fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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No Laughing Matter

 
“You need a fifth surgery,” the maxillofacial surgeon tells me. “Heterotopic bone is again growing over your prosthetic device.”

For eight years I have endured intense pain in my left jaw. While having four surgeries, I have also undergone Botox treatment, acupuncture and physical therapy; taken a variety of medications prescribed by pain doctors, neurologists and my primary care physician; and used specially made creams, ice and heat on the affected area. Nothing has worked.

And now I face surgery number five.

It would be a more intense version of surgery number four, my doctor explains: He would remove the prosthetic, clean out the bone, take fat from my stomach to make a cushion in my head, then replace the prosthetic. This time, he would cut more deeply, trying to make a larger separation between the bone roots to prevent a reconnection of the bone. He would insert a custom-made device, he says, jokingly adding–in an attempt to reduce my stress–that “if anyone ever accuses you of having a big mouth, just send them to me!” He might also bring in a radiation oncologist within twenty-four hours of the surgery to zap my head in two spots, as a way to prevent a reoccurrence of the bone growth.

I sit in my surgeon’s office, a place that has become all too familiar to me. I struggle to open my mouth so he can measure its width, but I am unable to do so with any degree of success. I feel him hold my hand and hear his words of sympathy for my ongoing nightmare.

And I cry. I shed tears because my beloved dad, who has come to every previous appointment with me, no longer sits in the visitor’s chair in the exam room; he died on November 1. I shed tears because I am tired of living with chronic pain–of having to choose which activities to do and which to eliminate on a daily basis because I need my energy to cope with spasms in my head, constant headaches, and burning that emanates from the site of the previous surgeries. I shed tears because I feel hopeless, as if each surgery pulls me deeper into the quicksand; I fear the fifth might pull me under. And I shed tears at my untenable choice: live with the pain or risk a fifth surgery.

I do not know what to do.

Ronna Edelstein
Pittsburgh, Pennsylvania

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Comments

1 thought on “No Laughing Matter”

  1. I feel I need to comment but I have no wise words and no words of comfort to offer. I am feeling I have nothing to offer. But I cannot move on, having read about your pain, your loss of your father and your current loss of hope without saying I am feeling really sad and touched by your situation. All I can do is wish you strength and endurance and the return of hope. Sincere best wishes.

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