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What I wish I'd known about my rare diagnosis

 I have a benign brain tumor which is called an acoustic neuroma, or vestibular schwannoma if you want to be fancy. It's a rare tumor.  One person in 100,000 will be diagnosed with an acoustic neuroma in any given year.  Picture the biggest college football stadium in the US.  See all those people?  Just will be the unlucky one diagnosed with an acoustic neuroma.


It was 2010 when I was diagnosed and I was thirty-three years old.  I had been so sick - incredibly fatigued, lightheaded with painful headaches and pressure in my head - that I was happy to have found a reason for my suffering.  The only problem is that while we found something that definitely needed treatment, the tumor was not making me sick. 


Then neurosurgeons told me that my symptoms were not caused by the acoustic neuroma.  They said the only symptoms usually caused by an acoustic neuroma are loss of hearing and dizziness.  Wanting to believe that we had discovered what was wrong with me I told myself that my lightheadedness must have actually been dizziness and that my headaches weren’t so bad.  I so badly wanted to focus on living my life - raising my young family and advancing my career - that I stopped questioning why I was sick and denied how I really felt.


What I wish I’d known then is that if your rare disease doesn’t explain your symptoms then there is probably something else going on. It wasn’t until six years after the diagnosis of my brain tumor that I realized there might be another explanation for my symptoms.  For Christmas 2016 my parents gave me a Fitbit, and I soon noticed that my heart rate was often accelerated.  I engaged in some internet research and began my long path to a diagnosis with Postural Orthostatic Tachycardia Syndrome (“POTS”).  


I wish I had not believed that the brain tumor was the only thing wrong with me for so many years. I wonder how my life and career would have played out if I kept pushing for an accurate diagnosis instead of pretending that nothing was wrong.  The moral of the story is: don’t assume that there is only one thing wrong with you.  If your symptoms haven’t been explained, keep looking.  You owe it to yourself.  

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