P.S. 8 What symptoms led to my diagnosis?

I'm in an online support group for adults with ependymomas (the rare brain tumor I had), and there's been a lot of talk lately about symptoms people had before diagnosis.

One person had ongoing hiccoughs so badly that he couldn't eat and finally had to go to the ermergency room, where he was diagnosed.  In fact, quite a few folks were diagnosed in the emergency room, gnerally after a fall or a seizure or a migraine.

I didn't have hiccoghs, but for a long time I had a lot of symptoms that were similar to others (headaches, balance issues, fatigue, thyroid problems.) My surgeon guessed that my ependymoma started in utero. I started seeing doctors for symptoms when I was twelve. The ependymoma was diagnosed when I was 43.

In elementary school I first noticed slight balance issues that seemed a little weird, especially since in general I thought I was a strong athlete. In first grade, I thought of myself as really good at kickball, but one time I sprained an ankle when running off the end of a sidewalk. This seemed strange to me, that a sidewalk might trip me up: my first lesson in humility.

In my teens, I blacked out and fainted from time to time. My junior high basketball teammate nicknamed me "Casper" because I turned so white. I had slight balance problems, so that getting my high school skinny self to rebound was unsuccessful. My coach would yell, "Stick your butt out!" and I would yell back, "Coach, I ain't got no butt!" This seemed to be elucidating the obvious. I was an athlete and was also unusually tall and thin, so my doctors and I thought my skinniness explained the fainting. I was much stronger on my right side than on my left, now I know a symptom of ependymomas. In soccer, I just stuck to the right side of the field so that I could use my more coordinated right side. Teenage-hood is also the era in which I started my period, a bizarre misery that causes all sorts of strange pains, so the relatively subtle symptoms from the ependymoma seemed to fit in.

Once  when my friend Kim and I spent the day at a racketball club, we played racketball and then alternated between the jacuzzi and the sauna. I got very weak and lost my vision for about half an hour. A nap and a coca-cola revived me.

In my senior year of high school, I had mono, which I now suspect was related to the fatigue from the tumor. I was often too tired to eat. I lost a lot of weight, and my dad thought I was anorexic, a diagnosis that I know parents often miss, so I give him a lot of credit for noticing. Anorexia was more likely than a brain tumor, but in this case inaccurate.


In my early twenties, I fainted while giving a talk to a large group of Southern Baptists. Though some people say that a large group of Southern Baptists is likely to make anyone faint, my dramatic collapse led to a CAT scan, which--acording to the doctor--didn't reveal any concern. The doctor said I would probably grow out of the fainting.

The year or two before diagnosis, now in my forties, I continued experiencing fatigue, and the headaches and dizziness got worse. I also found I often was slightly off-balance, grazing a door frame as I walked through or swaying slightly onto Ann's side of the sidewalk when we walked. I started having double vision when I biked and then having double-vision and the spins when I was teaching. I thought I was very clever to manage the double-vision by closing one eye. Ann was not so impressed and told me that I should see my doctor. My doctor told me to drink more water. Thinking I might be experiencing vision problems, as I was in my forties, I saw an opthamologist who also told me to drink more water.

Several months later, I emailed my doctor again, putting all of the symptoms together, and she ordered a CAT scan. My tumor was by this time the size of a plum, in my fourth ventrical and attached to my brainstem. I had neurosurgery within the month.

Doctors estimated that it would take me four to six weeks to recover from neurosurgery. I aksed my primary physician what "recover" meant in this context: Did it mean being able to go to the bathroom, being able to walk, or being able to hike. She replied that yes, it might mean any of these things. Or none of them. It took me a long time to recover from surgery. I was in rehab for three and a half weeks and then had home care until I could get to the hospital for rehab. Before the end of the year, I had learned to walk again with a cane. Facial nerves on the right side of my face also rejuvenated somewhat, so that I could close my right eye again and speak more clearly. Still, however, among other losses, I cannot whistle or drink out of a straw. These difficulties are more problematic than you might think.

Last December, two and a half years after surgery, an MRI revealed a second tumor, much smaller. Tumor boards debated what should be done: some thought surgery while others thought radiation and some thought both. I had six weeks of radiation. Radiation again jumbled my vision, affected my balance (and not in that good way), made a swath of my hair fall out, and made me very tired. In an especially cruel turn, I developed allergies to garlic, chocolate and cheddar.
I've learned to walk again, with a cane, though my balance is still pretty tipsy. I can see as long as I close one eye, so that the double vision doesn't distract me. Prism glasses help some. Fatigue is still an issue. I don't play basketball anymore. Now I'm a big fan.

My next MRI will be November 9, Veterans' Day. I'll let you know how it goes.

I"m hoping for the best--Mary