The MRI Problem: Worsening Symptoms in Survivors Can Lead to an Unnerving Feeling

A brain tumor survivor’s recent onslaught of symptoms caused her to reach out to her neurosurgeon for reassurance that nothing was wrong. An immediate response to bring her in for an MRI caused her heart to sink.

Recently, the symptoms of my brain tumor have been a lot worse. My vertigo is more noticeable. My ear on the side where my tumor was throbs at night and sometimes, weirdly enough, I drool.

I’m pretty sure it’s nothing, because the type of tumor I had leaves a host of symptoms behind. Plus, aside from these symptoms, I’ve been healthier than I’d been in a long time. I’ve cultivated a habitual workout routine, I’m eating well, and I’m working full time.

Given how much progress my body had made, I figured it couldn’t hurt to reach out to my good ole neurosurgeon for some reassurance to not worry that my progress would be undone. I sat down to write him an email, downplaying any fear in a playful and light tone. I got a message back quickly; my doctor is great like that. In the past, I’d grown used to doctors telling me I make things too big in my head, so I expected a jovial tone back. Instead, I was met with steady concern and confusion at my symptoms and a gentle “why don’t we go ahead and get that MRI since you’re five months out since the last one.”

As someone who had recently graduated to a yearly MRI, my heart sank at this. The funny thing is, I’ve spent years begging doctors to take my symptoms seriously. Years ago when I diagnosed my own CSF (cerebrospinal fluid) leak, every doctor and resident I saw at the time spent our first encounter trying to convince me that it wasn’t a CSF leak, only to discover that what I was feeling was happening was happening. So, I’ve always wanted to be taken seriously, but when this wonderful and caring surgeon and his team took me so seriously so quickly, it caught me completely off guard. As I told my husband recently with exasperation, “I want to be taken seriously, just not this seriously.” I was looking for reassurance not diagnosis; I should’ve called my mom.

The truth of the matter is, I am grateful that I will be getting an MRI, so I don’t have to spend vertigo-ridden mornings wondering if this is a normal symptom or if something is getting worse. In fact, I am very grateful to my doctor for taking me seriously the first time — for meeting me with concern and legitimizing what I’m feeling — rather than convincing me it’s all in my head. The reality is, with a brain tumor, it’s already all in your head! I think the thing that threw me was how quickly that familiar, yet forgotten, pit that I’d felt for so many years returned to my stomach. I felt the knots deep in my belly grab on and twist.

When I first got the doctors response, I rapidly started to text my husband that the doctor wants me to get an MRI and I spewed out a stream of consciousness message that, “I really don’t want to do it and I’m not going to get more surgery anyway so what is the point.” I had been a fitness instructor and fairly athletic before my 10 brain surgeries and it’s taken me years to get back to a place where I feel strong again; I didn’t want to go back to a place where I felt I had to rebuild and relearn my body. With a bark bigger than my bite, I kept declaring in those rapid-fire texts what I would and would not do if the MRI showed growth. But he knew and I knew that I’d likely do whatever the doctors advise me.

I sat in that fear for a while the other day. Eventually though, I got a work email with things I had to handle, and I fell deep into the distraction of a challenging job. In that space of distraction, I realized that the MRI is just the MRI. The MRI is not the tumor. The MRI is not a ticket to surgery. The MRI is not an indication of tumor growth. The MRI is just the MRI. Frankly, at this point, the only thing the MRI truly stands for is that the doctor took me seriously the first time, and that demonstrates power on both sides. So, I’m not going to let the MRI be everything that my years of dealing with a brain tumor have been, and I’m just going to let the MRI be the MRI. And with that, I’m going to try hard not to get stuck in that space of fear.

There’s still a pit in my stomach and I’m going to let it stay there for the time being. It’s not the kind of knotted up feeling that you can massage your way through or breathe deeply for anyway. It’s a deep ache that reminds you of a suffering that was unique to you and your family but that also reminds you of your resilience. I will not focus on that pit in my stomach, I will not indulge that pit. I will just note that it is there, that it can do me no harm and I will continue forward, present in this moment of my life, building strength in this body that carries me, because it is me.

Fingers crossed for a stable MRI.

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