Can you guess the year? “Ordinary People” won the Academy Award for Best Picture, the Philadelphia Phillies defeated the Kansas City Royals in the World Series, and “Call Me” by Blondie topped the Billboard Top 40 charts. And that same year I was diagnosed and treated for a benign pituitary tumor.
It all started during my last annual check-up with my pediatrician before heading off to “adulthood” and college in the fall. My mother noted to the doctor that the frequent mild headaches, which had plagued me since junior high school, had escalated to severe migraines by my junior year of high school. The doctor suggested that just to be safe, I go see a neurologist before college started. The neurologist examined me, thought things seemed okay, but recommended an EEG and CT scan as a precaution. After those tests, we were told to call for the results on the upcoming Thursday.
That Thursday, my parents picked me up from my summer job, and we headed down to visit my grandparents in Virginia for the July 4th weekend and my 18th birthday. When my Dad called me at work to let me know they were on their way, I casually asked if he had heard my test results. He said they would tell me about it in the car. After we rode in virtual silence for half an hour, I began to suspect something was up. I asked again and was told to my complete shock that the CT scan had revealed an abnormality in my brain area, possibly a tumor or lesion of some sort. That was all the information that had been provided to my parents, and those were the words we collectively chewed on for the three-day holiday weekend. I remember the very first thing I did upon reaching my grandparents’ house was to run and get the dictionary to see exactly what a brain “lesion” was.
Upon returning to Baltimore, we headed to an appointment on Monday morning with a neurosurgeon, who was going to explain everything to us. He informed us that I had a tumor of some sort on my pituitary gland, and I checked into Johns Hopkins Hospital for five days of tests. On my very first night there around 2 a.m., a resident woke me for a physical exam, and he explained that they suspected I had a benign pituitary adenoma. That preliminary diagnosis held up through all of the tests, including one that showed a loss of peripheral vision I had not even noticed as a result of the tumor pressing upon my optic nerve. I went back to Hopkins one week later for the removal of the tumor. My parents had spent most of July researching the right doctor to perform the surgery, and of the three most experienced neurosurgeons in the country in this procedure, one was right in our backyard at Johns Hopkins.
This time my stay at Hopkins was for 10 days with most of the time spent recuperating from the procedure. I had transsphenoidal removal of the tumor, which meant the neurosurgeon cut through my gum line above my top front two teeth, went up through my nose and into the sinus cavity. There, he drilled through the sinus cavity wall and was able to reach the tumor in the pituitary gland and scoop it out. On his way out, he plugged the hole in the wall with muscle he removed from my thigh, straightened my deviated septum as a bonus (and ended 6 years of winter nosebleeds and annual cauterizations), and packed my nose for healing.
Upon waking after surgery, I was surprised at the chunk of muscle missing from my thigh (I had not been told that was coming) and upset that they had chosen my right leg, which I favored in sports. Strangely, the most difficult part of my recuperation was getting back on my feet and walking again after the muscle removal, though it didn’t affect my sports life. It made for some darn good excuses plus I milked that scar pretty well over the years. I also remember that the Sudafed I was on for my congested and packed nose made me so spacey and out of it that when a hospital volunteer stopped by to ask if I wanted to play with blocks, I begged the doctor to take me off the drug.
During my recovery period, friends came by the hospital to visit, including several who juggled and would put on shows in my room. My neurosurgeon asked one of them if he would teach him how to juggle. My friend offered to in exchange for being taught brain surgery! When I was finally able to go home, nothing felt better for my still congested nose than the overwhelming heat and humidity of Baltimore in August. I recovered well and by September, I was finally off to start my freshman year of college. That fall, tests indicated that my prolactin level, which had reached 4000 before surgery (normal for a male is 1-15), had only dropped to 2000 even though the surgical procedure had removed my prolactin-secreting pituitary adenoma. Therefore, I was placed on bromocriptine, a dopamine agonist, which very quickly reduced my levels to normal. Follow-up CT scans were not able to tell if all of the tumor was removed because the mass of muscle in my head obscured the tumor location. However, my peripheral vision loss essentially disappeared and my prolactin levels remained normal. By the end of my freshman year, I had suffered the reverse of the Freshman 15, as I lost the 20 pounds I had artificially gained during high school as a result of the tumor. Finally, the migraine headaches, which had prompted everything, disappeared after the surgery in spite of the doctors insisting the migraines had not been caused by the tumor.
That year was 1980. I am now 41 years old, married with four healthy children, and doing well. I am extremely lucky that the tumor did no irreversible damage and while I will have to remain on medication for the rest of my life, my prolactin levels continue to be normal. I haven’t had a migraine headache (or nosebleed!) since high school.
A lot has changed since my diagnosis that has made the treatment for these tumors even easier today. I was one of the earlier patients to receive both the transsphenoidal surgery and bromocriptine treatment. Not only did they stop using muscle in the sinus cavity wall shortly after my surgery, they now routinely treat my type of tumor solely with dopamine agonist medication (dostinex is now the drug of choice) instead of surgery. My 10-day stay at Johns Hopkins is practically unheard of today for nearly any surgery. I switched from CT scans to the no-radiation MRI years ago. The peripheral vision test I take annually has gone from the test administrator mechanically clanking the table to a computerized system in which the electronic buzzer enables the machine to give the test, analyze my accuracy, and plot my vision fields.
Other things have changed as well. My juggling friends are now teaching their kids to juggle, and it’s time for me to make my reservations for my 20th college reunion. But the best change of all is that while I still see Dr. Neil Miller my neuro-ophthalmologist at Hopkins every year, I’m just a boring patient to him these days. I thank my lucky stars and the excellent medical treatment I received over the years.
Written by Michael Greenspun, survivor. Former CBTF Board member and currently a Community Representative.
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