Dispatches After Brain Surgery on Long Island
From the (Silent) Other Side of My 5-year Fight to Cure My Rare Brain Condition
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4 weeks ago, We drove 11 hours from Michigan, through a rainstorm, to Great Neck, Long Island for brain surgery. I spent the last seven months relentlessly elbowing my way to the top surgeon in the world for my condition. Before that, I spent five years with doctor after doctor telling me my condition was somehow both made up and incurable. I had surgery to cure it 22 days ago.
I’m getting ahead of myself. Let’s start from the beginning.
In February 2020, on my way home from the last Heart of It Writing Retreat before the pandemic, I descended the elevation of the house in Jemez for the last time (unbeknownst to me), and my left ear developed a deep pressure. I assumed it was an ear infection and tried to take it in stride. I rolled my neck side to side as the pressure deepened, and I planned to deal with it when I made it home. On the 16 hour drive my head began hurt, my ear throbbed, I couldn’t hear out of my left side – and then... it never went away. I began to develop splitting headaches, pressure in the left side of my head, inability to hear out of my left ear, and the most debilitating of the symptoms: nonstop pulsatile tinnitus that would become a defining part of my interiority for the next half decade. Since February 2020, I have heard my heartbeat in my head near constantly. It sounds something like a dishwasher or a sonogram, and it, at times, overtook my capacity for most anything. UC San Francisco defines pulsatile tinnitus like this:
“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.”
In the beginning, there was splitting pain. I would lay in the bed of our 400 square foot studio and oscillate between silence and sobbing, my mouth slightly open in a maddened attempt to alleviate the sound. In July 2020, in the chaotic haze of the pandemic and with state health insurance in Louisiana, after a desperate visit to a walk-in clinic, I made my way to an ENT where they did a full hearing test, vacuumed out my ears, sent me for an MRI, and determined nothing was wrong.
I wouldn’t say I learned to live with it, but I learned to live with the misery that this was my new reality. I learned that if I pressed on my neck I could make the whooshing in my head stop temporarily, by effectively halting the blood flow to my brain. I slept with a neck pillow pressed into my jugular. I sat with the left side of my head in my hands. I held my fingers to my vein near constantly to get relief from the maddening sound. I listened to everything louder. I stood in the shower to hear the running water instead of the inside of my own head. I tried to walk it off. I tried to sleep it off. I tried to shake my head side to side to knock something loose. I tried to listen to it. I tried to ignore it. I took tylenol and advil on a near constant loop to relieve the pressure pushing from the inside of my skull.
The sound is so maddening, some people think Edgar Allen Poe’s short story Telltale Heart is about pulsatile tinnitus, and some people think Van Gogh cut off his ear because of pulsatile tinnitus. While neither of those cases are confirmed without a doubt, scholars and doctors have rounded up enough evidence to show that it’s possible that they suffered from the condition, and based on my own experience, I believe it.
All of 2021, 2022, and 2023: day in and day out, in sickness and in health, there she was: my heartbeat in my head.
When I moved back to California, I started over with a new set of doctors. In 2023, my primary care physician at the Native clinic in my hometown suggested I may have something called Meniere’s Disease, and it was the first time I felt like someone actually took my symptoms seriously. She ordered some more tests, sent for an MRI (again), and we were set to begin the process from square one. Before I could get off the waiting lists and into the offices of the right doctors, I moved to Michigan for grad school.
During the four years between the onset and last September, my life changed in ways I hadn’t registered, like the frog swimming in the simmering poet. I did not go to loud places if I didn’t have to, because I couldn’t hear well over the pulsatile tinnitus and pressure in my head. I always had my right ear toward whoever was speaking and learned to (very amateurly) read lips to supplement my low hearing. I began to tell people I had compromised hearing and asked them to speak up. When my capacity was low and I couldn’t talk on the phone, I’d text my ear is bad today and sit alone with the whooshing. I spent the worst days in bed, succumbing to the sound.
When I began grad school, I knew I had a finite amount of time with fancy, big budget health insurance – something I hadn’t had in all my life. In September 2024, I immediately met with a primary care physician, and she ordered another MRI and MRA. My tests were set for mid-November.
While I had spent years researching my condition and feeling like I’d reached dead end after dead end, I went back to the internet to help prepare me for my upcoming tests. In the depths of reddit threads and facebook groups, I met people that helped me understand my condition and helped me find the language to articulate what I needed.
In November, I sat in an MRI machine with a cage over my head, motionless, for two hours while they ran an MRI and MRA with and without contrast.
Before they sent me in, they asked me if I’d like to listen to any music. I asked them to put on Noah Kahan’s album. They put on a single Noah Kahan song on repeat so, alongside the machine-gun sound effects of the MRI, I listened to Stick Season for 45 minutes before they finally buzzed in and asked me for an update. Uh, everything’s going great except I’m listening to one song on repeat. We all had a good laugh, and then I finally heard the rest of the album. During the MRI, the tech burst a vein in my wrist from the contrast and that vein is still burst as I type this, casting a shadowy trail down my right hand.
Leaving the radiology lab, I was optimistic for an answer. Within hours the results were in.
Normal.
Nothing to indicate anything. It’s just... in my head and no one else can see it.
I was crushed.
So I went to Reddit.
I then went to my new doctor to ask for a specialist to read the scans, and she refused and told me the scans were read by someone who was qualified enough.
I spent hours looking at the scans of my own brain, trying to find the canary in the coal mine, disempowered by doctors unwilling to believe me and who just expected me to wait for the next doctor in line to tell me no.
Over the previous few months, I finally began to tell the people close to me what my experience with this condition was like, and it began to illuminate just how isolated I had become.
So, I went back to Reddit.
I watched everything. I read everything, I studied everything that was available to me and Dr. Patsalides wrote all the studies, he conducted all the trials, he spearheaded all the research.
In November, I paid the $250 consulting fee for him to read my scans. My appointment was set for February 11, 2025. It felt like the most important thing I’d ever put on my calendar.
When the day came, I skipped every other obligation. I showed up to the virtual visit 20 minutes early and wrote out everything I remembered as I waited for the consultation to start.
He had absolutely no doubt about my condition, and he had no doubt that he could perform the surgery that could cure it.
Venous sinus stenosis in the occipital vein and a jugular bulb diverticulum. He pulled up my scans and pointed to exactly where he saw it, where he saw what every other doctor didn’t see, wouldn’t see, and wouldn’t believe was there.
Our visit lasted less than 20 minutes. He told me I had a rare variation of this already rare condition – so much so that in the 1,000 times he’d performed this surgery, there had been one other with my particular variation.
I jotted down notes to try and keep up, to try and understand everything I could about what my options were.
The best I can explain it to you is this: in my occipital vein on the left side of my skull, which is a vein that only a portion of the population has, a vein has been pinched like a garden house. This pinch has caused increased pressure as the blood moved through the vein, creating an aneurysm, or a little bubble in the vein, in which blood experiences turbulent flow – think of the way water shoots through a kinked hose. This turbulent flow is very close to my left ear drum, and it is what I have been hearing since February 2020. To fix this, Dr. P would fill the aneurysm with platinum coiling — fed up through my vein like metal hairs one at a time — and open the vein with a stent, which looks like an old school finger trap, if you’re a ‘90s kid and remember those. All of this would be done through my arteries.
I was going to have brain surgery through my groin and wrist.
He asked if I wanted to move forward with the procedure.
I said with 100% certainty, absolutely.
He took me on as his patient.
I would be headed to Long Island for brain surgery on May 7th.
The dogs stayed with B’s mother, and he flew to Michigan from Oklahoma. We arrived on a Monday with surgery scheduled for Wednesday. On Tuesday, we had Thai food with an old friend, we saw Hadestown on Broadway, we walked Times Square, we rode the Long Island Rail Road back to our hotel, and at midnight I began to fast for brain surgery.
I was awake for the first portion of the surgery, in which they sent an imaging device in through my femoral artery up to the veins in my brain to find the pinched spot. I didn’t feel any pain, but I felt scratching in my skull and heard what sounded like car keys jangling inside my ear.
Once they found it, they called B, and put me under general anesthesia.
When I woke up three hours later, the world was quiet to me for the first time since before the pandemic began.
I opened my eyes to Dr. P holding my hand, asking what I could hear. I said it’s quiet. I began to cry. B began to cry.
I spent the evening in the recovery room and the next few days in our Great Gatsby themed hotel room.
It’s been nearly a month, and the heartbeat in my head is gone.
***
Thank you for reading. If you have any questions about the procedure or the finite details, I am more than happy to answer.
Here’s some recommendations to close us out:
The memoir Heart Berries by Terese Marie Mailhot. A vivid, urgent account of the authors time in a mental health facility, growing up on a reservation, and finding her way to the page. It’s short, sharp, and cuts to the bone. I highly reccommend.
“Talk” by Lucy Dacus. It does somethin’ to me.
Jake Skeets poetry collection Eyes Bottle Dark with a Mouthful of Flowers changed something in me, especially the poem Let There Be Coal. I highly recommend this award winning collection.
Sitting by the river and counting the birds, finding their babies. I’m in Vermont at Vermont Studio Center, and this is one of the most precious ways I spend my time (the next newsletter will be about Vermont, promise!)
As always, thanks for reading
xoxo, des
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