When an EDS diagnosis helps, even years after a soccer injury

My right shoulder is my nemesis, despite progress spurred by my awareness

Karen Del Vecchio avatar

by Karen Del Vecchio |

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My right shoulder has been causing me problems for more than 20 years, though I’ve made much progress. The original injury happened during a soccer game and has reverberated since then, often as either the cause or a participant in my Ehlers-Danlos syndrome (EDS) pain flares. I remember exactly when and how the injury happened, but since I hadn’t then been diagnosed with EDS, I had no idea how much of an impact it’d have.

Growing up, I played boys’ travel soccer. Girls’ sports were beginning to take off, but many coaches then still treated girls differently. I hated that, so I chose to play on a boys’ team instead. My teammates always respected my place, and if any newcomer had anything to say, my fellow players quickly shut them down.

When the injury happened, I was playing forward. The other team’s goalkeeper kicked the ball, but he didn’t send it quite where he’d planned. I took the ball out of the air, with only one defender between me and a breakaway showdown with the goalie. I beat out that defender and sprinted toward the goal, the ball at my feet.

At least, that’s what happened until I felt a catch on my ankles and began flying through the air. The defender I’d beaten couldn’t catch me, but he used his foot to hook around my ankles from behind, causing me to launch into the air in what would’ve been comic had it not ended so painfully. With my full forward momentum, I wound up doing a half-flip nearly 4 feet into the air before crashing down to the ground.

When I landed, the only impact I felt was at the back of my right shoulder.

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The Curious Case of My Ongoing Shoulder Soreness

A journey in treatment

I knew it was bad the moment I landed. Our assistant coach had begun training in emergency medicine the week before, and I remember him coming onto the field and checking to make sure I was breathing and not bleeding. Seeing that I was OK in both areas, he then said, “Well, that’s all I’ve learned to do so far!” Despite my pain, I couldn’t help but laugh.

One trip to the emergency room later, I found out that I’d dislocated my shoulder and broken my right clavicle, or collarbone as it’s more often called. The pieces were held together by one bone splinter, and that’s the only thing that saved me from surgery. Despite that, I had a pretty standard prognosis: Rest, heal, go to physical therapy, and you’ll be fine in a few months.

If only that turned out to be true. Instead, after I spent time in a sling, physical therapy was agonizing, with each session seeming to make my pain and range of motion worse, not better. I eventually gave up, learned to block out the never-ending pain that encompassed pretty much the entire upper-right quadrant of my body, and returned to play anyway. It didn’t make the pain any worse than it was, so I just dealt with it, especially since no one identified another problem.

Surgery several years later, to remove a bone spur that had developed, helped some, but it wasn’t until my EDS diagnosis about eight years after the injury that I finally put the pieces together and found some relief. An amazing physical therapist was the catalyst for figuring out how to make progress with my shoulder, and a rock-star massage therapist played a critical piece in helping me manage my pain.

I’ve come a long way since then. While I still have bad days and pain flares because of the injury, I honestly don’t know how I functioned sometimes with the amount of pain I now realize I had. Although my shoulder will always cause me problems because of its extensive damage, most days now I can do everyday tasks with little discomfort.

Although no one wants to be diagnosed with a rare disease, I don’t know If I would’ve made the same progress without it. I’m thankful for a care team who has spent so much time helping me be as comfortable as possible.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


Christine Miniman avatar

Christine Miniman

I share your pain. At 77 years old, I still have not been "diagnosed" with hEDS, but I have all the hallmarks plus a diagnosed daughter who has two diagnosed daughters. Years ago, I fell down a flight of stairs and, because I was holding the handrail, I severed my right subscapularis tendon and tore the supra- and infraspinatus tendons. I had to have an immediate surgical repair, which failed in a year. Then I had a surgical revision, which failed sometime within ten years. Finally, I had to have a reverse shoulder replacement, which does not come close to a normal range of motion albeit mostly pain free. Unfortunately for me, sometime after 2012, my dog pulled me to the ground and I landed on the back of my left shoulder on the edge of a curb, tearing all five tendons in the rotator cuff and tearing the belly of two muscles in the back of my left shoulder. After being misdiagnosed in an ER and told I was find to go on vacation, I was clearly not fine during or on my return from vacation and had to have those tears surgically repaired two years ago. However, by now, I have significant limitations in my range of motion plus pain that I hoped would have been cured by the first surgery. I am reluctant to get a surgical revision because I believe the quality of the tendons is very poor and that revision surgery will fail just like the one on the right. I am also loathe to get another shoulder replacement, so I will go back to PT and try to find a great massage therapist. You are an inspiration to an old lady! I wish I could still ride a horse!

Paul Ogden avatar

Paul Ogden

When I was younger, I played a lot of football. I was 'double jointed' as it was called then, in my knees and hips. I found I could jump much higher than guys who were taller than me and consequently was played in a position where I could use my 'talent' most effectively. I got to head the ball a lot. Diving headers were my speciality!
Later in life I started to have digestive, breathing, concentration, chronic fatigue issues etc and eventually an unexplained SCA and HA! After getting an hEDS diagnosis, they found a lot of damage to my cervical cord. Cranio Cervical Instability, (C0/C1), Narrowing at C4/5/6 and protruding disc at C7.
I'm limited to what I can do in my early 60's but would I have done things differently, if I'd known? I see a nerve injury specialist physio now.


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