One year later
On this day last year, I had a tumor removed from my head. I thought it was the end—but it was just another beginning.
One year ago today, I had a tumor removed from my head. Doctors went through my nose, broke a small bone behind it, and scooped out a mass on my pituitary gland, a pea-sized gland that sits right below your brain and controls major hormone function. One of those hormones is Growth Hormone, which, for me, was stimulating overproduction of IGF-1, another hormone, from the liver. This disorder is called Acromegaly: It’s already wreaked havoc on my body, and if I hadn’t discovered it by accident early last year, it could’ve been much worse.
I thought one year ago today marked the beginning of the end of this health journey. My doctors were going to take the tumor out, and after about three months, I’d feel great. No more swelling of my hands and ankles. No more inexplicable weight gain. No more exhaustion. No more excessive perspiration. Six months before my 32nd birthday, I’d be golden.
But it didn’t work out that way.
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This process has been anything but linear, and so it can be challenging to explain it in linear fashion. That’s why I’m putting it all down in print to help make sense of what my body has been through, and perhaps help other people who find themselves feeling helpless, without answers, or like a tiny cog in our dizzying health care system.
It’s impossible to say when the tumor first formed, but I can say with near-certainty that I never would have discovered its existence had it not been for a literal warning noise.
In June 2015, I was about to head to Austin for a work trip when I heard a persistent pounding in my right ear — like a pulse or a heartbeat. I went to urgent care and a doctor took out a healthy pile of wax, but the pounding beat on. In the months that followed, the sound would come and go, until eventually it was constant. You don’t realize what a luxury it is to lie down at night in silence until you’re deprived of that luxury.
I went to an ENT. I went to my general physician. I tried acupuncture. No one could understand the problem I was describing, and I started to feel like I was crazy. My (now former) general physician said, and I quote, “You’re just going to have to live with it.” But that wasn’t an option.
As my mental health deteriorated because of the drumbeat in my ear, my dad continued to sleuth for solutions. And finally on one fateful day in 2017, a magical combination of Google search terms turned up the name of a doctor who would change everything: Dr. Athos Patsalides, an interventional neuroradiologist at Weill Cornell Medical Center, right here in New York City.
I called Dr. Patsalides’s office, described my symptoms to a nurse, and she said “that sounds like Pulsatile Tinnitus.” So I wasn’t crazy. It had a name.
Pulsatile tinnitus is “a symptom that affects nearly five million Americans. The sensation of hearing a rhythmic noise, such as a heartbeat, swooshing or whooshing, from no external source, is, at best, a little unsettling; for many, the near constant sound exceeds annoyance and becomes completely debilitating. Nearly 60% of patients who experience this issue also suffer from some form of depression or anxiety. These rates are significantly higher than those associated with other chronic conditions due in large part to the difficulty of diagnosing the root cause of symptoms.”
But even with a probable diagnosis, I still couldn’t move forward. After getting laid off in late 2016, I was still working as a contractor in mid-2017, and my insurance would barely cover any of the necessary testing and doctor’s visits. So I waited some more, until finally my contract job brought me on full time. It was really the only reason I was so desperate to get on staff: to get the health insurance I needed to stop this noise once and for all.
A late January 2018 MRI of my head and visit with Dr. Patsalides revealed my pulsatile tinnitus was caused by a partial blockage of a vein in the right side of my head, which made it more difficult for blood to flow through. The sound I heard was blood forcing its way through the vein. But that’s not all it revealed.
The MRI imaging also had my pituitary in the field of vision, and the radiologist reviewing the results could see it didn’t look right. So a day after my official Pulsatile Tinnitus diagnosis, I got a call from the doctor asking me to come back in for another MRI specifically of my pituitary to get a closer look at this concerning mass and to see an endocrinologist. A few weeks later, the endocrinologist confirmed: I had a benign tumor on my pituitary gland, and I would have never otherwise known about it.
Knowing you have a tumor inside you is a strange sensation. You can’t actually feel it growing, but you can convince yourself you do. It feels like an unwelcome visitor, one that you desperately wish you could throw out for causing destruction to the premises. But reaching inside my head and pulling it out wasn’t an option, so I had to be patient.
Throughout the course of 2018, my body was pushed to its limits. I endured multiple painful shots in my butt to bring down my IGF-1 levels and shrink the tumor, which turned out to be largely unsuccessful. Doctors made a small incision near my groin and snaked a mesh metal stent up through my entire body to unblock the portion of the vein in my head. I spent a night in the hospital and a couple of weeks recovering. The sound was miraculously gone, and Dr. Patsalides became a hero in my book. I needed to go on blood thinners for six months after the procedure, which meant the tumor removal surgery would have to wait. I was exhausted and bloated and irritable and depressed and scared. At the same time, I was working my mind and body to the bone, helping elect Democrats to the House of Representatives. Election Day was, as history will recall, a resounding success, and a week later, I went under the knife. The three days and nights in the hospital were some of the worst of my life. Hospitals are oddly counterproductive to healing. I went home to my parents’ house for three weeks of recovery, endured debilitating migraines, restless sleep, and experienced a new level of exhaustion. I also couldn’t stop peeing and was incessantly thirsty, a common side-effect of angering your pituitary. Still, I lived with the hope that in three months time, the dust would settle, and this would soon be past tense.
February of this year rolled around, and blood work revealed my IGF-1 level remained elevated. I also still felt like crap. The surgeon hadn’t been able to get every last cell because they were too close to my cavernous sinus. You don’t want to mess with your cavernous sinus.
I was angry at my doctors for making me believe the surgery would be one and done. I was angry modern medicine provided no easy solution. I was angry that these tiny little cells in a dark corner of my brain were keeping me from moving on.
One day soon I’ll share more about what I did next, alternative treatments, and how I’m doing now, but I just wanted to mark this anniversary by recognizing all that I’ve been through. I want to say I’m proud of myself for making it to this point. And I want to tell anyone struggling with their health to never stop fighting, never stop googling, and never stop asking questions until you get sufficient answers. Your body is yours and yours alone, and you should honor it not just by taking care of it, but by seeking diagnoses and treatments that feel right to you.
Thank you to the people who’ve steadfastly supported me through it all. You’re a small but mighty crew, and reflecting on it one year later, I would’ve never made it through without you. It can be easy, as I’ve seen, to run away from a person in need. But you ran towards me. I’ll never forget it.
Until next time.
M
