An ENT Appointment Leads to More Questions

My head has been feeling pretty good lately, thanks to the humidifier I recently started using. So, today I walked into my ENT appointment pretty optimistic. The nurse was actually the same person who administers my allergy shots, so it was nice seeing a friendly face. They did a scope, which is usually pretty anxiety-provoking for me due to a decade of experience with NJ tubes and deep suctioning. But thanks to numbing spray and my intense desire to not freak out this time, please, for the love of God, you don’t need to have an anxiety attack over a scope, I did just fine.

They didn’t find anything. I’m getting a CAT scan of my sinuses to be sure, but the doctor thinks I have a specific kind of a migraine that causes vertigo. If the scan doesn’t show anything, they’ll refer me to a neurologist who specializes in migraines, which is actually pretty ironic, given that I have two separate neurologist appointments scheduled for August: a Spinraza consultation (yes, I’m caving) and a general check-up with an SMA specialist.

I can feel myself shutting down. It’s not that I’m surprised; as optimistic as I was, I had a feeling they wouldn’t find anything. It’s my personal, and therefore probably inaccurate, theory that the humidifier cleared my sinuses up, resulting in the “clear drainage” the scope revealed, not enough to be a concern. But there is a sudden, inescapable heaviness in me, mirrored in the dark, heavy-bottomed clouds outside my window. Raindrops splatter against the glass, and I feel the reverberation in my body, lurking in the headache I can no longer refer to as a sinus headache.

I often wonder what it would feel like to take a medical professional at their word. I used to, back when my general practitioner was the pediatrician I had since birth. But something in me has lost that ability. I wish I could believe my doctors are doing everything they can to figure out what’s causing this, and I do, to a certain extent. I don’t pretend that my experiences generalize to the rest of the disabled population — there is so much ableism in the medical field — but so far, I have been blessed with kind, attentive doctors who genuinely do their best. But there is still fear.

There is always fear.

Brain cancer is so rare, my friend tells me. We joke that we always go through medical crises at the same time, but it’s actually the truth. Whenever we have an anxiety attack over something health-related, we find solace in each other. So, I try to listen. I try to take it to heart. Brain cancer is rare, I tell myself, and all my symptoms are easily attributable to something else, something that runs in my family — like migraines. Brain cancer is rare. We are all dying, but I’m not dead yet.

My therapist, who I see tomorrow for the first time in three weeks, would tell me that I can live comfortably, or perhaps uncomfortably, within the space that fear affords me. We can coexist, the fear and I. I don’t have to stop living just because I’m afraid. Or, put another way, I don’t get to shut down just because I’m afraid. It doesn’t work like that.

I can’t let it work like that.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.