Chronic Pain & Surgery – Part 1
I was a cheerleader my whole life. Not one of those ones that you saw at football games, but the kind of cheerleading that used to be on ESPN. Doing 2.5 minute competitive routines full of tumbling, stunting, & dancing. I wasn’t really sure if I wanted to cheer in college because that meant I would have to use pom moms and cheer for football & basketball. I figured I would try out and see how it went.
I had been a base my whole life, but during try outs the coach asked me to try flying…on coed. This meant that I would have to leave the safety of being on the ground to learn to stand in one man’s hands at least 5ft off the ground. Coach needed someone my size – small enough to lift, but strong enough to hold another girl (while being held by one of the guys) in pyramids. Somehow, even with a fear of flying, I made the coed team. I’m so glad I did, because I loved the challenge of learning something new and the people I met will be lifelong friends, but it also led me down a pretty dark road of chronic pain.
Over 9 years ago I fell backwards out of a stunt and the spotter didn’t catch me well. I hit my head and right shoulder area hard. I was diagnosed with a concussion and as I began healing, I realized I had pretty bad neck pain. The trainer sent me for x-rays and a MRI, but the orthopedic doctor reviewed them and said there was nothing wrong with me. I was only a sophomore at Elon at the time, so I had 2.5 more years of cheer. I figured the pain would eventually go away. I saw the Elon chiropractor at least once a week and the athletic trainers almost every day. I also tried physical therapy, but it seemed to make everything worse. I thought I just had to make it through the next couple of years and the pain would be gone when I stopped cheering.
About 6 months out of undergrad, I realized the pain was quickly getting worse without daily treatments. I saw a spine doctor at a neurology practice and got another MRI. He told me there was nothing wrong with me and I was just getting headaches. Take Advil.
A few years go by. I see doctors, chiropractors, acupuncturists, massage therapists, and physical therapists who all say they can help, but all get to a point in which they say they can’t do anything else for me and to try somewhere else. Some tell me there’s nothing causing my pain, just normal muscle stiffness and headaches. I start believing it’s all in my head. I just can’t handle the headaches, maybe I’m just being a wimp.
It gets so bad that 4 days a week I’m in horrible pain and just want to lay on the couch and cry. Doctors have me try migraine medicine, anti-seizure, medicine, and muscle relaxers. Nothing even remotely helps. My marriage is suffering. My friends don’t understand. I try not to talk about it since it’s “just headaches”. I try to just act normal even when I’m in pain, which is everyday, but some days are too much. They’re just headaches, I should be able to push through. I get to a really dark place. I start believing I have a really low pain tolerance and can’t handle headaches. But I know I can’t keep living like this.
I decide to try one last time to find an answer. I ask for prayers because I’m too frustrated to pray myself. I start seeing all kinds of doctors – family practice, orthopedic, ENT. No one can find anything.
I meet up with a new friend for coffee and apologize for being groggy, my head hurts. She says she understands. She explains she had horrible head pain for a year after an injury. Her symptoms were the same as mine. She said she had been diagnosed with occipital neuralgia (ON), but she’s doing much better since getting treatment. I will forever be thankful for her, as this finally gave me hope.
I find out that ON is basically a damaged or compressed occipital nerve, which causes nerve pain in the head. It doesn’t show up on x-rays or MRIs. It’s so bad that many people with ON are on disability.
I see an anesthesiologist for pain management doctor. I tell him my symptoms and he reviews my record. Before I even ask about ON, he brings it up and says it’s likely I have it. I cry because someone finallybelieves me. He has to do a nerve block into the occipital nerve to officially diagnose it. My insurance refuses to cover it because they say it’s too risky. It’s basically a steroid injection into the occipital nerve. With no other options, we decide to pay the thousands of dollars out of pocket for the nerve block.
It’s magic. For the first time in years something decreases my pain. It’s still there every day, but I can function again. But my pain starts to come back in full force after a month. Two months later, we pay for another one out of pocket, but this time it lasts more than a year. I’m still in daily pain, I still have flare ups every week, but they are more manageable. My big flare ups only come about 2 times a month and last 2-3 days. I’m overjoyed, but still living with constant pain in my head. I finally have real hope that something more can be done.
There was just too much for one post, so I’ve written Part Two here.