Acoustic Neuroma Warrior

In March 2021, I was diagnosed with a rare brain tumor (Acoustic Neuroma – Vestibular Schwannoma) pressing against my brain stem. I was referred to Weill Cornell Brain and Spine Center, New York Presbyterian Hospital in NYC, to discuss surgical and radiation options. 

On January 11, 2022, I underwent a 12-hour, complex craniotomy-cranioplasty brain surgery to remove the tumor. Although I got through the surgery relatively well, unfortunately, they were unable to remove the entire tumor. 

Four days after being discharged, I developed a cerebral spinal fluid leak paired with a serious brain infection and was readmitted for 2 weeks, followed by 3 additional weeks of home antibiotic injections twice daily. 

The complex surgery, remaining brain tumor, effects of the infection, and post-op complications have left me with vestibular and central nervous system damage. My team advised me that recovery from such a surgery and infection can take years sometimes, and I likely will not recover completely. I am almost 2 years post-op. I try to live my life as normally as possible and keep a positive attitude (which is really everything). I have to walk through life a lot differently now, but I am thankful every day that I am still here, fighting the symptoms of still having a tumor, the roadblocks of recovery, and the anticipation of radiation as I still have a tumor that my team says will eventually start growing again. Overall, I am positive, happy, and will fight whatever fight I still have ahead of me!

TAGGED WITH: acoustic neuroma

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.