Just before Christmas, I was diagnosed with glioma, located near my brain stem. I was scheduled for brain surgery five days later.
Brain surgery to biopsy an “inoperable” tumor near my brain stem was not my idea of a fun way to spend my holiday.
But I kept my focus positive and looked at the realities:
I’d had an almost identical anomaly occur in the same location in my brain fifteen years earlier, and it had been successfully treated.
I suspected that I didn’t have glioma, in spite of the diagnosis, and, instead, a demyelinating lesion of the brain, as I’d had in 1999–and I’d been living with undiagnosed MS in the fifteen-year interim.
I have a strong faith. Either God was who I believe him to be in moments like this, or my faith was useless.
I was hospitalized twice–each time for about three days–the first just prior to Christmas, and the second over the New Year. And each time I experienced PTSD triggers related to my first hospitalization: smell and sound memories, fear of the dark (being alone at night, really), and fear of MRIs (that claustrophobic feeling of being stuffed into a tube).
So what did I do to prepare? Here are a few tips.
I prepared in advance. Most hospitals use the same brand of hand soap in their patient bathrooms. The smell is hugely triggering, so I brought my own soap from home. And a family member stayed in my room with me each night, which was hugely helpful. Most of my family understand PTSD and my specific medical triggers because I’ve helped educate them.
I informed my medical providers and asked for simple accommodations. I let the staff know that like many patients with past medical trauma, I had triggers.They were extremely compassionate and responsive.AndI asked for premedication for my MRIs (several of them). Why experience anxiety, when medication can help alleviate the stress? It’s hard enough for me to lie still in that tube and not fixate on my itchy nose or hysterical bladder.
I focused on my source of strength. For me, that’s my God and my faith. I found that I was granted enormous peace during this medical experience.
I’m still awaiting final biopsy results. I don’t believe I have a glioma–not because of blind faith, but because increasing medical evidence seems to be leaning in another direction.
What about you? Have you experienced medical trauma and struggle with triggers? How do you handle them?
Oh yeah, and my incision and craniotomy are behind my ear.