In the Loop.
How a tiny device that costs as much as my car may hold the key to diagnosis.
My Christmas miracle this year just might be the placement of an implantable loop recorder last week at UVA Health in Charlottesville, VA.
I waited months to get in with a new cardiologist at UVA. I’m trying to live life as if I have a future, but the lack of a theory for my history of loss of consciousness and sudden cardiac arrest (SCA) is…troublesome. When I left the Bethesda campus of the National Institutes of Health (NIH) over a year ago, having completed seven days of inpatient EEG testing with top epilepsy researchers, a big fat question mark was placed on my epilepsy diagnosis. The symptoms that brought me to NIH after my SCA were not seizures, and withdrawing anti-epileptic medications didn’t provoke any abnormal brain waves. This was considered about as conclusive a rule-out as one could get. I haven’t taken epilepsy medication since last October and haven’t had a seizure.
My case is full of great news and shocking luck, but it’s a bit hard to feel at ease when my life and plans depend on such a shaky expectation that I’ll be able to maintain a heartbeat, sit or stand upright, and stay conscious at will.
Epilepsy is a default diagnosis that doesn’t really explain anything, but being labeled a “person with epilepsy” meant I had a socially and legally recognized disability. I had support groups. I knew which foundations might offer legal support related to my health problem. I had a name for that problem. Now, I still carry the negative connotations and driving restrictions of my history of supposed epilepsy, but I’m likely not an epileptic.
This new information begged a lot more questions than it answered.
My local cardiologist was completely un-phased by the NIH findings last year. To him, the case was simple: I tested positive for COVID at the time of my SCA; I’d had a vaccine booster 3 days prior; the heart MRI showed what was likely acute myocarditis. He was happy to call it viral myocarditis, prescribe pills for the rest of my life, surgically replace my S-ICD (defibrillator) when its battery dies, and take our chances. If I hadn’t had the prior history of passing out and convulsing, including one such episode the week before the SCA, I’d see his point. As things stood after the NIH study, though, I was beginning to have grave (pun intended) concerns about my heart function.
My new cardiologist tends to agree. “After all,” he said, “you shouldn’t die from a seizure.” He gave the disclaimer that he’s a cardiologist, so everything looks like a potential heart issue (when you’ve got a hammer, everything looks like a nail), and then he offered a few ideas for further testing. First, UVA specialists reviewed my MRIs and revisited my genetic testing. They agreed with all previous analyses—nothing interesting there. Next, he ordered me a loop recorder placement to see what’s going on with my heart rhythm.
Loop recorders are small devices (see below photo) that get surgically implanted under the skin on your chest. Mine, the Assert IQ, has a battery life of up to 6 years. During that time, or until a diagnosis is reached, I’ll be monitored remotely once a month. The device uses Bluetooth and an app on my iPhone to store continuoous data and send it to a secure network. I can also use the app to record manual symptoms (such as if I experience another loss of consciousness, severe palpitations, dizziness, etc.) This little guy even has built in algorithms to detect certain abnormal rhythms.
You can look up the basics on Mayo Clinic or the Abbot website. What I wanted to know, when I found out I had a procedure date set for last week, was: (1) How much will this hurt? and (2) How much will this cost? In that order.
When Googling wasn’t much help, I went on a few SCA survivor Facebook groups and searched for the term “loop recorder.” There were a few questions and answers, but not much detail. Everyone who had the device seemed to say that the surgery was no big deal. A few had luck getting a diagnosis. I tried to find data on the rate of diagnosis, and one study claimed that loop recorder implantation “determines diagnosis and initiates new therapeutic management for nearly one-fourth of patients” (Source). Another concluded that loop recorders were “able to achieve an etiological diagnosis in 54.1% of patients with unexplained syncope, presyncope, or palpitations suggesting cardiac arrhythmias” (Source). Seems worth it.
Then there was the cost. I freaked out a bit when I received an initial estimate of a copay in excess of $5,000. I called my insurance company, positive UVA had made a mistake. Chris and I have some of the best insurance available—Blue Cross Blue Shield Federal Employee Program. But the price tag was no mistake. It turns out that in addition to $400 in copays to the hospital and surgeon who would perform the 15-minute procedure, I would owe 30% coinsurance on the device itself. The device was quoted at about $23,000—about the current market value of my 2021 Mazda!
Sticker shock gave me and Chris pause. I messaged my UVA cardiologist to see if there were any patient programs through the manufacturer to bring down the cost (there weren't) and to make sure this was the best next logical step (it was). As someone who hasn’t worked full-time in over a year and will start making school payments next month to work towards a career change, it was bad timing for this next financial hit. I thought very hard about ceasing the investigation entirely. I thought about leaning into the uncertainty and going along with my local cardiologist’s surface-level theory and treatment plan.
I couldn’t do it. I may drop dead again either way—indeed, we all eventually do. But to not ask these questions, to stop trying to understand my system, when it’s given me such stark cries for help…that would feel like a form of slow suicide. Chris and I talked it over. I confirmed the surgery date. We prepared to fork over the cash.
And then, there I was, wide awake on an exam table getting jabbed with a local anesthetic. “This is the worst part,” said the surgeon overseeing the actual guy doing the jabbing and swirling with the needle. I cringed, I couldn’t help it. It felt like they were sinking that syringe way too deep, way too close to my long-suffering heart. I did go numb in that area shortly afterwards, and they covered my face with a paper cloth. The “pinch” from being cut open was worse than the pain of the lidocaine injection, and the “pressure” from the device being jammed into a pocket under my skin was worse still. The 6-year battery means a slightly longer device, and they spoke to each other of needing to “get it all the way in.” It was a long five minutes, but then it was over. A couple stitches and a couple steri-strips were covered with a bandage and I was working with the device rep to set up the app on my phone while still feeling a bit violated and trying not to puke.
I didn’t puke. The lidocaine lasted the hour and a half drive home from Charlottesville. The pain woke me up for a couple hours that first night, after Tylenol and anesthetic both faded. I iced the area continuously for the first 24 hours, which helped a ton. And while I did not relish the procedure, I can see how, with time, one would look back and claim that it wasn’t a big deal. Already, four days later, I’m cleared to begin exercising again. I can move my left arm freely without it pulling on my breast and the skin around the incision too much. The only thing that grosses me out is the jostling if I forget and jump or jog—those of us with breasts may feel the device extra, and I find a very supportive sports bra to be essential at the moment.
As for claims that the device would hardly be noticeable, time will tell. In a basic tank, the wound looks fairly prominent to me (see above). I’m impressed that despite being small chested, the recorder is thin enough not to poke out of my skin. And let’s be honest. In under two years, I’ve had a breast lump removed on the right and an ICD implanted on the left. The loop recorder is the least of the battle scars I will proudly display under the red bikini I’m packing for our trip to Florida next week.
I hope this detailed account is helpful to anyone contemplating a loop. Here’s hoping the financial investment, a slightly gross five minutes, and one night of interrupted sleep pays off in a big way over the coming months.
If you’ve had an ILR yourself, please comment below about how it aided (or didn’t) in your diagnosis!
Hey Lauren. After all the headache of having the device put in, I hope that there is a diagnosis for you in the end. Hopefully it does not take six years as well. Best wishes.