It began with brushing my teeth: Managing my life and facial pain before and after surgery for a brain tumor

Contributed by: Stephanie
Reviewed by: Evelyn Corsini, MSW, October 2010

Stephanie, a 48 year old wife and mother, is a native of Indiana.

Just over three years ago, I began to experience strange sensations: sudden, temporary, bursts of electrifying pain surging through the left side of my face and head, seemingly triggered by brushing my teeth with my electric toothbrush. The episodes of pain were completely unpredictable however, and did not occur every time I brushed my teeth. Logically, I thought there must be some correlation to the brush, thus I changed to a different brand. The pains continued to plague my tooth brushing routine, erratically and unpredictably. After switching to strictly manual, gentle tooth brushing, there appeared to be some measure of relief, until the bursts of pain began to strike several times per week, with no apparent provocation.

One evening, the surges of pain occurred in rapid, unrelenting succession, to such a debilitating degree that my husband drove me to the emergency room. I was preliminarily diagnosed with trigeminal neuralgia, and an MRI was ordered. Following the MRI, a neurologist diagnosed the existence of a brain tumor – a meningioma. I was advised that it was most likely non-cancerous, and certainly operable. An anti-convulsant medication was prescribed to alleviate the paraxysms (thunderbolt pains), which proved to work quite successfully.

After consulting with three neurosurgeons, and waiting one year following the diagnosis (as I was advised the meningioma was slow-growing), I underwent a craniotomy/tumor resection. The six hour surgery to remove the meningioma was declared a success. Surgically vanquishing the tumor, located in the posterior fossa region and impinging upon the trigeminal nerve, should theoretically have removed the pain-inducing agent which started the entire process. However, trauma to the trigeminal nerve during the surgery to remove the tumor ultimately resulted in an unremitting form of facial pain. The unilateral pain, restricted to the left side of my face, now combines sensations of burning, unpleasant tingling, constriction, along with some areas of complete numbness.

While I was advised by the neurosurgeons and neurologists that this pain was similar to what I had experienced before, there was a different cause; this was neuropathic pain, pain that was originating from the nerves themselves. This was a different form of facial pain than I had experienced prior to the surgery. I was told it would probably subside and resolve itself over time, but such has not been the case. I have been prescribed numerous medications, in varying combinations and levels of strength: oxcarbazine, carbamazepine, pregabalin, gabapentin, and others, but to no significant avail.

A very substantial, and life-altering level of pain persists two years later. My speech is labored. My activity level and overall enjoyment of life have been radically affected by the chronic pain. Great movies at home are a reasonable distraction. I also love baking for my family, which can be leisurely and engrossing. I try to manage as many household duties as possible, which can be welcome distractions from the pain. I also enjoy Internet research.

I am thoroughly grateful for a multitude of blessings, primarily just being here and having survived a brain tumor. I have a teenage son, whom I love with all my heart, and for whom I need to be here. While my beloved father passed away just months before the initial symptoms of trigeminal neuralgia, my beloved mother remains physically and emotionally strong. She is an extraordinary support. My husband has been utterly devoted and loyal. United, we work together to manage the pain which the medical community has yet to overcome.

My facial pain 3 years ago alerted me to the brain tumor.  Now my neuropathic pain is no longer an alert that something is wrong, but is a signal that is continually misfiring.

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