Living With Thoracic Outlet Syndrome
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Health and Wellness

Living With Thoracic Outlet Syndrome

It took four and half years to get this diagnosis.

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Living With Thoracic Outlet Syndrome
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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:

https://www.mayoclinic.org/diseases-conditions/tho...



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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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