By Freya Coombes
THIS WOMAN became a living statue after an ankle injury during a football match led to a ten-year long 37-surgeries nightmare.
Artist Megan King (33) from Illinois has undergone 37 surgeries in total due to previously undiagnosed Ehlers-Danlos Syndrome (EDS) exacerbated by a traumatic a dog attack.
EDS is a genetic connective tissue disorder that impacts collagen. Collagen is a protein produced by your body and plays an essential role in the structure of the body. Faulty collagen can lead to a large variety of symptoms including muscle tears, joint dislocation, heart issues and pooling blood.
There is no cure for EDS.
Megan’s first EDS incident occurred on September 21st, 2005. During a football match, Megan’s unknowingly weak tissue in her body ripped, causing severe pain and injury. Doctors thought Megan had only injured her ankle, however, she had in fact injured her right ankle, knee and hip from a bad landing during a football match. She had also damaged her left him and shoulder blade.
This led to Megan being left on crutches for 16 months whilst she recovered. At the time, Megan’s EDS was undiagnosed. The domino effect that followed was difficult to diagnose, leading to the confusion of doctors.
Megan’s EDS went undiagnosed for 10 years, with multiple telling her “you’re depressed”, “you’re being a dramatic teenager” and “this is all in your head”. After her diagnosis, the doctors were able to work out that the muscles in her shoulder blades had torn off, the cartilage had ripped, her joints and dislocated and her entire spin was unstable.
Megan’s EDS has caused multiple extreme issues leading to 37 surgeries, starting in 2006, much of which have led to decreased mobility. Megan’s first spinal surgery in 2016 included the fitting of a halo brace, a C3-T2 fusion and a skull-C5 fusion. She has since had several more spinal and skull fusions for stabilization and a broken neck. She has also had two spinal fusions reversed, five leg surgeries and a total of 22 surgeries on her shoulder blades.
Although spinal fusions are not uncommon, fusions from the skull to the pelvis are incredibly rare. Only 10 people worldwide are fused in this manner.
To make matters much worse, Megan underwent a traumatic ordeal in 2020. On the 4th of May Megan was attacked by a loose dog whilst on a walk with her leashed dog. Megan had undergone a spine and pelvis fusion only eight months prior.
Due to the dog attack, the rods in her lower back both broke, the screws in her left SI joint loosened and she had to undergo surgery on her back. She now has lasting sciatic nerve damage along with trouble walking a severe lower back pain.
A customer wheelchair was made for Megan, helping to alleviate the pain which has significantly helped Megan.
Thankfully, Megan now has a diagnosis and is able to get the medical help she needs. To fund the numerous surgeries she has to undergo Megan has set up a GoFundMe page. The organisation AeroAngel flew her to her spinal surgeries for free, helping to ease the cost.
Megan continues to document her journey, sharing this with people and hoping to educate people about EDS.
“When collagen is faulty it can cause an array of symptoms because collagen is like the foundation to a house. If the foundation is weak the house can fall apart,” said Megan.
“There is a mirage of symptoms that can accompany EDS. It’s sneaky and can be difficult to diagnose. No two cases of EDS are the same and there are varying severities.
“Faulty collagen can lead to muscle, tendon, ligament tears, joint dislocations, subluxations, widespread pain, digestive issues, blood pooling, heart issues and a multitude of comorbidities. There is no cure at this time. Symptoms and conditions are treated as needed.
“I went without an EDS diagnosis for ten-years despite significant joint problems, and failed surgeries for severe instability. EDS made its appearance the day my accident occurred September 21, 2005. My accident did not cause EDS. EDS “woke up”.
“Initially all medical personnel thought I only injured my right ankle that day. The reality is I injured my right ankle, right knee, and right hip all from one bad landing from when I jumped up to catch a football. My tissue was weak and ripped.
“My left hip and my shoulder blades were damaged from a combined total of 16 months on crutches.
“A domino effect of injuries happened all at once. My once very strong athletic soccer body is what kept my non-existent symptoms at bay.
“After my injury, all the exercise ceased and that’s when my joint problems began.
“I went without an EDS diagnosis for ten years despite significant joint problems, and failed surgeries for severe instability.
“I’ve endured 37 surgeries: five on my legs, 22 on my shoulders and shoulder blades and ten on my spine.
“My shoulders and spine are my biggest limitation. My shoulders and shoulder blades have had surgeries to stabilize them but I lost full mobility. I’m fused from my skull to my pelvis. I can’t move my head to look up, down, left or right.
“For one to have spinal fusion hardware from their skull all the way into their pelvis is very rare. It makes ‘I am titanium’ have a whole new literal meaning.
“It can be difficult for many to understand that there is truly zero spine motion.
“I can’t curl into a ball when I have a stomach-ache. I’m like a statue. My torso doesn’t move, only my arms and legs.
“My parents went from taking me to soccer games and practices to doctor appointments, physical therapy, and surgery- many of which were out of state.
“Life changed on a dime. For ten-years I went without a diagnosis.
“The number of times I was told, “You’re depressed…You’re being a dramatic teenage girl…There’s nothing wrong with you…You’re hurting yourself on purpose…This is all in your head” is outrageous. The mental mind games were brutal.
“A diagnosis was the most validating thing on the planet. I had a reason why my body literally fell apart and some surgeries were failing. There was a reason why: my muscles tore off my shoulder blades, the cartilage in my shoulders ripped, my joints were dislocating and subluxation in my sleep, my ribs were shifting, my body hurt, and my heart rate would get high just by changing positions, my entire spine was severely unstable, digestive trouble, medications not being as effective as they should, horrible neck pain with a tugging sensation at the back of my skull etc.”
Megan talks about the dog attack.
“What happened to me could happen to you. The solution is simple: leash your dogs in mandatory leash areas,” said Megan.
“I was eight-months postop from having my spine and pelvis fused together. I leashed my dog and went to take him for a walk.
“Five minutes later I was attacked by a loose dog.
“It’s very difficult for me to discuss the attack. I get anxious. My heart rate rises. I flashback to the altercation and it’s like being there all over again.
“The dog’s deep barking and growling hit me in my core.
“During the attack, I tried to get away with my 70-pound dog by “twisting” to the right while pulling him.
“Since my spine doesn’t move, I can’t actually twist. The rods snapped from repeatedly pulling and “twisting”.
“The owner wasn’t with the dog.
“To say it was horrifying is an understatement.
“My doctor told me it took an exceptional amount of force for the rods to break.
“I was taken by ambulance to the hospital where I was admitted.
“The rods in my low back at L5/S1 broke on both sides. The screws in my left SI (sacroiliac) joint loosened.
“I had to undergo surgery on March 12, 2021, to have surgery from T10-pelvis. The surgery was successful in repairing the broken hardware.
“Unfortunately, I’ve had lasting damage to my sciatic nerves. I have severe low back pain and trouble walking.
“The nerve pain I experience in my legs burns like crazy. I walk with a limp and can’t walk far due to severe pain.
“A custom wheelchair fitted 100% to me, had to be built to help alleviate some of the pain. My wheelchair opened up my world.”
Megan shares some advice for those suffering and in pain.
“I just want to emphasize how important it is to advocate for yourself,” she said.
“By nature I’m quiet and I’m very shy. The thought of having to stand up for myself or suggest an idea to the doctors who went to medicalschool was horrifying to me. You know your body best.
“You know what you’ve been experiencing. Learn as much as you can. The hours of research I’ve done is endless.
“When my doctors didn’t know what was wrong I figured then I may as well try to help. Learning the language of medicine and being able to communicate with my doctors made a big difference.
“When I think back on what I’ve been through, it’s scary to think where I’d be if I hadn’t spoken up.
“With pain, there are a lot of times I don’t want to go out. Then it dawned on me that I’m either going to hurt at home or I’m going to hurt while having fun going to a movie or out to a restaurant.
“I think finding a healthy balance of being able to get out & about with pain is important to living your life. Don’t put on a cap on what you’re able to achieve. Attainable goals go far.”
To follow Megan’s story, visit her Instagram @TheTravelingHaloOfHope