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READ MOREPublished on October 22, 2018 in Share Your Story
My symptoms began months prior to me finally seeking medical attention. They were minor, and I kept brushing them off as no big deal. I was working in the OR at the time and noticed things like small changes in my gait and trouble writing. I suffered personality changes as well and decided the OR wasn’t for me anymore. I went back to my old job as a correctional nurse and things seemed to be alright. I was having increased difficulty with walking and writing and if you knew me, my handwriting was some of the neatest you had ever seen and it was looking like chicken scratch. I also noticed that when I would turn my head to the side, up, or down that I would get extremely dizzy. I had an episode where I developed such intense vertigo that I fell out of my bed. I just brushed it off as a migraine. I finally went to my doctor and mentioned these symptoms and she was going to refer me to neurology.
We discovered that my referral was denied after I came home from my surgery claiming that it was unnecessary. Anyway, my husband would joke with me that I was beginning to walk like Jack Sparrow. He was being considered for a new management position that would move us two hours away from our current location. We had gone to look at apartments that day and while we were having lunch, I began to slur my words and fall asleep at the table. I had become increasingly tired and could never manage to get enough sleep. We went home and discussed that I needed to be seen by my doctor immediately. The next morning I went to work but was having to use the walls to hold myself up. I was sent home and decided that I would go to the ER.
I had lost nearly all motor function in my right arm, slurred my speech, couldn’t walk without supporting myself on objects, and the most embarrassing symptom was that I had become somewhat incontinent to my bladder. My husband had his final interview for his management position, so I had my retired father take me to the ER. After all, I was crazy and nothing was really wrong with me. The doctor came back in my room and showed me my scans. I had a golfball sized mass in my cerebellum. This could not be happening. So many things were going through my mind, but I didn’t have time to process them since I was trying to calm my parents down. I was transported via ambulance from Macon to Augusta and met my neurosurgeon many, many hours later. She explained my surgery and that I would be transported to yet another hospital where she could better approach my tumor.
My surgery was scheduled for the next morning and things could have not gone any better. I was discharged two days later and we found out on the ride home that my husband got the management position and we would start moving immediately. I had a couple of post op visits to my neurosurgeon in Augusta but wasn’t pleased the 4 hour drive from Columbus, so I decided to switch to a local neurosurgeon. I was still having symptoms, but the neurosurgeon in Augusta wasn’t very concerned. I brought up these symptoms to my new neurosurgeon and he immediately ordered a new set of scans. My worst fears were imagined when he told me the tumor was back. I was about to undergo all of this not even a year after my first surgery.
The first surgery was a breeze though, so I wasn’t too concerned. Surgery day finally arrived and I already knew the drill. After waking up from the surgery, I knew that this was much, much worse than my first surgery. My blood pressure was through the roof, I couldn’t stop vomiting, and I had developed the worst case of tinnitus. The nurses were unable to find a vein before surgery, after blowing several veins, and were required to start a central line. I was sick for days with uncontrolled high blood pressure and I’ve never been so miserable. But, my new neurosurgeon removed the entire tumor. He told me that part of the tumor was left during my first surgery, which is why it returned. He also told me that my original diagnosis of an astrocytoma was incorrect and the tumor was a hemangioblastoma.
I finally got to feeling like myself again and accepted a job to work for the army right before being taken back for surgery. All my post op scans have been great since then. My husband and I even welcomed a baby girl earlier this summer. I never knew how strong I was until I had no choice. I’m almost grateful for my tumor because it taught me to be so thankful for so many things. I’m so grateful to be alive and raise Kara with my husband but I hope to never undergo brain surgery again!
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.
