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How many times have you been told you’re crazy? Getting diagnosed with Ehlers-Danlos syndrome is difficult enough, but EDS brings along a bunch of other issues that can make your life hell.
Throughout most of my life I was always told nothing was wrong with me when I had an injury. Something would hurt, I would go to the doctor, they would order imaging, and everything would come back normal. This was the case when I started having severe migraines and facial numbness. I went to three different doctors. The first said it was anxiety, that there was nothing they could do and that they wouldn’t see me again. So, I found another practice and got a second opinion. That doctor said the first was correct and that people in her waiting room were dying and I was wasting her time. She berated me for 45 minutes and I left in tears.
I made it back to my amazing pcp who told me to go to Facebook and find out who people were seeing. This led me to the Georgetown Medstar Neurosurgery department. I was diagnosed with two herniated discs in my neck and ultimately had surgery to fix it. Both initial doctors had missed it. Neither were willing to even do any imaging but I knew something wasnt right in my gut, so I persisted. I have been told that I was doctor shopping and eventually someone would find something wrong, but that it wouldn’t be accurate and I would get treatment for something “made up”. I wish I could send the images to that doctor to prove to her she was wrong, and could have caused me more damage, but I’ve moved on.
Jump to two years later, I was doing ok most of that time but started getting migraines and vertigo when I turned my head side to side. I went back to the doctor in DC, feeling so lucky that I had someone to go to that would treat me with respect and not tell me that I’m crazy. I didn’t expect the diagnosis of Chiari Malformation. See all my previous imaging from two years prior never showed any signs of Chiari. As it turned out the rotational CT didn’t necessarily show it either. Looking from the side of my head I didn’t have the normal drop of the cerebellum tonsils. When my head turned however, c1 and c2 were so hypermobile they were over rotating 80%! I was like an owl turning my head all around! When they over-rotated, the foramen magnum was filled up with the tonsils. I was in shock. It was the last diagnosis I ever expected to receive. It took me a while to fully process the situation and I wound up having surgery a few months later.
It wasn’t an easy surgery and I can’t say I’m 100% better. Most of my symptoms are gone but I still live with pain and headaches daily. I’ve had other issues since then that led to surgery too. What I try to remember everyday though is this: I’m better off now than I was before, but most of all I trusted my own instincts and never let those that would knock me down win. Find your community, help, love, and respect each other and never ever give up on yourself. #ZebraStrongTags: chiari, chiari malformation, Diagnosis Journey, hEDS, hypermobile EDS, hypermobility
Categorized in: Breaking Down Barriers Stories