Today we get to hear from Patti Okai who has a harrowing story of how she acquired Ataxia via a brain tumour.
Hi. I’m Patti Okai.
On Valentine’s Day of 2018, I was diagnosed with medulloblastoma. I had gone to my primary doctor about my symptoms.
I was getting sick every morning, I was pretty unsteady, and I was having vision problems. I heavily smoked weed at that time because it helped with my nausea, kept my appetite, and was a rebellious 20-year-old. The doctors thought I had an ulcer so they set up an appointment for me to see a GI doctor.
The soonest I could see them was a couple of months later. By then, my gait was very off. It was like my body was throwing itself on the ground. When he could see me it was clear an ulcer was not the culprit.
My parents thought maybe I had MS or was bulimic. By then, I was losing weight. Fast. I was very pale. I still went to the GI doctor because I didn’t know what to do. He asked me a bunch of questions and examines my walk. He said that I did not have the normal gait of a 20-year-old. He then set up an appointment for me to see a neurologist (which I didn’t get to).
My parents were out for Valentine’s dinner. They were having hibachi food when I got a call on my cell. It was the GI doctor calling me from his personal phone. He said I should go to the ER. He’d really been thinking about me. I immediately called my mom and asked her to take me. She said she would and she was on her way. We went to the hospital and they saw me right away even though it was the middle of the flu season. They gave me a CT scan. I joked with my mom that they were gonna come back and tell me I have cancer.
A few minutes later, the doctor comes back in very solemn-looking. They said that they were worried about a golf ball-sized mass in my brain. The nurse told me it was ok to be sad. She just cried in the other room. I had my dad, brother, and boyfriend at the time to come see me. I was then transported to BJC via ambulance and 2 days later I had surgery. I had posterior fossa syndrome from it.
My tumor was extremely aggressive but they got it all. I acquired Ataxia from it. Immediately after surgery, I couldn’t walk. My cancer was considered pediatric even though I was 20.
Thanks, Patti Okai for taking the time (and mustering the courage) to share your story with us!
If you have an acquired Ataxia or want to know more, join my friend Krystal Schulze in her Facebook Group Acquired Ataxian Survivor Support Group.