Living With Thoracic Outlet Syndrome

Living With Thoracic Outlet Syndrome

It took four and half years to get this diagnosis.

When I was first accepted to the University of Maine Farmington the one thing that perplexed me the most was the requirement to take a gym course. Yes, exercise is important. But for it to be a requirement to graduate from college seemed like a little too much for me. However, I endured it for several months. I played countless games of dodgeball, managed to kick a home run in kickball and even learned to do pushups. However, in April of 2013, about a month before the end of classes I got hit, hard, with a rugby ball in the collarbone and everything has gone downhill from there.

My initial diagnosis was nothing. I went to the hospital for X-rays as the campus doctor was worried my collarbone was broken. The x-ray came back clear and I was sent home with a sling to wear on and off for three days and told to take ibuprofen for the pain. The pain was still evident after three days but I decided that it would eventually go away and after a few weeks, it did.

A full year and a handful of months(August 2014) went by before the symptoms came back. I was working in a retail position and doing a lot of repetitive motions. The pain came on gradually, like an overworked muscle. I took some ibuprofen, finished the work day and went home. When I woke the next day, the pain was bad. It was as if someone had hit me with a rugby ball all over again. I looked in the mirror and was met with a bright red, inflamed collarbone. I took more ibuprofen and ignored it for a while. A month went by before I realized the pain wasn’t going away this time and that it was beginning to affect a lot in my life.

I made an appointment with my PCP. My doctor could see the swelling and she could see the pain I was in. She sent me home with some exercises and referred me to a physical therapist in Farmington. I did my exercises and I saw a PT for 6 weeks. The pain had subsided and so had the swelling. I “graduated” from PT. A couple months went by before the numbness started. The swelling was back and so was the pain, but this time alongside came a numbness in my hands and fingers. The tingling sent me back to my doctor again. This time she sent me to an orthopedic doctor.

The doctor I saw was curious about my pain. She would move my arms in every direction. She was hesitant at first to diagnose me with anything because my range of motion was great. She determined I had bursitis, despite the fact it happened rarely to people my age and sent me back to the physical therapist for a round of therapy designated for bursitis. The PT was also cautious about my diagnosis. We used ultrasound therapy, exercises, and an exercise bike designed to be used with your arms for treatment. We also used Kinesio tape which worked wonders(but I’m highly allergic to the adhesive so the one treatment was all my skin could handle). This continued for a six more weeks. The pain stopped. So I graduated again.

It was a few more months before the pain came back. Again. I called the orthopedic doctor on my own and asked for an appointment. I saw the doctor again and she had no idea what to do for me. She decided to send me for an MRI to see if there was any signs of bone or joint damage, any indicator at all of my pain. I had my MRI done a week later. I had the MRI read, there was nothing on it, so a new doctor gave me a shot of cortisone and sent me on my way. I was tired of seeing doctors at that point. Tired of wasting money and not getting anywhere.

I ignored the pain for a while. September of 2016 was the next time I saw a doctor for my pain. The pain was to the point that I wasn’t sleeping and I couldn’t focus on anything but the numbness creeping up my arm. I gave in and went to an urgent care center. The doctor did nothing. He looked at it for about two minutes before prescribing Oxycontin and Cyclobenzaprine(a muscle relaxant). I was dumbfounded when he told me I was having a muscle spasm. I made an appointment with my doctor who sent me to a neurologist for an EMG test. I had to wait two months to get in. I was hopeful the neurologist would be the answer. He poked me with needles and shocked me with little jolts of electricity. He told me I had pre-carpal tunnel, but nothing else appeared to be wrong.

I stopped seeing doctors after that. The swelling was out of control. I was losing the ability to handwrite. I couldn’t lift anything. I couldn’t sleep on my right side. I was miserable and no one was able to give me relief or an answer to my pain. The pain put me in a bad place. I was depressed all the time. I was grumpy and argumentive.I fought with my fiance over everything.But I didn’t want to go back to any doctors. Finally, after eight months, I told my doctor the pain was still there and how badly it was affecting me. This time she referred me to an Osteopathic Doctor.

I met with this doctor in September of this year. She asked me about my symptoms. She poked and prodded. She moved my arm in every direction it would go. She sent me for an x-ray. Overall, this doctor spent an hour and a half with me, trying to solve my problem. At last, she sat me down and told me exactly what was wrong with me. Thoracic Outlet Syndrome. She also showed me a small but fully healed crack in my collarbone at the shoulder. She also told me the condition has caused Scapula Dyskinesia, which basically means my shoulder blade floats around and also causes pain and damage to my joints.

What is Thoracic Outlet Syndrome?

TOS is a complicated disorder to explain as there are two types: Neurological and Vascular. TOS is a compression of veins, arteries, and nerves through the lower neck and armpit region. This results in pain, swelling, tingling, and weakness from the neck to the fingers. It may also severely limit the range of motion in some people. For the nerve type, the symptoms are mainly numbness, tingling, pain, and weakness. The Vascular types are characterized by paleness in the skin, cold skin, pain, and swelling.

How Do You Treat Thoracic Outlet Syndrome?

This is a tough one as there are many options. The first option for most people is physical therapy as this can usually relax the scalene and pectoral muscles, which are the most common culprits of the disorder. I tried that twice and this new doctor didn't want to send me back again. Another method is cortisone shots to relieve the pain and inflammation. I also tried this a while back and the doctor didn't want me to go through that again. I am currently on a third treatment type for TOS called Osteopathic Manipulation Therapy. To me, it seems like a strange combination of massage therapy and chiropractic. My last treatment session was a few weeks ago. My doctor pushed, prodded and pulled at the muscles in my neck, chest, and back. She also cracked my upper spine. There is still some pain and discomfort, but I have been able to sleep on my right side again for the first time in over a year so it's definitely progress.

My doctor will continue these therapy sessions every three weeks for a few months. At the end of that time period, we will pause treatment to see if I need anything more. The next step would be trigger point injections. This process would be my doctor poking around my shoulder, neck and back until I wince. When I wince she will put a needle filled with lidocaine into the trigger point and move it around until the pain reaction is triggered. Once the correct spot is found, she will inject the lidocaine.

The final option, which she is absolutely against, is surgery. The surgeries for TOS are very painful and have very long recovery times if you even fully recover at all. The surgeries involve cutting just above the collarbone. The surgeon removes 2cm of your scalene muscle as well as your top rib. None of that sounds remotely fun to me, so I am very hopeful the OMT will work for me.

Living With Chronic Pain

When my doctor finally diagnosed me as having chronic pain I wanted to cry. I have lived the past four years with people telling me I was being dramatic and overexaggerating the pain I was in. I was told on multiple occasions there was nothing wrong with me and to live with it.

Living with chronic pain sucks. For me, it's in my dominant arm. It has affected my ability to write. It has affected my ability to sleep. It has affected my ability to complete daily tasks like washing dishes and cooking. It sucks, but I am living with it.

For more information about Thoracic Outlet Syndrome:

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Thank you for giving me a stronger bond with our family.


When I was younger I resented you, I hated every ounce of you, and I used to question why God would give me a parent like you. Not now. Now I see the beauty and the blessings behind having an addict for a parent. If you're reading this, it isn't meant to hurt you, but rather to thank you.

Thank you for choosing your addiction over me.

Throughout my life, you have always chosen the addiction over my programs, my swim meets or even a simple movie night. You joke about it now or act as if I never questioned if you would wake up the next morning from your pill and alcohol-induced sleep, but I thank you for this. I thank you because I gained a relationship with God. The amount of time I spent praying for you strengthened our relationship in ways I could never explain.

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Thank you for giving me a stronger bond with our family.

The amount of hurt and disappointment our family has gone through has brought us closer together. I have a relationship with Nanny and Pop that would never be as strong as it is today if you had been in the picture from day one. That in itself is a blessing.

Thank you for showing me how to love.

From your absence, I have learned how to love unconditionally. I want you to know that even though you weren't here, I love you most of all. No matter the amount of heartbreak, tears, and pain I've felt, you will always be my greatest love.

Thank you for making me strong.

Thank you for leaving and for showing me how to be independent. From you, I have learned that I do not need anyone else to prove to me that I am worthy of being loved. From you, I have learned that life is always hard, but you shouldn't give into the things that make you feel good for a short while, but should search for the real happiness in life.

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I have learned that the cycle of addiction is not something that will continue into my life. You have hurt me more than anyone, but through that hurt, I have pushed myself to become the best version of myself.

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Ariana Grande Is Bringing Much-Needed Attention To PTSD, It's Time We All Learn What It Really Is

"not a joke."


This week, Ariana Grande posted a picture on her Instagram that wasn't your typical selfie or self-promotional snapshot. She uploaded a picture of a comparative brain scan and her brain scan side by side to show what her PTSD looked like on the biological level. The picture was accompanied by the stark caption, "not a joke."

It isn't just her. Survivors of school shootings have repeatedly shared stories about the grief and stress they experienced after watching their friends die at the hands of gunmen. Studies have shown that PTSD can occur in anyone, regardless of age, ethnicity, gender, sexuality, etc. It is no longer the sole purview of shell-shocked soldiers returning from distant wars. It is affecting everyone from celebrities to school children. So what exactly is it?

PTSD stands for post-traumatic stress disorder. It is a psychiatric disorder that can occur when people experience or witness traumatic events, which in Grande's case was the shooting at her Manchester concert in 2017. She herself has said so.

The Diagnostic and Statistical Manual or Mental Disorders, or DSM for short, is America's (and to a close extent, Europe's) handbook of mental illness. According to the DSM, symptoms of PTSD include intrusive thoughts such as repeated flashbacks, distressing memories, or nightmares of the event. People with PTSD also actively avoid reminders of the event, such as associated people, places, objects, or situations. They may have general feelings of fear, anger, or sadness, as well as hopelessness. They may have memory problems, sleeping issues, irritability, and begin to distance themselves from friends and family as a result. It is a terrible condition and one that can lead survivors of traumatic events to suffer long after.

According to the American Psychiatric Association, an estimated one in 11 people will be diagnosed with the disorder in their lifetime.

Many more who have it will not, whether it is because they don't want help or cannot afford it. Women are also twice as likely to have PTSD than men. Whether this is because of the pervasive fear and threat of violence women live with, or other reasons, I will refrain from commenting. Causes of the disorder include physical assault, sexual violence, gun violence, abuse, accidents, and natural disasters, amongst others.

Of course, the rumor mill has started to dredge up other sordid details from her past, trying to piece together a timeline of her trauma and gauge whether or not her condition was "real enough." But it is useless and even dangerous to toss around armchair theories like this. Trauma means different things to different people and trying to make value judgments is not remotely a good idea. It also adds to the stigma surrounding mental illness, when sufferers continuously doubt the validity of their condition and may refrain from seeking help because of this self-doubt.

One of the most important factors in helping people with PTSD is to support them. Social support can make a huge difference in recovery and whether people develop the condition in the first place. Of course, someone can have the most supportive family in the world and still develop the condition. As Grande's post demonstrates, PTSD is a hard biological reality that can take anywhere from years to a lifetime of recovery.

As with much of psychology, it can be tempting to dismiss it as a lack of resilience or turn it into a zeitgeist buzzword. But sticking our heads into the proverbial sand isn't going to help anyone. Neither is dismissing the very real trauma of violence by ad hominem attacks describing the survivors as moody-sensitive-weak-immature or whatever term the oldsters like to use these days. Much like the soldiers before them, they have seen people gunned down in front of their eyes while they were filled with a dread fear for their own lives.

Social media means we can no longer turn a blind eye to the pain so many of our peers are living in. So we must face it, head-on. We must support those who are suffering and reduce the stigma and self-doubt that keep survivors from accessing the help they need. We can start by listening to their stories and sharing information. In the words of Ariana Grande's Song "get well soon," "you shouldn't be alone," and you are not.

A good start is talking to your doctors or other health care providers. If someone you know and/or love has PTSD, support them. If you yourself have it, try and find a counselor or therapist to get help. If you feel conscious of being the focus of attention, there are support groups for trauma survivors, and even for the relatives of people with PTSD. The National Substance Abuse and Mental Health Services also has a number that you can call for further information for yourself or someone else at 1-800-487-4889.

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