At my last appointment with my neurologist, I sat and listened as she said what I imagine to be one of the most vulnerable, frustrating, and honest things a physician can say to a patient.
I’m doing everything I can for you,” she said. “But you’re not making the progress I hoped you would at this point. I think it’s time to consult with a neurosurgeon.
Alarm bells rang in my ears and I felt a rush of heat envelop my body. Since my diagnosis with trigeminal neuralgia (TN), I’ve had numerous conversations with my neurologist about my symptoms, medications, alternative treatments, and research. She knows how I feel about the surgical interventions available for TN, so it was no small thing to hear her say that it may be time to speak to a surgeon.
Think of it as just getting information. You don’t have to do anything you don’t want to.
Days after that appointment, I broke down while asking myself one of the most seemingly straight-forward yet messy questions chronic illness provokes: Do I need a second opinion?
Truth be told I’ve already had a second opinion about treatment options for TN within my first year of diagnosis. It was with a colleague of my neurologist‘s who seemed to have limited exposure to TN and very rapidly walked through experimental treatments we could explore once I’d exhausted my medical options.
In the cab ride home, I sat next to my husband quietly. As he ordered our favorite takeout, all I could focus on was the uneasy fracture that seemed to be splitting my heart.
I thought I had gone into that appointment with no expectations. I was anxious as I usually am before any doctor’s appointment, but I tricked myself into thinking that I was going in as a blank slate. That I hadn’t thought too much about what could happen in that office.
So I was completely blindsided by how difficult it was to sit in front of a physician and have him say everything I already knew.
It was hard to sit in front of someone — an expert at that — and have them say, in no uncertain terms, that he didn’t know how to help me beyond what I was already doing.
All he did was remind me that I have a condition that has no direct intervention and no cure, facts that can rob a person of hope.
The tax of another perspective
Seeking a second opinion is rational. It makes perfect sense to not defer to the opinion of a single expert. You should gather as much information as you can about your condition so that you can make informed decisions, now and later.
But what no one talks about when it comes to the almighty second opinion is how much it can hurt. Because even if you walk into a doctor’s waiting room believing you expect nothing new, the very fact that you’re waiting for your name to be called means that you’re holding onto hope for a different outcome.
I don’t believe hope is so tenuous to collapse if the appointment doesn’t mimic the best case scenario of your dreams — but I do believe that it deflates when anything less than the best outcome occurs.
I had no idea how heavy the tax of the second opinion could be. It took weeks for me to recognize that the despair in the pit of my stomach was residual from a 30-minute conversation with a neurologist who barely knew me and didn’t have encouraging knowledge to share with me.
Since then, I have been reluctant to sit in front another new expert who I feared would have nothing new to tell me, just reiterate facts I knew and had to make peace soon after my diagnosis three years ago.
When my neurologist recommended I speak to a neurosurgeon, I felt every single one of my defenses go up. I listened to what she had to say, and logically, I agreed with her rationale.
But how could I possibly articulate how hard it was to open myself up to another opinion? How could I explain not wanting to get buried in the “depression” stage of the grief cycle of diagnosis?
And this time, getting another opinion feels like a double-whammy. There is the high tax of sitting in front of an expert and the very real possibility that there is no additional expertise they can share.
The result for me? Bruised hope and potentially a weeks-long emotional hangover.
Then there is my fear of neurosurgery. I have had a lot of time to think about this option and I’ve had a lot conversations about it. One day, I will write more about it.
But what you need to know now is that there is not enough definitive, convincing data on how effective surgical interventions for TN are. If you seek information online, you will perhaps find some dated statistics with limited information on how much a patient’s quality of life has improved after surgery or how many patients repeat the surgery.
The New England Journal of Medicine recently published what I consider to be a general overview of TN with limited data on the effiicacy of surgical interventions coming out of the Sapienza University of Rome. This is a start, but it’s not nearly enough to help someone feel more secure about what surgery can really do for them.
Across social media, there are numerous anecdotes of TN patients who opt for surgery more than once — because even though it didn’t work the first time, they hold onto hope that the next time will grant some degree of relief. But this has scared me more than made me feel comfortable with the surgery option.
Last month, I attended a virtual conference hosted by the Facial Pain Association, and I listened to several neurosurgeons talk about surgical intervention. There was some data presented that I hadn’t heard before, but my previous feelings and conclusions about surgery still haven’t changed.
Perhaps what did change, though, was how I thought about treatment and a so-called cure.
All or nothing
Since my diagnosis, and throughout the conversations I’ve had with my physicians and family, I’ve focused so much of my attention on how desperate people living with TN are.
Because I know how desperate you can become when you’re in the throes of daily pain attacks.
In the absence of direct interventions or a cure, I understand why people opt for surgery. It’s not a decision one makes lightly. However you classify these procedures, surgery is surgery, and therefore it is a major event in someone’s life. And when you must make peace with opting for neurosurgery, the stakes seem higher.
There are the preparation and recovery periods. There’s the potential side effects and medications. There’s the chance that nothing will change or may even get worse. There’s the chance that some new challenge may come up during or after surgery.
In investigating surgery for my own education and awareness, I have been so focused on how surgery isn’t full-proof. A person goes through the ringer and yet surgery doesn’t seem to cure TN. In the best case scenarios I’ve heard of, people can go into remission — for years even — but the TN always seems to come back. The threat of an unpredictable, uncertain return has always cast surgery in an unflattering glow and makes TN a real-life monster under the bed.
But then, I realized something — something that has occurred to me more and more lately, something so obvious it’s easy to take for granted. Surgery — or any other intervention — isn’t about a cure.
It’s about improving one’s quality of living.
I take my medication daily not because it obliterates my pain because, truthfully, it doesn’t. It dulls the frequency of one of the pain types I experience. But I still live with constant pain. That, however, doesn’t discourage me from taking medication because I know how much worse off I’d be without it, even with the side effects I experience.
In acknowledging that fact of my life, I’m able to appreciate other interventions, including surgery, from a different perspective.
And that means that if I do seek a second (or in my case, third) opinion, as my neurologist has recommended, I’m not going for a cure.
I’m going to collaborate with a potential provider on if and how my quality of life can be improved.
This is really about you
The decision to seek a second opinion — or consider new treatment — isn’t black-and-white. It’s never as easy as just making an appointment and showing up. Whether you’re conscious of it or not, you’re holding fast to hope. And within that hope will lie kernels of expectation that wait to be activated.
The second opinion is a battleground for your psyche, then. It’s where you may be forced to confront your despair in living color and that will be bittersweet. It is one of life’s most difficult things to put your faith in a stranger’s hands and ask them to prove that doing so wasn’t misguided.
The truth is that no stranger — medical expert or not — can prove to you that you were right or wrong to ask for guidance. Whether you get the best news of your life or you leave an appointment no better than you arrived, you need to trust yourself and your judgment. You came to understand the landscape of your health and life better, and whatever happened in that examination room, you have achieved that, however hard it can feel.
It’s okay if you’re terrified to ask for a second opinion. And it’s okay of you walk into the doctor’s office with swagger and style. It’s okay if you are hoping against hope. It’s okay if it’s all so overwhelming no matter what. None of this is easy.
But the easiest thing you can do is remember that you’re gathering information to help you live life on your terms — not your illness’s.
You’re doing the best you can at any given moment and that is more than enough to help you figure out how to take your next step.
Note: A version of this piece was first published on my blog on December 2nd, 2020.