My Acoustic Neuroma Story Battling a Rare Brain Tumor

The story of Shelly

My name is Shelly Knowlton and I have a rare disease. I had a rare brain tumor an Acoustic Neuroma that affects 1 in 100,000 in the US. Many people go undiagnosed for years suffering with hearing loss, balance/vertigo issues, migraines, fatigue and many other health issues before they know it’s a brain tumor. These tumors grow in the inner ear canal on your vestibular and hearing nerve. They are near the facial nerve as well and can create tons of issues if the facial nerve is damaged. These tumors are also near the brain stem and can cause life threatening situations and be fatal if not treated. It stopped my life in its tracks last April just when I thought life was getting back to normal for me after dealing with years of chronic back pain. I struggled hard from April till September when I had it removed. Though surgery removed the tumor it has left me worse than I was before. I lost my hearing in my left ear and now have nonstop ringing in my ear called Tinnitus. I have many additional issues from the tumor and surgery some of the big ones are daily chronic migraines, pain in my head and neck from surgery, balance issues/vertigo, memory loss, brain fog and fatigue. Acoustic Neuromas are highly under researched. Many doctors have either never heard of them or never seen a case, that’s how rare they are. We need to demand better with more research and awareness to save lives. With earlier detection patients could have the chance to save their hearing and prevent the tumor from doing major damage that can not be reversed. The patients that have them deal with a life time of issues even if the tumor is removed. We have to learn to accept The New Normal which is very hard with so much suffering. I have made it my mission after being one of those to suffer to be an advocate and voice for my AN Warriors across the world. I hope that as I progress and get better it will allow me to serve my purpose in life and help others with their chronic illnesses in much bigger ways. But right now I can do this. I can spread the word that today is Rare Disease Day. I ask you to spread the word too.

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