Living With Epilepsy Part Two: Into The Great Wide Open
By Shelby Thompson
If you read my previous post, then you know I have been living with epilepsy since 2004 when I was first diagnosed and treated for an Arteriovenous Malformation (AVM). In 2004, and then again in 2007, I received Gamma Knife radiation treatment to obliterate the AVM. It was successful — mostly. In 2009 I began treating my epilepsy with a combination of daily medication and a medical device called a Vagus Nerve Stimulator (VNS). I had the battery replaced in 2013, and then in September 2016, I went to see a new neurosurgeon, Dr. Saadi Ghatan, to discuss replacing my device. Instead, I was presented with a new possible approach to treating my epilepsy that could be truly life-changing.
Dr. Ghatan determined that the radiation treatment and the accompanying operations that left the scar tissue (or a lesion) near the area of the former AVM, just above my left ear, was keeping my seizures active. The lesion measured about 1.8 x .8 cm (about the size of the first joint of my pointer finger). Using this information, Dr. Ghatan and my neurologist, Dr. Madeline Fields, believed that my seizures were caused by focal epilepsy, which was why I had not responded well to medication or the VNS as a long-term solution. Focal epilepsy is easier to treat because, as the name implies, usually only a small part of the brain is causing the seizures rather than many points of the brain working in tandem. Upon that first appointment, he suggested that we forgo the battery replacement all together and try something that could possibly make me seizure-free for the rest of my life! Baby, even the losers get lucky sometimes.
Since my VNS battery was dying, we got straight to work. From October 2016 through January 2017, I underwent a series of neurological tests to determine if I was eligible for surgery. If the results of the required tests concluded that it would be safe to operate, we would remove the lesion with either laser ablation or via craniotomy. If possible, Dr. Ghatan deemed this approach as a “cure” for my epilepsy. I didn’t even know that was a choice.
The Waiting: Lab Rat
On October 28, 2016, I checked into Mount Sinai to spend the weekend under a watched EEG to confirm the seizure activity. An EEG tracks the brain activity with small, flat metal discs (electrodes) attached to your scalp. After attaching the EEG, we reduced my medication over time to “force” a seizure. I stayed in the Neuro-ICU through Halloween day, wearing a charming head wrap and carry-around purse of electrodes.
After several days of no activity, I finally had a seizure at 5am Monday morning. Afterward I sat through almost three full hours of neuro-psych tests including everything you can imagine from memory tests, repetition tests, drawing, image recovery, to even playing with blocks. It was long and trying, but had to be done post-seizure to confirm the results. My neurologist was able to get the data she expected to see — that the seizures were coming from the area in the left temporal lobe and no where else in the brain.
Two weeks later, I checked back into Mount Sinai for the next steps — an angiogram and a memory test, both of which I stayed completely awake for. Because the lesion was right next to the left hippocampus (the part of the brain in charge of short-term memory), they wanted to confirm which side of my brain is in charge of this function, and that the AVM was inactive. If the results showed I am left side dominate, they must utilize brain-mapping before going into surgery so as not to damage anything (umm, yes please).
Straight Into Darkness: The Angiogram
First thing in the morning, they hooked me up to the EEG again to track my brain activity during each of the procedures. The room was quite space-like with large, white, moveable machinery everywhere, with X-rays of varying sizes, and a big screen TV to plaster the images onto (“Or the Super Bowl”, one doctor joked). To prep the room, they covered everything in plastic, including me! They also tucked me into an air-filled, silver warming suit made of the same material of the blanket you get after you run a race to warm your body up. They nicknamed it the Bear Hug and it was meant to protect me from the X-ray radiation by multiple layers of lead, but also warm me up in the cold, sterile room.
An angiogram is basically a fancy internal X-ray they take by injecting dye into your blood vessels through a catheter inserted into the Femoral artery. They prep you for this with a shave, to which I said, “Well, this is not the spa I signed up for!” Keep your humor up, people. I could see everything on the TV, starting with the insertion of the catheter and it snaking up to the vessels closer to my brain to take images with and without contrast (dye).
The dye is safe, but it felt really, really weird going up my body. Each time the dye went through, a warm, numbing sensation hit that side of my face starting in my chin, passing through my cheek, up through my eyeballs, and into my brain. I had to hold my breath and could not move a muscle. Whether or not my eyes were open, I could see the dye in my eye like tiny sparks of lightning. It reminded me of the blinding light that crept through my eyes when I broke my arm back in 2014.
The sensation passed quickly as the dye moved through the blood, and they took as many images as possibly from a variety of angles, shouting things to the nurses like, “Turn 6 x 10!”. As the giant white box above or beside me would move, the lights would dim, and another image would appear on the screen until complete. Good news from the Angiogram: the AVM — the originator of all this madness — is completely gone aside from the lesion.
Between Two Worlds: The Wada Test
Not to be confused with the World Anti-Doping Agency, the Wada test is named after Canadian neurologist Juhn Atsushi Wada. Neurologists use the Wada test which introduces a chemical called sodium amobarbital to put half of the brain to sleep for four minutes at a time so that they can see which hippocampus on which side of the brain is in charge of memory.
Around 80% of patients do not remember the test at all. I’m one of the 20% who remembered everything. The chemical compound was introduced by the aforementioned Femoral catheter. About six doctors crowded around me — my neurologist, my neuropsychologist, some fellows, the anesthesiologist, and several nurses. They made me hold my arms up in the air, and when they injected the chemical into the side of the brain they were putting to “sleep”, my arm dropped to confirm it was working.
They then quickly showed me images of green and red colored squares and circles, and I asked me if I knew what they were, and if I could point to specific sizes/colors.
Next were a series of objects like kids toys — a rubber ducky, a policeman doll, a key, a brush, etc. Lastly, they showed me really crappy black & white sketches of more easily identifiable objects like a cow, a robot, a flower, a cat, a piece of pizza, etc. They then flushed the chemical out, left the room, and came back about 10 minutes later and asked me:
Dr: Do you remember if we started this test?
Me: Yes.
Dr: How do you know?
Me: Because you stood right there and showed me a picture of a cow.
Dr: That’s right! Good!
They then repeated the test but this time they asked me to recall what I saw, and mixed in additional objects see if I could remember if I had seen them before or not. A lot I had not seen before. During both sides of the test, I experienced normal side effects including losing vision on the periphery on the one side of my right eye. Despite burning up temperature-wise, I was also shaking like I had fallen in Glacier Lake, I was sweating like crazy under the Bear Hug. On the right side of my brain, I could barely think, let alone talk, but I could remember everything about what happened, it was like I just couldn’t make my mouth say words. It felt very much like how I feel when I’m pre-seizure. On left side, I could speak clearly, point to the shapes and colors easily, but I could not remember any words of the objects they showed me. I could, however, easily remember what they showed me when they asked again.
At one point, they brought out a little doll of a black man dressed in a doctor’s lab coat, and said to me, “Do you remember this?”
To which I replied, “Ben Carson? Get him out of here!”
At least we know my sense of humor is not one side dominate! I got a pretty good laugh, from what I remember. After it was all done, they gave me some Valium and sent me home and slept for about 12 hours. I had a bit of dye-brain the day after, though I felt pretty good — no headaches, just residual weirdness.
Runnin’ Down a Dream: or The Last Waltz
Content with the results so far, in December of 2016, the neuro team decided they would like to move forward with the last test and see if I could withstand surgery. The last and final piece, a Sterotactic-EEG (SEEG), was long and infuriating. Early on Friday morning, January 6, 2017, Dr. Ghatan and his team inserted six probes in specific points on the left side of my brain with anywhere from 6–10 sensors on each (depending on depth) to conduct the SEEG. Just like the previous EEG, I weened off my medication and waited to have a seizure. Because the probes were attached to a brain monitor, I was uncomfortably forced to be stationary this time and could do little more than stand up and carefully manipulate the wires to stretch my legs. I was restless and depressed, but also fascinated by what we might discover.
Eventually, I had had three seizures total — one major grand mal — and we proved that my seizures were definitely coming from the focal point of the lesion as well as several surrounding spots. This is called kindling. Just like when you light a fire and it spreads, kindling happens over time when the brain is subject to frequent seizures and the nearby areas pick up the signal and keep it going. Despite this finding, the path to surgery was still not clear and I was getting emotional.
On day six of my hospital stay, we conducted the final part: brain mapping with the SEEG probes to confirm the source. Is the focal point just the lesion? Or is it the lesion plus the area identified as the kindling? Or a combination of the lesion plus the hippocampus, and amygdala (the ones in charge of memory, emotion, and language) too? If its just the lesion — brain surgery it is. If the others were included, it may have been too dangerous for me to undergo.
The brain mapping lasted about an hour while my neuropsychologist slowly turned on a very low dose of electricity to each of the sensors on the probes to determine if the kindling was strong enough to be it’s own focal point, or if the other parts of the brain were contributing. Part of the test is also to confirm if the part of the brain required to move through to get to the lesion would be safe without causing a seizure mid-surgery, or worse, damage to my memory, language, or emotions. There was a nurse on standby with a needle full of Ativan (BTW, this drug makes me black out and sound like a crazy person — fun!) just in case I started to seize during their work. I just sat back and watched my brain waves break into the reef as every probe electrified me.
At the end of the mapping session, they decided it was safe to move forward with removing just the lesion, not the surrounding areas or major parts of the brain. Dr. Ghatan settled on a lesionectomy instead of a craniotomy for the surgery. This meant the chances of causing further damage or creating severe post-op recovery is 50–60% less than traditional surgery. The path of least resistance was set: all parts marked important redacted to ensure I didn’t wake up in a fugue state. Brain mapping is pretty intense, but what an amazing technological improvement considering back in the day, surgeons just went in and removed everything they believed to be causing epilepsy and depended on the brain’s other side to compensate!
When The Time Comes: Brain Surgery
In the wee hours of Friday, January 13th, my neurologists and a team of what seemed like 50 people came in, detached me from the monitor (YES!) and rolled me into surgery. I said goodbye to my mom and dad, reminded them I made a Last Will & Testament (just in case — how adult!), and breathed deep: here we go.
Surgery lasted for about four hours. While under anesthesia, the team removed my VNS and the accompanying leads, so when I came out, I was covered in bandages, and I had, as you’d expect, a pretty horrendous headache. But I could see, think, and speak clearly, aside from the anesthesia and dull ache in my wounds. Since a lesionectomy is a far more localized surgery minimized by the brain mapping, they only shaved a small portion of my hair above my left ear. The stitches were hidden under the rest of my hair, along with the others I received in each of the SEEG spots.
I spent two more nights in the Neuro-ICU before being released. One night with another patient in recovery who snored and had multiple visitors from New Jersey. I was heavily sedated because of the pain, so I didn’t eat much or do much other than sleep and try to get up and move around since I had done so little of that before. When my neurologist came in to check on me on my last day around 6am, she said, “How are you doing?” To which I replied, “I’d be fine if I could get out of here.” She smiled and said, “I’ll work on that”.
That afternoon, January 15, 2017, I was free.
The Wild One, Forever: A Dummies Guide to Healing
I spent the next three weeks in recovery. It’s surprising how tiresome doing nothing for 10 days can make you! I had lost weight, strength, energy, and motivation. I was in pretty consistent pain from having part of my skull removed, and my brain felt like it had been soaked in whiskey. I was weak and swollen. It took me three days to take a shower, and another two to leave the house at all. My mom stayed with me for that first week home cooking, cleaning, and making sure I didn’t have a seizure. After feeling confident that I might be ok after all, she went home and I carried on trying to gain back my strength and reduce the pain.
On the first day of February, I came into work for a half day. By the time I got home, I was exhausted! I slowly built up more energy and worked part time before going in on a regular schedule some weeks later. It took some time to engrain myself back into the work flow, and I was often frustrated by feeling left out. It was hard. One month almost to the day after surgery, I took my first trip to San Diego to see my friends get married.
It was exciting to finally feel like I was getting back to a normal life after what felt like a lifetime of struggling with WILL I HAVE A SEIZURE TODAY? I’m happy to be where I am and feel lucky to have very little after-effects from surgery. Small things like remembering details, or stories from my past, and things that came naturally to me before had to be relearned a little. For instance, I used to be a great speller (Hooked on Phonics worked for me!), and now I have to try to make sure I spelled something right, and I find myself confirming spelling with apps and Google.I also experienced some emotional set backs I was not prepared for. I worry that I am being too harsh in response to other’s feelings, but some of that is my own personality, so I don’t know if much has changed. What did change, is that after years of living identified as a person with epilepsy, I was on the road to freedom. But what did that mean?
About six months after surgery, the search for my new identity had me lost and I feel into a deep depression and anxiety about what to do next. I had no idea this was a side effect, but it is. Dr. Fields assured me that people who recover from a medical identity often find themselves at first in a euphoric phase, and then later in this state of mind. It took making changes and motivating myself to continue to move forward to come out of the dark side. That’s not to say I’m never sad, or slip into patterns best left undisturbed, but knowing that it was all part of recovering to feel this way helped me get a hold of my life and embrace my freedom.
Sometimes I wonder what my life would be like if I had said yes to brain surgery back in 2004. Medicine and technology has changed so much since then, it doesn’t seem possible that I ever even considered it. But without the scar tissue remaining, would I have ever landed here having survived brain surgery, one year ago nearly to the day, and sharing my story? It’s no use going down the ‘Coulda, Woulda, Shoulda’ path, or lurking in the past too long about decisions that have already been made. 2017 was a tough, but amazing year, and here we are in 2018, and I haven’t had a seizure yet! For me that is remarkable. Truly. I am working on maintaining my new identity with patience and positivity in my healing. The next step will be to reduce my medications and see if we can maintain this cure. I might even drive again some day! That’s a goal for another time, so for now, let me get back to dancing in my room. I’m still a wild one after all, and I suspect I will be forever.
If you missed Living with Epilepsy Part One: What Are You Doin’ In My Life? you can find that here. If you are living with epilepsy or facing surgery or anything like it, and want to talk, please reach out. Thanks for reading. Special thanks to Tom Petty #RIP. I made a playlist of the songs listed here.
Shelby Thompson is a writer, a poet, and a storyteller. She hosts the Big Irv’s Presents: Ladies Night Storytelling Show in Williamsburg, and participates in various other storytelling events when available. She has been published in The Exposed, BUST, METAL Magazine, among others, and her poetry has appeared in small print collections and art galleries in Brooklyn.
Follow her @shelbsthomcat on Instagram & Twitter.
