the second surgery. By the end of July, a little more hair grew in, and I mastered that asymmetrical ponytail style. Brain surgery gave me a new appreciation for my thick curls: With just a hair tie and a few clips, I was able to camouflage my scars, and avoid donning the punkish look, which was not quite my style.

I perfected the asymmetrical ponytail and donned it for the three years it took the right side of my hair to fully grow in. Here’s a picture of me with my sister taking a Duck Boat tour on September 1, 2014. She, of course knew I was missing almost half my hair, but to a passerby, this could pass for an artsy unconventional do.

One thing to keep in mind

There’s no hiding the scars from your hairstylist. When the hair grows back in, it cannot grow where the incision was made. I have two different white arcs on my head, which are buried well beneath the rest of my locks, but they’re obvious to my hair cutter when I go for a cut. Thanks to my hair, other than my medical providers, she’s the only person privy to this.

I wanted to share these photos to assure anybody considering elective brain surgery but finding themselves hesitatant due to hair-loss-phobia. Don’t let that fear hold you back. If you have hair pre-surgery, within a month, you’ll likely be able to find a way to go out in public, surgery scars unseen –just creatively roll with the hair loss. That might mean strategic pinning and clipping, or switching to a shorter do, or another solution. Be flexible and imaginative.

Part 6: Emergency Room Tips

Eight years later, it’s easy to speculate I might have avoided “grand mal week” had the hospital kept me for longer after the emergency craniotomy. While it’s impossible to know for sure, it’s clear that the initial two days weren’t enough. Below are the steps I didn’t take, which I’d suggest to those who are inpatient in E.R., recovering from a significant procedure/operation:

If the E.R. wants to discharge you, and you feel nervous about it, tell the attending doctors. Explain your concerns and insist on staying.
Call your own practitioners and get them to speak with the attending doctors on your behalf.
Bigger hospitals have Patient Advocates on staff. Track that staff member down and see if they can assist you with creating a discharge plan that feels safe.

None of the above is easy to do in the middle of a medical crisis, which is why I didn’t. But I will use this is 20-20 hindsight going forward, if I am ever in a similar situation.

Part 7: My Bummer of a Summer

The hospital released me on July 8^th with instructions to take a massive drug cocktail comprised of three anti-convulsants, including a further increase in my Keppra, and I dutifully agreed. I knew the potion would make me perpetually dizzy, but I also knew that enduring this was a step toward getting off the nightmare carousel. I was advised to stay under adult supervision 24/7 for several weeks. Mark implemented a “Laura-watch” plan, ensuring another adult was always with me. Friends and family took shifts, keeping me company. Both my mother and father wound up staying with me a couple of afternoons. I hadn’t been this reliant on a parent for decades and it felt weird. We even hired a care attendant for a few hours. I slogged through the days, demeaned by dependence, and scared I would seize.

Three days after my release, I met with my neurosurgeon who reviewed my CT scan results with me: The hematoma was getting smaller. My brain was healing. Even so, I was frustrated.

“I just had four grand mal seizures in a week! That’s never happened before. Should I expect to have these on regular basis now?” What if every seizure I had going forward was this big? I couldn’t function independently, couldn’t safely take care of my kids. This was not supposed to be the outcome from surgery.

“No, hopefully not. These seizures originated from a different place in your brain and were triggered by the subdural hematoma. If we can stop them now, once your brain heals, there’s a good chance you won’t have them anymore.”

Uncertainty

“But I felt like I might have one several times,” I said, consulting my notes. “I felt tingling in my left hand many times since I left MGH. I assumed the neuropathy might lead to another grand mal. What do I do if I feel like a seizure might be starting?” The question gushed from my mouth, in an exasperated rush. The doctor prescribed a fast-acting valium solution.

“Consider the valium a last resort,” she said. “Only take it if you feel certain that you’re experiencing seizure symptoms. The neuropathy isn’t necessarily a seizure indicator – it might be your brain’s recovery process that’s triggering the tingling. Or even medication side effects.” I was depleted by the time we left.

I didn’t take the valium, but three days later I had an allergic reaction to my medication cocktail. A slight rash I’d noticed the day before had spread to my neck: What were initially small bumps on my chest had extended beyond my collarbone and transformed into large red splotches. I called my neurologist who instructed me to check myself into Brigham and Women’s Neurology unit, where they’d be expecting me. On the heels of my recent ER experience her directive unnerved me. I hoped the admission to Brigham would be easier. The care attendant we’d hired for “Laura-watch,” brought me to the hospital. The check in to the Neurology unit was painless. I sent her home – I had medical professionals monitoring me now.

I lay in the hospital bed, adjusting to the room. Even though I was still dizzy from drug cocktails, I could still calculate data on my life circumstances: This was my fourth hospital admission in 16 days, and the eleventh one of those days that I’d spend in a hospital.

Being inpatient

While those numbers reflected a crappy situation, I was relieved to be inpatient: I was mired in the depths of “seizure-watch,” freaked out by every tingling sensation I experienced. The hospital was the safest place to be, and we didn’t have to pay a stranger to watch over me. Most importantly, the doctors would find a way to get me off Dilantin, which I was allergic to.

I needed to stay seizure-free, but I couldn’t take Dilantin anymore: A catch-22 my neurologist had to solve. I needed a different third medication. Switching medications took four days, which went by in an over-medicated sleepy blur. They added Tegretol while tapering me off Dilantin. By day three, I had a new symptom – nystagmus, or uncontrollable eye blinking. Ugh! Another body part not under my command? Really? I was glad that my lids were rapidly flapping up and down when my neurologist was visiting my room. “See this blinking – that’s out of my control,” I explained. “Is that from the Dilantin?”

“It’s likely related. We’re taking you off the Dilantin, but it can take several days for the medication to clear out of your system. The eye blinking can also be a Tegretol side effect. Most likely the combination of all the drugs is too much. There’s a reasonable chance this will go away when you’re off the Dilantin.”

I tried to take heart in her prediction. One thing she got right: the combination of all the drugs was too much. I slept on and off, and my head ached from pressure, as though it was waterlogged all the time. But the mega-cocktail kept the seizures at bay, and until the hematoma was healed, this was the only option.

Recovery

I was desperate for some tangible proof of recovery, which was elusive in my hospital bed. A CT Scan result demonstrating the hematoma was healing was the only way I could get what I wanted. On my last day at Brigham, I used my cell to bang out an email to the neurosurgeon. I begged her to reschedule my upcoming CT scan to an earlier date. I was thrilled by her quick positive response, emailed back the same day. She moved up the CT scan so it was four days sooner, and gave me an appointment with her immediately following it. I finally had something potentially positive to look forward to! If the CT scan showed that the hematoma was still healing, they’d be able to decrease my meds a tiny bit. More importantly, that would be further proof that my brain was on the mends.