Luke and I traveled to St. Louis, MO last month for what we hope to be the culmination of a four-year health journey for Luke. We traveled there for Luke to have surgery for what was finally diagnosed as Thoracic Outlet Syndrome. Luke will write of this experience in his own words.
For those of you who don’t know Luke, introduce you to him. Luke was born with a smile on his face that never stopped, always in a good mood, always positive. His strawberry hair and smile sparkled in the sun, whether the sun was out or not. Luke’s undiagnosed asthma had the two of us in the Emergency Room every month for two years, his ages one -three. His translucent skin slowly took on color as he took in oxygen and he came out of the semi-conscious state that these episodes brought on. He never complained. This kid is tough, tough, tough.
Generous of spirit, Luke loved books, reading, exercise, and sports. When people asked me how Luke was doing in college, I said, “That kid will thrive anywhere. It’s just who he is.”
Luke tells his story in his own words:
“Hi everyone! Thanks for taking a minute to read my story. I apologize if it’s a little shaky. I’m writing left-handed, while recovering from surgery. Don’t worry, I still have my right hand; my arm is just sore.
Like Mom said, this surgery was a long time coming. If you’ve met me over the past four years, you’ll know I’ve been struggling with a chronic and mysterious pain that doctors, until recently, were completely unable to diagnose.
The U of A has a wonderful Recreation Center, and I made a point to lift weights a few times a week. While I was a sophomore, I was bench-pressing the same weight that I always bench-pressed, when something in the right side of my chest gave and tore. I racked the weight, left the gym, and scheduled a doctor’s appointment. There, I was assured the issue was a minor shoulder strain that would heal on its own with time.
Long story short, it didn’t. I spent most of that semester unable to open doors or lift my arm above my head, waiting for the injury to heal. Every time I visited a doctor, I was told that with rest and time the injury would heal, and that I was really too young to be in this kind of pain anyways. That was a phrase I heard a lot “You’re really too young to be having this kind of issue.”
Years passed and the pain evolved, it went from being a muscular issue rooted deep in my chest to a burning pain that radiated up the entire right side of my neck and into my trapezoid muscles. It was motion-induced, which is to say that the more things I wanted or needed to do, the more pain I would be in by the end of the day. Activities that brought me pain included walking, sitting, lifting things, looking to my right, and just talking with people.
At this point, we were desperately looking for a doctor with an answer. We had appointments with orthopedic surgeons, and multiple pain specialists. We traveled to the Mayo Clinic for a consultation. Almost every visit began with, “You’re too young to feel this way,” and ended with an order for some kind of medical scan, MRI’s, X-rays, EMGs: all tests to try and see some muscular or nerve issue. They all came back negative. At this point, we were trying everything we could think of, multiple courses of physical therapy, chiropractic treatments, orthopedic massage, acupuncture, CBD, a series of nerve ablations, and on and on. You name it and I have probably done it.
At this point, it had been about three years of searching for an answer, while spending every day in pain. I was both embittered at the medical profession, and hopeless that I would one day find an answer. I have my family, and Mom in particular, for never giving up on the hope of an answer.
Roughly sixth months ago, my doctors decided that all muscular issues were examined, we turned to the brain. Maybe, the theory went, my brain had just gotten used to firing off pain signals and hadn’t stopped, even after the muscle in my chest had healed. Working on this hypothesis, we met with a neurosurgeon here in Santa Fe.
I won’t disclose his name, but he was and a different kind of doctor than I was used to seeing, and I’d seen a lot. When I told him the story that I just told you, he didn’t say, “you’re too young to have this problem,” he said, “I’m sorry that you have this problem so young.” He ordered another scan, which was again, negative, and then said that in his opinion I couldn’t have anything but neurogenic Thoracic Outlet Syndrome (TOS), and that he would refer me to a specialist clinic in St Louis, MO.
By this point, I was used to doctors developing a pet diagnosis for my problem that ended up being wrong. My personal favorite was one doctor’s diagnosis of early-onset-right-side-of-neck arthritis, for which I received weeks of treatment with absolutely no benefit. I’d learned to treat their theories with a bit of suspicion.
So, I looked up Thoracic Outlet Syndrome and the clinic in St. Louis, MO. I may also have read the book about Thoracic Outlet Syndrome written by the lead surgeon, just to be sure. What I found was encouraging.
I fit the patient profile exactly. Most TOS patients are young, otherwise healthy individuals with chronic pain induced by most activity. Most TOS patients bounce around the medical system for two or three years before receiving their TOS diagnosis, as the criteria for diagnosis is, get this, multiple negative medical scans. All those MRI’s and X-rays paid off after all.
So, what is TOS, I now wanted to know. Well, it’s a condition that develops when the brachial plexus nerves, which run from you fingertips, up your arm, through your pectoral muscles and up into your neck and shoulder blades, are compressed by some obstruction. The obstruction can be anything, well, three things really. Either a permanent muscle spasm in the pectorals or scalene(neck) muscles, an odd growth on the first rib, or scar tissue built up from a previous injury.
Long story short, I had a video call with the lead surgeon who diagnosed me with TOS and scheduled me for surgery in St. Louis. Mom and I took what turned out to be a really wonderful road trip to the hospital, and I had my operation on April 2, 2021.
During the operation, the surgeon found a large amount of scar tissue around my pec minor, which he removed. Hopefully, this was the mysterious cause of the problem: the thing we’ve been looking for all these years. I’m still in recovery at the moment, and so it’s hard to tell if the new pain from the surgery is covering up the old pain, and where I’ll be in three months, but I can say that the burning pain, at the moment, is gone.
So, the story isn’t over, but hopefully this is the last chapter and we’ll have more good news for you soon. Before I go I’d like thank Mom for being the driving force behind my recovery. I definitely would not have made it through this experience without your help, and the help of all our family and friends, that’s all for now, thanks for reading!”
This is Dawn again. Amidst all, Luke and I had a magical time together. Along the way, we were able to spend time with my Aunt Elaine (Dad’s sister) and cousins, Brian and Brett.
We made the most of the trip and saw some of the sights of St. Louis between Luke’s pre-op appointment and the day of the surgery.
We took in the Gateway Arch, as well as the Botanical Gardens. We played a lot of chess, drank a lot of Tension Tamer Tea, and crushed it on the Harry Potter Trivia cards.
We loved the Botanical Gardens. It was a cold day. We entered the dome and I said to Luke, “This is exactly like Costa Rica.”
We quickly shed our coats and wandered for an hour, taking in each exquisite plant, flower, waterfall, Chihuly glass sculpture, lizard, all. Pure magic.
When not in the hospital, I worked on my dissertation.
St. Louis bloomed with daffodils during our time there. My color, flower-loving heart and spirit drank them in. A dear friend in Vermont mentioned how her daffodils had poked their blooms up through the snow that week, “They’re so resilient.” These are the perfect flowers to be blooming during Luke’s surgery, I thought. Luke’s resiliency throughout this journey never ceases to leave me humbled and inspired.
Six days after surgery, Luke was discharged and we headed home.
One day Luke will write his full story. One day, I will write the mother’s story of this journey. For now, we focus on his healing and we hope.
When Wyatt was two-years-old, he called me ‘the Mommy Lady’ and I’ve been the Mommy Lady ever since. This Mommy Lady’s heart overflows with gratitude for a diagnosis at long-last and with optimism for what lies ahead for Luke.
Mostly, this Mommy Lady’s heart overflows with love for the brave soul I am fortunate enough to walk through this life with as my son. Here’s to the next chapter, Luke. I know you will write it well.