Brain Tumor Awareness Month: A survivor's testimony

May 3, 2024

Alicia Gaddy’s journey as the CCBHC Program Director at Infinity Health is marked by resilience, passion, and a deeply personal commitment to the cause of Brain Tumor Awareness. Not just a leader in her field, Alicia brings to her role a unique perspective and determination, born from her own battle with a brain tumor. Her story is not just one of survival but of triumph, inspiring all those around her to engage more profoundly with the importance of Brain Tumor Awareness Month.

Alicia Gaddy, CCBHC Program Director

“When I was in my teens, I started to have headaches almost on a daily basis. As I started getting older, those headaches continued but migraines seemed to take over. When I was 16, I had my first seizure. If you’ve ever had a seizure, you know it’s sudden and unexpected but for a split second, you know something is wrong but it’s too late. It was absolutely terrifying and I had no idea what just happened. I went to numerous doctors diagnosing me with tension headaches, cluster headaches, and migraine headaches and prescribing various medications to no avail. I went to chiropractors, had acupuncture, CAT scans, MRI’s and EEG tests. I knew something was wrong but none of these tests showed an explanation. The daily headaches and frequent migraines continued with seizures happening about once every 3-6 months.

I went on through my 20’s with these symptoms and seemed to normalize the pain. When I was in my early 30’s, these symptoms got worse, much, much worse. I started getting nauseous, my vision and hearing was off, my cognitive abilities suffered, which was very difficult as I was going to college during this time, working full time and trying to be a good mother. My symptoms continued to worsen. I started to have horrific pain in the right side of my face, along with the worst migraines I have ever had. I lost complete vision and hearing on my right side. I was sobbing nightly in utter agony, pleading to God to please take this pain away! I was taken to the ER where I was given the largest dose of Fentanyl and it didn’t touch the pain. No other tests were done. They diagnosed me with possible Trigeminal Neuralgia or Multiple Sclerosis. I was sent home and received a call the next day to tell me “I’m sorry, we can’t help you here.” I was devastated and just wanted to give up on life but I wanted to live too! I knew something was wrong and nobody was listening.

I decided I would try one more doctor. Finally someone took me serious and sent a referral to a neurologist. I did one more CAT scan and MRI and went home. In December 2017, I got a call. They said “We’re sorry to tell you this…you have a brain tumor and we need you to come in to discuss options.” WHAT!? ME? I would have never thought I would be diagnosed with a benign Meningioma Brain Tumor. Nobody does. This explained everything…but now what!? On February 1st 2018, I went in for a craniotomy. I had never been so terrified in my life. I was scared for my son, that I wouldn’t wake up or that I would and be someone neither of us would recognize. I took the risk and I woke up! My hearing and vision had returned! My neurosurgeon was the absolute best and removed this giant tumor from my right frontal lobe that had been growing for decades. He saved my life and I thank God for him every day.

I still have headaches, fatigue, very few migraines and was left without taste or smell due to damage to my olfactory nerve, and a scar to remind me that I AM A SURVIVOR! And by the grace of God, I am alive and functioning! I continue to have follow up MRI’s. I take PRN and monthly injections to keep the migraines at bay and will take that over the excruciating pain and deep depression any day. I am not alone in this fight though and I ask for your prayers, your patience and your support for all brain tumor survivors, those newly diagnosed and those currently going through this battle! Brain trauma is very real and this fight is never-ending, recovery is never-ending. I ask that you please show your support and WEAR GRAY IN MAY!

>>> Do not normalize how you are feeling. Please remember the importance of paying attention to your body and seeking medical attention when something feels off.”