May 2013 I was driving back from my sister’s house in Chicago and my tongue felt numb. After I got home, I didn’t think anything of it until later in the week when it didn’t go away. The whole side of my face was numb as if I had just left the dentist. I went to see my doctor who sent me to a neurologist whom I had known for some time. We thought maybe it was a nerve or my TMJ causing issues.
May 28, 2013 is when I found out I had a brain tumor by a nurse who mentioned it while reading my report to me. I said, “Wait, What? A tumor?” I was shocked! The nurse was still reading the report but I didn’t hear much of it. I asked to speak with the neurologist and was sort of disappointed that she did not call to give me this news. She wasn’t available. I asked the nurse to have her call me which she never did.
It would be 3 weeks before I could see the neurosurgeon. In the meantime, with no knowledge of what this was, I thought it was a death sentence. Finally, I had my appointment with Dr. Andrew Tsung. Years before, when he was a resident, we worked on the Neurosurgery Residency website together. So I knew him and how brilliant he was from listening to the other physicians that I worked with at OSF. I felt comfortable with him and trusted him. We discussed my tumor.
We looked at the MRI and although it looks like the size of a penny, perfectly round, he described it as small. Of course if it’s in your head, it seems much bigger. He pointed to my head where it was and he said what I wish I heard a month before:
“You wouldn’t believe how many people are walking around with these things and don’t know. They don’t cause problems and we leave them alone until they do.”
He went on to say that it was nothing to worry about and it was very small. Although the word itself is scary, the tumor is harmless. He told me to follow up each year with an MRI to make sure it doesn’t grow. I thought about it everyday but my follow up MRI said it was the exact same size. In fact, the neuroradiologist described it as “tiny”. The numbness in my face is a nerve. And I’m lucky there too because it’s not painful at all, just annoying when I don’t take my meds.
I’m still not comfortable telling people about my tumor because it sounds so terrible even after explaining it’s not a big deal.
I was asked to tell my story because there are a lot of people out there like me “walking around with these things” and once you find out, you may react the way I did with panic and doom. Many tumors are actually no big deal. I am very thankful that mine is just that. I still take it seriously and will go for my follow ups but feel much better about my future. This was a wakeup call too to take care of myself and to try to help and support others with brain tumors. That’s why I like supporting the Mark Linder Walk for the Mind.
I would also like to remind the medical community, we as patients sometimes don’t know. Please be considerate to your patients and make sure all their questions have been answered. Don’t leave them to self-diagnose on the internet and not find good information. It would have taken 10 minutes to explain my tumor to me. Good customer services works in any industry.