Life After a Pituitary Tumor

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About a year ago I had a headache that wouldn’t go away. It lasted days and was one of the worst pains I had ever experienced in my life. I had started a new job a few months before this started and I didn’t want to miss any time at work. But the headache continued and grew with intensity. I finally decided to visit the neurologist after a 4 day migraine and ultimately discovered I had a pituitary tumor.

It was non-cancerous; most pituitary tumors are benign. However, it was already quite large and considered a macroadenoma at the point it was discovered. My excruciating headache felt like there was a stabbing/throbbing sensation occurring right behind my eyeball. At times I felt as if I could literally dig it out if I had access to that area of my brain. It turns out that this is a common symptom of a pituitary tumor bleed called pituitary apoplexy.

Next month will be a year since my transsphenoidal surgery for pituitary tumor removal.

“The pituitary gland is often reached through one of the nostrils.  If this cannot be done, an incision may be made in the upper gum, under the top lip.  The surgeon then would use x-ray and an endoscope to guide his way to the tumor.

A small piece of bone is removed to expose the pituitary gland and the tumor.  Using a microscope to guide his way, the surgeon removes the tumor.  If it is too large or stuck to important structures, the entire tumor may not be removed.

Now every minor health ailment is a reminder of all I’ve been through. Every time I think about what could happen if the next time it was cancer if the next time it couldn’t be corrected with a surgery. I’ve become one of those patients who is too fearful of the diagnosis to even take the tests.

I’m taking care of myself and if something merits medical attention I do take the time to get it checked out. However, I sometimes get flashbacks of the horrible moments after my surgery. I see the hallucinations and vivid dreams I had when I was hospitalized. I feel the deep sinking feeling I had in my gut when I had my lumbar drain and the nurses informed me not to stand up because “your brain could shoot right out the bottom of your skull.”

Most days I don’t even think about it, but there are some moments when it all floods back. I guess this is the new normal for me.

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Comments

  1. Kirsten says

    I was diagnosed with a microadenoma of my pituitary a few years ago. Two years ago I had a follow up MRI that showed it had grown slightly. I went to the endocrinologist who put me on two different types of pills to try and shrink it… but the side effects of the pills (headache, general aching and stiffness) made it almost impossible for me to work… if I took it during the day, the headache and stiffness didn’t let me sleep for my nightshift that night, if I took it at night, the headache and stiffness bothered me while I was at work.

    The tumor’s side effects are that I have headaches right behind my eye….. and they’re miserable! AND that it threw me into menopause at the ripe old age of 26….. raising my hormone levels so much that my body thinks I’m 15 years older than I am. I probably would have been diagnosed earlier if we didn’t think THAT was the result of a depo provera shot I got.

    I’ve considered the surgery. But the thought of it scares me to death. Maybe I can tolerate headaches and muscle stiffness and shrink it with pills.

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