Tag Archives: Vestibular Schwannoma

Collateral Damage

My left knee directly after surgery accompanied by ice packs.
My left knee directly after surgery accompanied by ice packs.

In January 2014, I fell crossing the street. In my defense, it was a damp day that felt like it could either rain or snow, and the streets were already slick with moisture. I was hurrying to cross while I still had the light, and, right as I was in the middle of the road, my right foot shot out from under me. I had slipped on the white paint of the crosswalk, essentially doing an unintended split. My left leg was behind me, and I landed on it, putting all of my weight on my left knee and winding up in a sitting position. The fall hurt, in the way that most falls do. I was scraped and bruised (but mostly embarrassed). But I got myself up, and continued on my way to work, thinking little of it in the days and weeks afterwards.

This fall was one of the signs I missed. Looking backward, it has become clear why I fell. To be fair, at the time, I didn’t know that I was walking around with a benign brain tumor altering my system of balance. The bruises on my knee were low priority compared to diagnosing and addressing my other symptoms, hearing loss and vertigo. Everything in my life became centered on the symptoms of the tumor – symptoms that wouldn’t be diagnosed until two months later.

As badly as the tumor damaged my ability to balance, the surgery to remove it made it worse, albeit temporarily.  I needed physical therapy (vestibular rehab) to retrain my brain to balance, which helped me get back on my feet. While I was working on my balance, I noticed a nagging pain in my left knee. I shrugged it off as mere stiffness from having been inactive for so long while recovering. But it didn’t go away and hurt more as I became more active.  In the following months, I would start to think that this knee injury was like my brain tumor’s last “screw you”– the final parting shot.

Fed up with being sick, I got good at ignoring the discomfort.  I wanted so badly to feel like myself again and get back to my normal. The last thing I wanted was something else wrong with me that needed medical attention. So, even though I knew the pain in my knee wasn’t normal, I gritted my teeth and just dealt. It was nearly a year later before I realized  my knee pain had gotten much worse. While I can be ostrich-like with my head in the sand when it comes to my health, the knee pain of spring 2015 was something I could no longer ignore.

I started with my primary care provider, who recommended an orthopedic specialist. I had pain in several different parts of my left knee: in the front near the patella (knee cap), along the inside of the joint, and towards the back. This variety of pain sources made it a little more difficult to pinpoint the problem, but I agreed to start with some physical therapy to see if that could help. The PT did help some of the pain, especially along the inside of the knee, which was diagnosed as pes anserine bursitis. Basically, the fluid-filled pad cushioning the bones of my knee was inflamed and tender.  Even after the PT, there was still lingering pain in the knee, and it just didn’t feel right, so I asked the orthopedist for an MRI.

Knee all wrapped up in bandages a few days after the surgery.
Knee all wrapped up in bandages a few days after the surgery.

The MRI showed a lateral tear in my meniscus. The meniscus is the rubbery cartilage disc that cushions the tibia (shin) from rubbing against the femur (thigh). Typically, meniscus tears are caused by forceful twisting of the knee– exactly what I did when crossing that street. Next to my tear was a bonus cyst, which was adding to the pain. The orthopedist and I concluded that, if physical therapy hadn’t helped enough, the only remaining option was surgery.

After what I’d been through with the brain tumor, I was hesitant to have another surgery. It was hard to be so dependent on other people after a procedure, and waking up from anesthesia was a horrible experience. Rationally, I knew the knee surgery wouldn’t be the same as the brain tumor surgery, but I still couldn’t get motivated to actually schedule it. Pain won out though, and I had to accept that I needed the surgery if things were going to get better. At 27, it didn’t make a lot of sense to resign myself to living with constant pain. I struggled going up and down stairs, couldn’t walk far distances, and running was completely out of the question.

I decided that the beginning of March made the most sense for when to have the surgery. It’s when Boston usually starts to thaw, so I would not likely have to contend with much snow. I also timed it between travel and social requirements, so I would have time to recover. My parents were able to take time off of work to come up to Boston to stay with me, which was particularly helpful; I’m pretty sure I would have started clawing at the walls if left alone during recovery. Of course the timing wasn’t great for work – but it’s never completely convenient to take two weeks off from your daily activities. There was a lot of emotion built into getting my knee fixed because of what I’d been through when I injured it, but I knew it was the right choice (and it was really the only option for feeling better).

The surgery itself was on March 1st, and went as smoothly as possible. I could have had it at a hospital in Boston, but it made more sense to go outside the city: it left the hospital for emergency cases, which is what they’re designed for, and moved my outpatient procedure to a facility that it was designed for. I suspected that the outpatient facility would be calmer and make for a more focused experience, which it was. I also didn’t want to be in the very same PACU that I’d had my brain tumor surgery experience in; I felt like that place would bring up memories and emotions that I didn’t want to relive.

Knee without the bandages, about a week after the surgery.
Knee without the bandages, about a week after the surgery. You can see my surgeon’s initials where he signed my knee before the procedure.

It was all over in a couple of hours. I didn’t have nearly as much trouble waking up in the PACU this time, although I did get some momentary vertigo as I was coming to, which was scary given that I was still pretty out of it. Mercifully, it passed quickly and things went back to normal. Within a couple hours, I was dressed and able to get in the car to go home. Once home, it was couch and Netflix. I was only on the crutches they gave me for two days, and, after that, I started walking around on my own.

I’m going to need physical therapy, but I can already tell that the pain from the torn meniscus is gone. Not that there’s no pain–recovery can be tough and there is still a little of the bursitis that I had before–but I can tell the nagging, limiting pain is gone. After compensating for one weak knee with the other strong leg, I now have to regain strength and steadiness and equivalence between both.  Having spent most of my life with no health issues, and now having undergone two surgeries in two years, I definitely have a different perspective on what not feeling well means. I am optimistic that, finally, I’ll be able to feel better.  I will get back the way I was before the brain tumor and balance problems, before the knee pain. It’s an opportunity that I know many people who endure similar illnesses and injuries don’t get – the chance to go back to full health.

The View from the Stage: My Story Collider Experience

On stage at the Story Collider. Photo by Brian J. Abraham.
On stage at the Story Collider. Photo by Brian J. Abraham.

I have very limited experience being on stage. I’ve never been an “all eyes on me” type of person. I rarely, if ever, give talks or speeches for work, and, when it came to theater productions growing up, I was happier in the lighting booth and running around backstage. My on-stage experience amounts to one disastrous talent show where I was supposed to do a ballet routine, spun around once, burst into tears and stood on stage crying for the remaining three minutes of the song. Afterwards kind adults kept coming up to me telling me I was great, and, even at the age of six, I was the person that replied, “no I didn’t, weren’t you watching?!” My only other performance remains my third grade school play, which was called “Project Rescue: Save the Earth” and was about recycling. I played a raccoon. I had no lines.

Given this tremendous wealth of stage experience, I recently figured it would be a great idea to get up on stage in front of a theater full of strangers and tell them all about one of the most traumatic events in my life. Why not?

In the Fall of 2015, I volunteered to tell the story of how I diagnosed my own benign brain tumor at the Story Collider. I’ve been a huge fan of the Story Collider since I met the show’s co-founder Ben Lillie in 2013 and was introduced to the concept. The Story Collider is a live show where people get on stage and tell the audience a true story about science. With this as the founding concept,  the stories cover nearly everything. Each show consists of five storytellers who take the stage for about 10 minutes each. Sometimes the stories are funny, sometimes heartrendingly tragic, but they’re always in some way about how science impacted the teller’s life. The Story Collider also has a weekly podcast, where they publish one of the stories from the live shows.

As the dust was settling from the entire brain tumor episode (around the fall of 2014), I started thinking that eventually the saga would make a great Story Collider tale. I wasn’t particularly ready then to get on stage and open myself up in that way, but I knew that it was something that I wanted to do in the near future. I think there is a lot of power in taking control of your own story and telling it your own way. I also feel like my story can help people by sharing what I went through and maybe even helping someone avoid the same mistakes I made– that’s why I wrote about it after it happened and why I wanted to tell the story publicly.

It took until the summer of 2015 before I felt ready to take the stage, I had been feeling kind of stagnant in the science communication side of my life and thought that getting involved in Story Collider could be a good way to shake myself out of it. Ben connected me with the Boston show’s producers Ari Daniel and Christine Gentry, and together we decided that the story would be a good fit for the December show (there was a Fall show for the NASW conference that I was not brave enough to do.  Strangers are one thing; professional peers are another – hats off to the daring souls who took the stage during that show!)

As I started working out what I wanted to say, I realized that I would have to focus on just a subset of the brain tumor ordeal. There are a lot of different angles I could take, but I decided that the part I wanted to concentrate on was what came before– the two years from when I started to feel sick to when I was diagnosed. I chose this time period for a few reasons: while I was seeing doctors and talking to others about my health, I was really in it alone, so a lot of the story is about what I was thinking and feeling. I wanted to talk about the doctor who got it wrong and the one who got it right.  I wanted to talk about my regrets in those two years. Perhaps the most interesting thing about the entire episode is when I diagnosed myself correctly long before any medical providers did.

Brain tumors are rare, but my tumor was a vestibular schwannoma, which is really rare: 2,000 – 3,000 yearly U.S. cases. Among primary brain tumors (those that arise from the tissues in the brain) the majority are non-malignant (like mine) but with more than 100 distinct types of brain and central nervous system tumors it’s a very tiny pie, being carved up into 100 even smaller little sections. Hitting the bulls eye, and getting the diagnosis EXACTLY right, as a joke, my first time out of the gate is incredible. It’s not that I’m particularly smart or anything, I’m just an informed person who got lucky – but still – hell of a thing, right?

After the show with my amazing co-storytellers. Photo by Brian J. Abraham.
After the show with my amazing co-storytellers. Photo by Brian J. Abraham.

The topic that I was most nervous about covering was my doctors. I know there is a ton of snark out there about how doctors are well trained, and making a diagnosis isn’t as easy as just going to google, and too often patients come to their doctors with whacked out ideas about what they might have. I get that, and I respect medicine as a field, and I know that doctors go through a tremendous amount to get trained, certified, and practice. But doctors are still just people. Highly trained people, with incredibly specialized knowledge, but still, just people. People can make mistakes. People can be dismissive. People can be cruel, and cold. Doctors aren’t above any of this– no one is. But doctors hold their patients lives in their hands, and, when you’re counting on someone to have the expertise necessary to help you, and you trust that they do, being dismissed, when you’re right, is a terrible thing to experience.

I wanted to tell how the medical system failed me at points, but I didn’t want it to be mere doctor-bashing. Yes, I saw a doctor who missed what others with medical backgrounds have told me were textbook signs. But I also had an amazing doctor who understood the significance of my symptoms right away and advocated for me as her patient to get the best care. I also had an amazing surgical team that went above and beyond to take care of me. (I still feel that I owe my surgeon her vacation days back; yes, the hospital’s only specialist in my type of tumor left her vacation to come back and treat me.)  As with all things, there was good and bad. I wanted to make sure both the doctor who dismissed me, and the doctor who pushed me to get diagnosed properly appeared in my story. The choices made by these  two people and how they treated me as their patient drastically and permanently changed my life.

I’ll never know whether the surgeons could have used a different surgical approach that would have saved my hearing if only I had been diagnosed by that first doctor. By the time I knew what I was dealing with, the tumor was so large that, for my safety, a hearing-sparing option was out of the question. If only we had seen it sooner, would it have been small enough? I think it probably wouldn’t have, and I’d have lost my hearing either way, but I’ll never fully know. If my primary care doctor hadn’t been so adamant about getting me diagnosed immediately after she saw me, would I have become unable to move my face? That was a real possibility, and was the reason the surgeons opted to do the procedure right away. If these two doctors had made different decisions, how would my life be different now? I think about that a lot.

That’s the story about science that I wanted to tell at the Story Collider. It’s the story of how I struggled with myself to find the truth that I didn’t want to be real among all of these conflicting forces giving me different information. Dissecting what happened to me in this way is something that I had avoided doing for a long time, but writing my script felt like such a rewarding exercise. It was good to turn all of these things over in my mind, and I think forcing myself to tease out my feelings about the whole thing helped me to come to a more secure sense of resolution about what happened. Sharing the story with a live audience was just the icing on top.

The show was in December 2015, and I shared the stage with four other storytellers: Kaća Bradonjić, Kamau Hashim, Meg Rosenburg, and Abhishek Shah. It was an absolute pleasure to share this experience with them; their stories were all amazing. The theme of the show was “The Art of Losing,” which I thought fit all five stories together perfectly. It was a total rush to take the stage. I feel like my emotions and adrenaline were running so high I don’t really remember the experience. It was like time warping. I just stepped up to the microphone and started talking, and then it was over and people were clapping.

Here is the audio recording of my performance at the show:

Overall it was a great experience for me, and I hope that people enjoy listening to my story. If you aren’t familiar with the Story Collider, I encourage you to check it out. It remains one of my absolute favorite means of science communication. They have live shows in an expanding number of cities, and there is always the weekly podcast – so plenty of opportunities to hear true stories about science.

Part One: Diagnosis

 What follows in this three part series is a personal narrative. All of the decisions I’ve made about my health were chosen in close consultation with medical professionals. My choices are mine, and not necessarily right for anyone else even with the same diagnosis. If you have concerns about your health I encourage you to seek out a medical professional, which I’m not. 

“When you hear hoof beats, think of horses – not zebras,” is a widely known version of a quote attributed to Theodore Woodward, MD, late professor at the University of Maryland School of Medicine. He said this as a means of instructing medical interns to look for the most obvious, and likely, diagnoses first. The most obvious answer to a problem is usually the one that is correct, but not always.

I’ve been thinking about this quote a lot over the last year or so, like a mantra. Think horses. It’s just a headache, you sit at your desk too much. Think horses. It’s only a little dizziness, vertigo? You don’t get enough sleep. Think horses. Your right ear is ringing, an infection? Think horses. Think horses. Think horses.

Working as close to cancer research as I do can make you a little paranoid. I try hard to stay grounded, and remember that headaches are headaches for the same reason that hoof beats normally signal horses – it is simply unlikely for a headache and a little dizziness to be a harbinger of anything more.

My symptoms were easy to downplay, but when I started to pay attention to what my body was trying to tell me, it was much more than a headache and a little dizziness. It was a piercing headache radiating from the back of my skull and wrapping around the front of my head to above my right eye. It was the additional emergence of my normal migraines with a ferocious new frequency. It was vertigo that left me feeling unmoored multiple times a day, everyday. It was diminished hearing in my right ear that left me missing whole conversations, and constantly repositioning myself so people could speak on my left. It was ringing, incessant ringing, in my right ear. Eventually, it was fatigue. I typically walk 45 minutes each way to work, and I hit the point where I dreaded having to get myself to the office.

Of course, all this did not hit at once. It built up over the course of several months while I berated myself for worrying and reminded myself to think horses. I often joked with a colleague about the rare diseases I must have, things it’s absurd to think an otherwise completely healthy, 26-year-old would have. I kept expecting things to get better, like if I made it through the winter I’d magically start feeling like myself again (because that is clearly how the world works). I didn’t.

I’m really not making it up

The real drama started in February when my hearing loss had become a serious concern. I went for a hearing test that I passed, registering in the normal range. When the doctor who gave me the results told me I was fine, I stared at her in disbelief. I tried to explain that I couldn’t hear conversations that I couldn’t make out music and lyrics when my headphones were in my right ear. I tried to explain that identifying words was different from identifying tones like in the test, but the doctor just looked at me and said, “I trust my data.” As if I’m just making it all up.

Since I passed the hearing test, I wasn’t sure what to do next. So, I spent a few more weeks with the symptoms getting worse to the point that I was having migraines everyday, and actually didn’t go to the office because I was exhausted. Then, it was my tongue. I find it almost funny that my tongue was the conclusive sign something was wrong, but it was. It was numb, and I tasted metal. The migraines had sent me to my primary care doctor in mid-March, and at this appointment after I detailed all my symptoms, she asked me, “Are you feeling anything else?”

Completely as an afterthought I added, “My tongue feels weird.”

“Weird, how?”

“Numb? I guess? I’m acutely aware that I have a tongue. Does that make sense? I feel it, but only half of it. And everything tastes funny, but only funny on the right side.” (Obviously, at my most eloquent.)

To my doctor’s credit, she didn’t let her concerns show, and since she was calm I was calm. She told me later when I mentioned my tongue she knew something was seriously wrong. She recommended I go for a CT scan of my head the next day. I took that day off work, and went for the CT in the early afternoon. It was quick and painless; I left the hospital around 3pm and took a cab home.

I intended to go to work the next day since they weren’t going to find anything and all this was just to rule things out because, well, horses. I didn’t entertain the idea that my joking about rare diseases may have had merit. I called my older brother, and told him explicitly, the idea that the doctors would find something on the CT was silly, and I was going to be fine. Later that night my phone rang it was my doctor calling at 8:30pm with the CT results. It probably goes without saying that your doctor doesn’t call you personally at 8:30pm with good news.

There are four ventricles in the brain. These ventricles are hollow cavities filled with your cerebral spinal fluid (CSF) the fluid that surrounds your brain. My fourth ventricle, the one at the back of the head, was compressed, putting pressure on the flow of CSF – but the CT didn’t show what was causing the compression. My doctor told me to go to the ER immediately, because I needed an MRI. Even then, I was completely rooted in denial. My health has been my privilege, I have never had any other medical problems, and I have a clear family history. It felt silly and paranoid to think it was anything bad.

In the hospital

Yes, I took a selfie in the Emergency Department while waiting for an MRI.
Yes, I took a selfie in the Emergency Department while waiting for an MRI.

Since I needed to get myself to the ER, I called a friend. I don’t have any family in Boston, but my friends are incredibly supportive.  When I called and said I needed a ride to the ER, the response was, “I just have to put on pants.” Another friend met us there, and we were taken back quickly. After a brief bit of confusion about why we were there (my appendix is just fine where it is, thank you) I was told I needed a consult from neurology.

In the ER that night I saw two nurses, and three doctors (or four, around 1am I got kind of fuzzy, and I don’t remember any of their names). I did a lot of touching my finger to my nose and following the light with my eyes. I cracked jokes with my friends. We discussed the upcoming nuptials of another friend and the hotly debated issue of the wedding date. I wished I had sweatpants because those gowns leave a LOT to be desired. I wondered when I would get the MRI so I could get out of there and go home.

Around 2am, I was told I was being admitted. I felt silly about it, like, I’m fine, horses and stuff, we’re just ruling things out this is not necessary. I just wanted to go to sleep. I kept getting asked if I had questions. I should have questions, shouldn’t I? I was too tired for questions. So, I just let them push me through the hospital to the neuro floor (riding a bed with wheels is a weird thing, for the record). I was incredibly concerned about the fact that I didn’t have my mouth guard to keep me from clenching my jaws, and didn’t want to sleep without it. I was assigned a room, and a nurse, and a tech. Vitals were taken for what felt like the 10th time. My friends were allowed to leave, and come back to bring me my mouth guard and a pair of sweatpants. By the time they headed home for the night, it was 3am.

My nurse woke me at 6am to get me ready for the MRI. I’m not afraid of tight spaces, and I was sleepy, so I just let them do their thing. I was back in my room by 7:30am, ordering a bagel and coffee for breakfast. My friends returned and we spent the morning hanging out as if we were anywhere but the hospital. I was texting my parents, but didn’t want them to worry since it was all a lot of fuss for nothing, so I downplayed the situation.

My primary doctor, who had ordered the CT and told me to go to the ER, came to see me that morning. It was reassuring to see a familiar face. She said they were waiting for the MRI results, and we’d know that day. Around mid-morning a group of doctors came in and asked me to go through the whole story and describe the events that had led up to me landing on their neuro ward. They said they would be back with the MRI results. My friends and I watched some mindless daytime talk shows. Then we watched the Jetsons, because daytime TV is the worst.

It was early afternoon when the doctors came back. There were five of them, ranging from medical student to the neuro attending. There was more medical history, and touching my finger to my nose. They pricked my tongue with a pin. After this, they told me the MRI results. Sitting in that hospital bed on March 19 with my friend and five doctors staring at me, I heard the words, “we found a mass.” The doctors told me that I did have a tumor, but it wasn’t a type of tumor they often see – the MRI hadn’t shown a horse, in fact, I had a zebra.

My zebra

A copy of my MRI taken with my cell phone showing a very obvious tumor.
A copy of my MRI taken with my cell phone showing a very obvious tumor.

One of the medical students (a nice guy, though perhaps a tad too gleeful about this) told me I have a type of tumor most medical students only get to see in textbooks. My tumor, in the inner ear, is called a vestibular schwannoma or an acoustic neuroma (the two are interchangeable). Your cerebral nerves pass through your brain and go out into your body to control all of your various functions. My tumor was growing on the eighth cerebral nerve (compromising my hearing) and putting pressure on the seventh (the numbness in my tongue because the seventh controls your face). It was between the cerebellum and the pons areas of my brain, and pressing on my brain stem.

Your inner ear is where your vestibular system, which controls your sense of balance, is located. Vertigo, the dizziness and spinning sensations I’d been feeling, is a common symptom of vestibular dysfunction. The location of the tumor meant that in addition to ruining my hearing on the right, my vestibular system was also seriously damaged.

According to the Acoustic Neuroma Association, these tumors affect one out of every 50,000 people and are typically diagnosed between ages 30-60. Any tumor is scary, let alone a tumor near your brain that is threatening your ability to move your face, but it also has a fantastic prognosis. I was told it is typically a slow growing tumor, so I’ve probably had it for years. These tumors are highly likely to be benign, meaning it won’t spread and become lethal. I write about neuro-oncology enough to know that operable is one of the sweetest words in the English language. I’ve had to talk to and tell the stories of family members who lost their loved ones to brain tumors that couldn’t be removed. I have never been so relieved by anything in my life as my zebra, because if it had been a more common type of brain tumor, I would face a very different outcome.

Instead, there are treatment options, all of which end with a full recovery albeit with scars. For someone like me who has had headaches and vertigo symptoms for years, I may leave all this better than I’ve ever been – this tumor needed years to grow to reach 2.4cm, and I’ve been unknowingly living with these symptoms the whole time. I decided that, for me, surgery was the best option. I felt that it would give me the best chance of never having a recurrence, and would preserve my ability to move and control my face. When I went to meet with my surgeons, they retested my hearing. The results showed that my ability to hear out of my right ear was at 56% meaning that functionally I was right all along; I couldn’t hear conversations or make out words. Since the nerve damage to my hearing would not recover, I chose a translabyrinthine approach to the surgery, which cuts the eighth nerve making me deaf in my right ear. This was a heavy decision, but when I considered all the choices my parents, surgeon, and I agreed this was most likely to give me the best outcome.

I was told that the timing of the surgery would be my choice, because this type of tumor was so likely to be slow growing, so I made plans to be away later in the month. My doctors asked me, while I processed things and made plans for my upcoming absence, to make sure to tell them if anything about my condition changed, particularly with regard to the feeling in my face. Since the tumor was seriously threatening the seventh cerebral nerve, the secondary goal for the surgery to remove it was to save that nerve. It could be the difference between having half my face paralyzed, I was told, and being completely normal. I kept being assured that I had time.

A week after I was diagnosed with an acoustic neuroma, on March 26, I woke up unable to feel half of my face. On my right side, from my cheek to my chin, everything was numb.

Part two: Surgery