I’ve never enjoyed waiting for a stranger to examine my prostate but I at least assumed it would happen the morning I went to see a urologist.

For several years, I’d noticed a subtle decline in my libido which seemed to worsen in more obvious ways last year. I certainly felt challenged by the increasingly imbalanced Seattle dating scene but I also just didn’t seem to be turned on in the same ways I remembered. It could have been due to aging and psychology, but it seemed like there might be something else going on.

I brought in what lab work I had, filled out an extensive survey and waited for the doctor. He spoke to me for a few minutes and suggested I should just begin using pills for erectile dysfunction (ED). He didn’t ask me much about what I’d been experiencing. He didn’t examine me. He didn’t order any tests. Instead, he brought me a paper bag full of samples of Cialis, Stendra and Viagra. For fifteen minutes of his time, which turned out not to be covered by my insurance, I’d receive a bill for $302.

viagra brain tumor

The Prescription for My Soon to Be Diagnosed Brain Tumor

This was a new experience for me. I was struggling with a health issue central to my quality of life and happiness and felt unheard, dismissed and mistreated by a doctor who seemed to act as a courier between the pharmaceutical industry and patients. Though I was relieved to have avoided a prostate exam, I left dismayed and a bit depressed. This was the specialist my doctor had suggested but I left feeling unsure about asking the medical community for help with these symptoms again.

Visiting the doctor can be intimidating for many of us. We’re often raising vulnerable questions in settings that elevate medical professionals as authority figures surrounded by staff and expensive equipment. I grew up in relative privilege, raised in an upper middle-class environment, which made facing doctor’s offices a bit easier. But it can still be a challenge, likely for all parties – I know I have annoyed and fatigued more than a few doctors this year in my efforts to advocate for myself.

It turns out, what I was experiencing wasn’t exactly ED, it was different and more subtle. If the urologist had inquired, he would have found that I was primarily struggling with arousal, something I’d later learn is partly related to a specific class of erections, of which there are roughly three: psychogenic (driven by thought, observation, or fantasy), reflex (driven by touch) and nocturnal. In the prior year, my psychogenic and morning erections had declined steeply. And while ED can be psychological it can also be related to circulatory disorders. Over the previous four months, I’d purposefully lost 20 pounds (eventually 30) and significantly reduced my blood pressure. Soon after, I had a heart X-ray showing no arterial plaque – a benefit of 20 years of vegetarianism.

So not surprisingly, the ED pills didn’t really help. When I experimented taking half tablets of the samples, I had stronger erections but I wasn’t more turned on.

I’d also been having low back and hip pain, so I went to see a physical therapist with a specialty in pelvic issues to rule out spinal and neurological problems. She, in turn, pointed me to a naturopath who specializes in sexual medicine1, but I’d been so bummed out by my experience with the urologist, I was reluctant to make an appointment. It wasn’t until another physical therapist remarked on my body awareness that I was inspired to ask for help with my arousal symptoms again. Her comment restored my trust in my own instinct that something unusual was going on.

I went to the naturopath, who took time to ask me a wide variety of questions, evaluated the size of my testicles beside a ring of similarly shaped beads, conducted a prostate exam and prescribed a lab visit for thorough bloodwork.

It was 8 a.m. and I had been fasting overnight when I handed over my insurance card to the lab technician. Despite verifying my coverage, she required a credit card deposit for $1801. While I’ve reported on stupid health insurance experiences, and would ideally have questioned her, I was too tired to resist.

Labcorp Prolactin Test

$1,801 Deposit Against Verified Coverage

Had I not benefited financially from eight years at Microsoft, I might have left without getting the test, which may have saved my life.

The results showed that I had mildly elevated prolactin, and the naturopath’s office instructed me to return to the lab so they could retest it, without further explanation.

Mild Prolactin Elevation

Lab Results for Mild Prolactin Elevation

It was Friday afternoon, so I began to Google.

Most commonly, prolactin aids in milk production for new mothers, but elevated prolactin can also reduce our sex drives. In males, it can be caused by prolactin-producing brain tumors called prolactinomas, which can often be cured through medication or transsphenoidal (sinus) surgery. I read on UCLA’s website that mild elevations in prolactin can also be caused by “large pituitary tumors… [causing] compression of the pituitary stalk, the connection between the pituitary gland and the brain,” but that these are rare. I assured myself that it was pretty unlikely that I’d have a rare brain tumor, but it was creepy. And I was wrong.

Some doctors don’t concern themselves with mild elevations in prolactin but the naturopath sent me for a brain MRI just to rule things out. She told me not to worry, but none of her explanations for these symptoms seemed to apply to me.

A bit about a brain MRI: you’re inside a narrow tunnel, your head is enclosed in a plastic cage, and you’re asked to remain very still while the machine around you makes loud banging noises for 30 to 40 minutes. If you’ve had traumatic experiences in your life, as I have, it can be even more difficult. This was a bit too much for me to do without medication. They gave me Xanax.

The MRI technician surprised me by telling me I needed an IV of gadolinium, a substance used to reveal abnormalities. I was triggered by the need for an unexpected intravenous substance. Since I really didn’t expect the MRI would reveal anything, I almost got up and left. Thankfully, he said he could wait to insert the IV until we were sure I could remain comfortable in machine.

After the initial brain scan, it took him two attempts to properly place the needle for the IV. I didn’t think anything of it at the time. Later, I guessed that he was nervous about what he’d seen in the initial scan.

He had unofficially discovered my brain tumor, a meningioma in the center of my skull.

MRI from Meningioma

Side and Overhead Slice of My Tumor

The radiologist’s report stated that the tumor had filled the space within my cavernous sinus around many facial nerves and my left internal carotid artery. It was climbing onto and over my optic nerves and surrounding my pituitary gland, enough so that we now noticed my left eye protruded slightly more than the right. The tumor also pressed into my brain stem. Later I’d discover it was likely the cause of my slight but chronic head tilt to the right.

My surgeon was surprised that I’d arrived free of headaches and vision problems. In fact, every doctor I later consulted seemed curious to know how I discovered the tumor. It was only because I’d rallied to ask for more help with my libido that I’d found a doctor who ran tests that revealed the tumor.

My surgeon thought it best to perform a craniotomy to reduce the mass of the tumor and its effect on my vision and pituitary gland. Targeted radiation would be needed after.

Before she opened my skull I wanted to measure all my options. I decided to hire a health care firm to assist me in finding additional expert opinions. The neurosurgeon’s receptionist commended me for this saying she’d never seen someone thoroughly explore his options. But this was only possible because I had the resources to do so.

The second opinion came from a neurosurgeon in Atlanta. He concurred with my surgeon’s recommendations. But, when I flew to meet with another surgeon in San Francisco, he and his colleagues were firmly against surgery. He traced his finger from my left ear to my right ear, towards my left eye and back to the starting point, demonstrating how invasive surgery would be. Instead, he prescribed 30 days of mild stereotactic radiation and, essentially, that I hope for the best. When I asked him how I would treat my reduced libido without surgery, he said I should “just take the blue pill.” A second doctor had recommended Viagra for my brain tumor.

Back in Seattle, my neurosurgeon and radiation oncologist took time with me to review my case. Their patience and confidence convinced me to move forward with surgery.

Most of this – the libido loss, the pharmacological urologist, the craniotomy – might have been avoided if I’d known to advocate for myself this well earlier.

I actually began having unusual pain on the left side of my forehead back in 2006. I consulted with my doctor and two sinus experts. To minimize radiation exposure, they conducted only a frontal CT scan, which showed a narrowing of my left sinus. One specialist wanted to surgically widen it but this approach didn’t make sense to me (I didn’t have traditional sinus congestion) nor would it have helped. I chose to live with the discomfort presuming it was a minor allergy that the experts couldn’t diagnose or treat.

But it was my tumor beginning to grow within the cavernous sinus, placing pressure on my nerves. Had we diagnosed the tumor then, I might have been able to avoid a craniotomy.

cavernous sinus

The Cavernous Sinus – Wikipedia

This experience has taught me how important it is to get to know your body. Practices from martial arts to yoga and meditation can help you learn to tune into subtle changes. If you don’t feel comfortable asking doctors thorough questions or aren’t given sufficient answers, don’t be afraid to go elsewhere.

The insurance system is rushing our doctors, who are paid in such a way that they need to squeeze in more and more patients to earn a living. Recently, a doctor I consulted with interrupted our session at the fifteen-minute mark explaining that we were over time and asking if he should schedule a 30 minute appointment for our next visit. The health care system doesn’t encourage doctors to take time to integrate much humanity into discussions about conditions that can be literally life-altering for patients.

Months after my diagnosis, I phoned the urologist and was directed to his assistant’s voice mail. I chose to explain everything, but wasn’t sure if I’d hear back from him at all. To my surprise, he called me early that evening, and seemed like a different person. He was energetic, sharp, engaged and curious. He spoke like a professor, which apparently he sometimes is.

In many ways, he redeemed himself. But the fact remained that there were some important things he hadn’t asked me about my life, sexual arousal, and overall health that may have pointed us in a more productive direction.

Doctors often aren’t used to patients being tuned in enough to their own bodies to meaningfully answer such questions. Yoga and meditation have taught me to pay attention to my body, and doctors are sometimes skeptical of the detail I provide. As a result, I’m pretty certain I’ve worn out a handful of my favorite doctors this year with my observations and questions. I sometimes come into appointments with two to three pages of them. I do my best to rush through them, but I also realize how complex my health issues are, and those 15 to 30 minutes usually aren’t enough. I’ve begun to ask for longer sessions.

lorazepamI’m deeply appreciative of my neurosurgeon, the remarkably kind anesthesiologist, their staff members, the nurses, my radiation oncologist and his team, the naturopath who discovered the tumor, and my primary care doctor and physical therapists. Their patience and expertise instilled confidence that allowed me to walk with relative calm into a surgery that I expected would scare the living shit out of me. My assertiveness in asking for what I needed and their willingness to answer helped me arrive at the operating table without the fifteen tablets of Valium my surgeon had prescribed. I didn’t need them.

(At least I don’t think I did. When I took this photo I noticed there were only twelve tablets. But I don’t remember taking any. I think I threw three into a Ziploc bag to take with me just in case, but have no idea what happened to them. Brain surgery can affect your memory.)

I was lucky to have these people on my team. In general, our culture forces us to approach all kinds of difficult questions with our doctors in increasingly brief conversations. I encourage you to adopt practices that help you get to know yourself and your body, and trust your instincts. Ask your questions, and if medical professionals are not supportive, walk away and ask for help from others.

I feel tremendously fortunate and well cared for this year, but personal advocacy, confidence and resilience were essential to my path.

See also What We Can Learn from My Brain Tumor and Operating with Fear. I’ll be writing two more essays soon, about surgery and radiation. Follow me on Twitter for updates.

Footnotes

1. The naturopathic sexual medicine specialist who guided me towards finding the tumor is Dr. Serena McKenzie (identified with her permission). She’s also begun blogging at HuffPo.

Posted by Jeff Reifman

Jeff is a technology consultant based in the Pacific Northwest. Try scheduling a meeting with his new startup Meeting Planner (https://meetingplanner.io), simpler, faster scheduling for work or play and read his series about building it). Follow @reifman on Twitter.