“We can’t find anything wrong with you.” My stomach started churning. Those are the worst words you can hear in medicine when you know that something is clearly very wrong. My autonomic nervous system was on hyperdrive, giving me hot flashes where I’d turn flushed, and make my blood pressure and heart rate go all over the place. I wasn’t able to sit up without feeling like I was being crushed to the ground, and this reputable hospital is telling me there’s nothing they can find except severe POTS. I was on a downward trajectory for the past year, with over 20 hospitalizations for fainting and autonomic issues, and they’re telling me they don’t know what’s incapacitating me. I was so defeated and was quickly losing any fight I had left in me.
I made the phone call on a whim. I didn’t have high expectations; I’ve learned to lower them when I meet with physicians so I’m not as disappointed when they can’t help me. I realize that’s quite pessimistic, but it became my defense mechanism. So I made an appointment at Johns Hopkins. I had to wait months to see the specialist.
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To say they were grueling months would be an understatement. Words cannot describe how incapacitating this time was. My body was exhausted. I needed to constantly lay down. If I sat up, I would get a headache that felt like I was being crushed to the ground. I was tired of going to appointments. I was overwhelming to nearly every doctor that met me and was still getting sicker. My heart was making mistakes now. In my gut, my PCP and I knew it had to be somehow a brainstem reaction to something that was angering it, but my previous Chiari decompression surgery was successful. So everyone was left scratching their heads.
For the umpteenth time, I set out to meet with the doctor at Johns Hopkins. I was feeling dejected and pretty close to giving up when I met with the doctor. My mental health was not in a good place. I felt like this exhausted, massive burden to everyone who knew me. I felt that I didn’t deserve to be alive. However, as the doctor pushed on the back of my skull and made me want to throw up and collapse, he said “I know exactly what’s wrong with you. You need surgery to put in a plate to reinforce your previous surgery. When you’re upright, your spinal fluid is collecting and putting direct pressure on your brainstem, causing a lot of your symptoms.” I went numb with shock. I wanted to cry, scream and yell. I was grateful this doctor knew exactly what was wrong, but simultaneously frustrated that it took over 20 hospitalizations and being on bedrest to get to this point. It was a strange, polarizing emotion. I chose to go ahead with the surgery; there wasn’t much of a choice in my opinion.
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Do I feel perfect? No. I constantly remind myself this surgery takes a year to heal from and I’m only two months into recovery at this point. However, I’m sitting up as I’m typing this — something I wasn’t previously able to do. I can go for walks and walk in a store. Sure, I need to take breaks and to lay down after, but it’s a complete 180 from where I was in September.
Why share this story? To let you know that whatever you’re fighting can get better, or how you cope with it can. Your current situation is not necessarily your forever situation. Do not lose that part of you that gets you up in the morning, ready to fight another day. Hope is an incredibly powerful emotion. Even if you have to dig down deep with all the strength you can muster, there’s some fight left in you. And you know what? You’re worth fighting for.
Read more stories like this on The Mighty:
Dear Chiari Malformation: You Can’t Take Everything From Me
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Why I Felt Pressure to Say My Surgery Was a Success
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