Age now: 26 (27 on June 8th)
Age of diagnosis: 13
This photo is after a shunt placement and left acoustic neuroma debulk.
The tumor has since grown in again in a short amount of time.
I started out with pea sized bilateral acoustic neuromas and one other tumor. I had a lesion removed from my scalp which lead to an mri to show the tumors inside. I have numerous tumors throughout my body so being specific isn’t easy to do. It didn’t start to develop into an issue and show symptoms until my early 20s. I was on avastin for 3.5 years before I had a debulk on each side. April and July 2017. I thought things were fine and the surgeries went well. No major symptoms from surgery to talk about. I went deaf about 6 months after the surgeries and December 2019 I started to get very sick every single morning due to CSF and intracranial pressure which brought me to my surgery for shunt placement and a tumor resection on the left side in February 2019. My tumor is still growing at a faster than preferred pace and that is why my doctors are now considering radiation for my tumors. I can’t chew or swallow well now and I have a left side facial paralysis as a result. Just before this surgery I could drive and live care free without nf2 interfering with my life and that is why I am seeking a cure for nf2 through nf2 biosolutions and gene therapy. It could very well be my only hope.
I don’t honestly know how I manage because there are so many occasions that i just want to give up. The hope for a better tomorrow is probably the main thing that keeps me going and gives me strength to keep up the fight. Some days I wonder what am I fighting for? Every turn is another loss for myself if you ask me.. I realize that people have lost a lot more than me and that will continue to be the case unless I get up and spread awareness and make people see this. While it may make me uncomfortable, it’s even more uncomfortable having no proper treatment or cure for my condition, and that is what encouraged me to share my story. I wanted to be one of the good outcomes pretty bad. I thought, if only the good outcomes are sharing their story, there will be no known need for a fix/treatment/cure. I can’t say I’m a good or a terrible outcome. I’m more in the middle and the worst has yet to come for me. I still have a chance, and I will have an even better chance with a new therapy, like gene therapy, to help me while I’m picking up the pieces nf2 has left me with.