“I grew up in southern California and lived a very normal life. When I graduated high school I attended Acadia University in Nova Scotia, Canada. It was a huge jump and cultural change and I absolutely loved it. I was a hard working, driven person and did well in school, had a social life, and was enjoying the freedom of moving so far from home. Fast forward four years, skip over two ex boyfriends, my best friend abandoning me, dropping out of university because of funding, many icy falls, and a car accident, I was living in Halifax with a friend and boyfriend, working full time at a call center, and taking online classes at a community college so I could keep my student visa valid.
I was so happy. I was really into embroidery, read books, went out on the weekends, played video games, and was a pretty normal 21-year-old person. During my time at the call center my arms called it quits. It started as just simple soreness after work, which I attributed to working on a computer full time and doing lots of detailed hobbies. Over about three months the pain became so much that outside of my 8 hour shifts, I was able to do nothing with my arms. Not just my crafting or video games, but washing my hair was a struggle, cleaning the house, carrying any weight at all became impossible. Whether it was a random thing, something I caused by slipping on the Canadian winter ice, leftover stress from a car accident a few years earlier, I don’t know.
But in February of 2015 my life changed forever when I had to do nothing all the time so I could survive my work shifts without suffering.
The first time I remember having to give up and let go of something I used to be able to do was when we were playing D&D and I had to give up record keeping to somebody because I couldn’t hold the pencil without major pain.
I didn’t know what was happening or what to do about it.
But I was driven to succeed so I applied to the University in town so I could finish my degree. I was accepted, and planned to enter courses the upcoming semester.
This fell around the time I was going to fly home to California for a friend’s wedding, so I tried to put my confusion and pain on hold for the trip and went on with my life.
I was on my way back to Canada going through customs in the Toronto airport when I got pulled into secondary screening. I didn’t know why, but I hate that airport and nearly missed my flight every time I have flown through there, so I was merely annoyed by the delay. The customs agent told me I had violated my student visa and needed to prove to her at that moment that I was taking college courses or she wouldn’t let me through customs. I called my boyfriend and tried to find email records of my classes and I cried and cried. I think she eventually let me through because she was tired of watching me bawl in her office.
I made it back to my apartment and quit my job, by recommendation from an immigration officer that was at the airport, and waited. My arms and pain problems were so far from my mind. I was on the verge of losing everything I had built since moving to Canada, my entire adult life. Eventually an immigration officer came to our door and asked me to come down to their office so we could talk in person. I sat in a locked concrete room and was told all my wrong-doings and mistakes and what my options for consequences were. I had to leave the country to reapply for my student visa so I could still enter school in the fall. I could no longer work in the country and would most likely never be granted a work permit again.
I found a job in New Hampshire, a ten hour drive away, to work over the summer for three months and get my visa, and move back in the fall. My boyfriend didn’t want to wait that long and broke up with me as I was packing to leave. My arms hurt but my entire life had just crumbled and that was much more painful. I moved to Lake Winnipesaukee for three weeks before I was too depressed to keep pushing forward. I called my dad and he came to get me and drive my car back to California. During the drive I cried a lot and processed a lot of what had happened so far. I applied to Colorado State University, writing up essays on the notepad application on my phone, and hoping auto correct was on my side. I arrived home in California and after a summer moved to Fort Collins where I was accepted to study at CSU.
After settling in Colorado, starting up classes, and not having my life falling apart around me, my arms reminded me they were upset about something and needed attention.
I saw a campus doctor who put me in physical therapy which only sort of helped. He called for X-rays, an MRI, and an EKG, all of which weren’t covered by my student insurance, so I was flying home to California often to get tests done under the guise of insurance.
The worst one was the EKG done by a woman who tortured me all through the test. When the time came for the follow up she had nothing helpful to say but insisted I was fat and overweight and that’s why I was having pain symptoms, but also I was too young to be having the symptoms I claimed to be experiencing.
I was done. I got off my parent’s insurance and was a Colorado resident so I applied for Medicaid and was approved and my life changed when I met PA Jonathan Manto at the Salud Family Health Center in Fort Collins. He was the first doctor to actually listen to what I was saying and take my pain seriously. I had to do months of physical therapy at a different office that I actually liked (yay Rocky Mountain Physical Therapy!), three ultrasounds, two MRI’s, and a CAT scan before I even was able to see the only specialist in the area on what I had been diagnosed with: Thoracic Outlet Syndrome. Most likely neurological and venous, caused by an extra set of cervical ribs that I was born with. So if I press my hand into the space about an inch above my collar bone I can feel the bone of my extra ribs poking forward. The chance of having these ribs is about 1 in 500. Basically the thoracic outlet is a tiny hole in the chest where all the nervous and vascular function for your arms runs through. This can be compressed by cervical ribs (like me) or by muscle and this is a sort of common problem with athletes in sports like baseball and hockey where the shoulders and chest are being used aggressively.
Having a diagnosis was so relieving. I had a reason as to why my arms hurt so badly all the time and were so cold my whole life. I will never know what exactly caused my cervical ribs to be fine for 20 years and then suddenly not fine, but what mattered is I was lucky enough to find care and have the insurance I needed to get help.
By this point I was dating my future husband and Jacobi helped me do things like make meals, complete my homework, and manage my appointments so I could work a part time job, be in school full time, and prepare for a major surgery. In my last semester of my degree I was offered a surgery date. A first rib resection, to go in and take out whatever was getting in the way and compressing the thoracic outlet. I would be out of school for a week and barely able to use my arm for a month. Being in the theatre tech program and having a focus on scenic design made this very difficult but my professors were understanding and encouraging and allowed me the time and pace I needed to have the procedure and still graduate.
The surgery went well and my surgeon and nurse team were kind, helpful, and talented.
I spent three days in the hospital recovering being the youngest patient in the vascular/heart ward. With so many of my nerves having been compressed, the surgery was rough on them and almost two years later I still am mostly numb on the underside of my arm. It was hard to tell as I healed if I was feeling less symptomatic or not. After I graduated with my BA in Theatre, I had my right side go under the scalpel for a mirror procedure of what we had done before.
This procedure also went well and I was relatively symptom free for an entire year before I had to go on a nerve medication to lessen some of the pain. I still struggle with this chronic pain and disability. It shapes what hobbies and career paths I am able to pursue, what level of health and athleticism I am able to maintain.
Now being married and a homeowner I struggle often with letting go of some of the responsibilities for the sake of my arms. My husband is amazing and kind and helps me constantly. I hope to continue to find ways to manage my pain and claim back some of the normal life I had before. For now this means medications and weekly physical therapy, but eventually could lead to another set of surgeries. I am ready and willing to try new ideas and techniques to give myself the best life I can have.
The chronic illness or ‘Spoonie’ community has been a lifesaver for me. It has allowed me to connect with other people who have TOS, and people who have other illnesses and chronic pain. It is incredibly reassuring to know that on my worst pain days, I am not alone. Thoracic outlet syndrome is a condition that happens more often to women and young people and I am constantly trying to bring awareness to women’s health and young people’s health. These are both fields that get looked over and forgotten and there is a huge group of people suffering for it. The medical field is aimed at solving immediate issues and not long term solutions for chronic conditions. Our way of dealing with medicine must adapt. The amount of stories that begin with doctors saying: ‘You’re too young. You’re making this up. It’s all in your head.’ is appalling.
If you are ill and looking for a community and people to relate to and help you, I encourage you to follow me and the people I follow on Instagram You are not alone, there are people all over the world looking for community and solace.”
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