The Cost Of Things: A Brain Tumor

by Brigid Sweeney

Perhaps you have heard: Modern American health care is brain-explodingly expensive. All those unnecessary check-ups and blood tests and scans and whatnot really add up.

Yes, well. Here’s the thing. Do you know what can be even more expensive than overly cautious medical testing? SKIPPING the medical tests.

And do you know what might cause your brain to explode in a far more literal manner than a bill with an unfortunate number of digits? A tumor on your pituitary gland, located directly behind your eyes in the middle of your skull. Just kidding: there is no head popping. But there can be brain bleeding, which I think we can agree is still worse than a huge bill.

In March-ish of 2014 I started getting daily headaches.

I thought they were migraines. Or a sign that, at age 33, my notably poor posture and desk-centric job had finally caught up with me, despite years of assiduous exercise? Hell, maybe they were caused by the very weightlifting that I thought was improving and prolonging my life.

The list of possible culprits was endless. The headaches could have been a physical manifestation of incredible amounts of stress I didn’t even realize I was experiencing! Or maybe they were caused by the occasional workday when, racing to meet a deadline, I would subsist entirely on coffee, Think Thin bars and seltzer water?

I had no idea, but I was completely convinced that the pain was related to something I was doing.

So I stopped drinking red wine. I started carefully eating at regular intervals and downloading meditation apps. I convinced my boss (at a journalism job, no less) to pay for a $500 standing desk.

The headaches continued.

WHAT WAS I DOING WRONG?

Six months later

My father, a gastroenterologist who first told me a decade ago that annual physicals are pointless and thereby instilled in me a skepticism for precautionary doctor visits by the young and healthy, finally pointed out that six months of headaches meant I was no longer, in fact, healthy.

I went to my primary care doctor.

She did an exam and confirmed what Google had already told me: They were probably tension headaches. She recommended trying physically therapy and massage for a few months, and coming back if they didn’t stop. We both agreed there wasn’t any reason to get a $1,500 MRI at that point. My deductible, it happens, is also $1,500, so I’d be paying for it entirely out-of-pocket.

I saw a physical therapist who promptly diagnosed upper cross syndrome, which afflicts a zillion office dwellers and can cause tension headaches. Basically, hunched shoulders stretch out the upper back muscles, which in turn cause the chest muscles in front to contract and get really tight. Everything was tight, or weak, or otherwise out of whack. I knew I was messing myself up by not standing up straight.

She gave me some basic strengthening and stretching exercises to do and told me to keep coming back weekly for eight weeks.

I decided I did not feel like paying for all those sessions — see again: deductible unmet — and decided to do the exercises on my own, at the gym where I had worked out for years.

I also did not feel like paying $100+ a pop for massages, so I carefully researched the ones available on Groupon and Gilt City and bought those with the best sports medicine backgrounds and Yelp reviews.

Herewith, my costs:

+ One 30-minute primary care doctor visit: $130. Not billed as an annual exam because I explained that I had headaches when I called to schedule it. In-network provider, but paid in full because I hadn’t met my deductible.

+ One physical therapy session: $130. In-network provider, but paid in full because I hadn’t met my deductible.

+ Three 60-minute chiropractic massages that focused on solving “trigger points” in my upper back, discounted via Gilt City: $130

+ Five 30-minute “fascial stretching therapy” by a woman who treated a lot of Chicago Bears players whose names mean nothing to me, discounted via Gilt City: $110

+ Two extra 30-minute fascial stretching sessions beyond the Gilt City sessions: $120

+ Six 25-minute sessions with a pain specialist who focused on stretching back, chest and neck muscles to alleviate headaches, discounted via Gilt City: $115

+ Subsequent full-priced packages with the amazing pain specialist for a total of 41 sessions, nine of which I have yet to use but are unrefundable: $1,842

Four months later

The headaches were a bit better, thanks to two- to three-times weekly sessions with the pain specialist, but still there. I went to see my ob/gyn because I hadn’t gotten my period in a few months and yet was definitively unpregnant. She ran some blood tests at my insistence.

+ Ob/gyn appointment: $0, because I got smart and scheduled it as my annual exam
+ Blood-work: $39.22. I still don’t know why I owe this; it says “co-insurance responsibility” but I thought the whole exam and basic bloodwork was covered? I need to call Aetna for my One Thing on Thursday.
+ The ob-gyn’s nurse called two days later and told me my prolactin levels were elevated, which was preventing me from getting my period. Prolactin is a hormone that regulates, um, milk secretion, and is generally only high in lactating mothers. I was not breastfeeding. She sent me to an endocrinologist.

Endocrinology appointment: $467.55. It was billed at $733. The doctor billed it as “high complex(ity),” so it was more expensive.

The endocrinologist immediately scheduled an MRI.

MRI at Northwestern Memorial Hospital’s astoundingly high-end, almost spa-like MRI center, required upfront on a credit card: $1,631.79

The MRI showed a large benign growth on my pituitary gland.

Thus began a swirling array of neurosurgery consultations and more endocrinology appointments. I was told dozens of times that the pituitary is the control center of the brain that oversees all hormone production. A tumor fucks everything up and can send all sorts of levels askew, resulting in my weird milk hormone levels. And headaches.

Costs!

+ Endoscopic transsphenoidal removal of a pituitary macro adenoma, which means an amazing neurosurgeon of whom I remain in complete awe threads tiny tools up your nose and into your brain to pluck out the grape-like tumor: $1,711.31. Actually billed at $72,182.95. This also covered the non-surgical parts of the surgery, like anesthesiology and pathology tests on the tumor. Interestingly, the actual removal of the tumor only cost $9,550, while the “operating-recovery room” line item is listed at $25,856. Two nights in the hospital cost $3,340.

+ Four bottles of Ocean Mist nasal spray*, because after the surgery you feel like you have the worst sinus infection of your life, and I was told nasal spray helps. Looking back on everything, this was undoubtedly the stupidest way I spent my money: $16.68

Two packages of Zyrtec — same reason but actually helpful: $37.21

Antibiotic prescription: $0

Desmopressin prescription: Also $0. The hormone that regulates my thirst was disrupted by the tumor and didn’t normalize post-surgery. I will have to take this forever to ensure that I am not insanely thirsty and peeing every 15 minutes. I have no idea what I will have to pay next year, when I haven’t hit my deductible or maximum.

Follow-up MRIs at least once or a twice a year for the foreseeable future: Don’t really want to think about it.

Total cost of my health odyssey: $78,426.36

Total cost I paid, after insurance coverage: $6,482.58

Total I would have paid had I immediately had an MRI the first time I went to the doctor: $3,000

TL;DR: If you start to feel crummy, it might be worth it to pay for medical tests sooner rather than later, even if you read and respect Atul Gawande.

Also, it is preferable to feel like a paranoid, high-maintenance prima donna in front of a doctor and politely insist on an MRI than it is to feel like a down-to-earth, chill patient who declines an MRI and then spends thousands of dollars on massages and treatments that do not actually solve the problem.

But, you know, life happens. You make decisions as best you can in the moment. The past is IN THE TIME OF THE PHARAOHS, as my meditation teacher likes to say. So why dwell on the extra $3,482.58? I now have a brain that doesn’t hurt and I also have a delightful new hobby of Google stalking Northwestern’s entire neurosurgery department. WORTH IT.

Also, you definitely don’t need Ocean Mist nasal spray.

Brigid Sweeney is a business journalist in Chicago who thinks you should go get that thing checked out. Follow her on Twitter @Brigid_Sweeney.

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