My Story
Steve Cox
I had symptoms for more than a year. It started with spontaneous bouts of
hiccups. Whenever I ate or drank I would start hiccupping.
I was forced to stop eating or drinking until they passed. Sometimes the hiccups would start for no apparent reason. If I rolled
over in bed while sleeping I would be woken up by hick ups. They came any
time. Last August (2003) I finally went to see my doctor. He sent me to a gastroenterologist because he thought it might be stomach related.
It took a month or so to get the appointment and the gastroenterologist
treated me for acid reflux for another couple of months. In the meantime I was traveling around the world on business and burning up more time. Around Thanksgiving I started to have difficulty swallowing. My ears started to ring and I had this strange sensation that felt like
my head was in a bucket of ice water. Headaches started also. I went back to
my primary doctor in late January and told him of the new symptoms. By now I suspected that something was seriously wrong inside my head, but I didn't
want to think tumor. My wife and I actually joked about it being a tumor. My doctor finally sent me to a neurologist on the Monday before super bowl weekend. On Wednesday that week I had an MRI. The neurologist called me right away with news that they had found an egg-sized tumor attached to my brain stem and in the forth ventricle. That Friday I saw a neuro surgeon at Lahey Clinic in Massachusetts. The doctor couldn't schedule surgery for another 3-4 weeks.
He said nothing would happen to me in those 3-4 weeks. He was very wrong. My headaches got worse. I had vertigo and difficulty walking. I lost my ability to swallow and could only poor soup down my throat. Something went into my lungs that caused pneumonia. The hiccups got so bad that at one point I hiccupped every 3 seconds all day and all night until a medication
became effective. I started losing 2-3 pounds a day and I am (was) a jogger with virtually no body fat. I was convinced that I was going to die within a few weeks and surgery was the only hope. I was circling the drain pretty fast. Just before surgery, I just about couldn't move. Walking was nearly impossible. I was semi-lucid most of the time and beyond the ability to take care of myself. My wife, Barbara, literally kept me alive by conferring with doctors and pharmacists and managing the medications. We had our will updated and we prepared for the worst-case scenario.
On February 24, 2004, I had nine hours of brain surgery with complete resection of a malignant ependymoma. It measured 4 X 3 X 2.5 cm. The recovery was not much fun. Among other things my brain could no longer control my blood pressure. If I simply sat up in bed I would pass out. This lasted for a few weeks. I still couldn't swallow and wasn't given any nourishment for more than a week. I had lost a total of 40 pounds. They eventually inserted a feeding tube in my belly just above my
belly button. While doing this they discovered that my stomach
was full of ulcers caused by medications, so I couldn't be feed for a few
more days until the ulcers cleared up. The nerves that controlled my tongue were damaged and my speech was nearly unintelligible. I could not walk at all due to a combination of factors including low blood pressure, vertigo, loss of motor control and sensory function on my entire right side, and loss of balance control. It took several weeks of therapy before I could walk with only a cane. Speech therapy helped me learn to talk again. Swallowing came back slowly and I was put on a liquid diet for a while.
Today, several months post surgery, I can walk with some difficulty, my speech is intelligible, but not perfect. I have regained 90% of my swallowing capability. My ears ring constantly, and when I stand up I am nauseous and have trouble balancing. My entire right side is numb when I remain still and tingles painfully when I move. Still, everyday is a bonus after having danced with the grim reaper.
That's my story
This is the MRI showing my tumor
