Bilateral Neurogenic Thoracic Outlet Syndrome-A slow but successful surgical outcome
My struggles with Bilateral Thoracic Outlet Syndrome
A Canadian Perspective
It started in my right hand. It was very sore and weak virtually all the time. Then the headaches started. It was January of 2003, and the restaurant I managed in my small New Brunswick hometown had just gotten through a very busy Christmas. I was doing more lifting than usual in an effort to help my team out. I thought maybe the extra lifting had hurt my wrist, but when it got to the point that I couldn't lift a French fry basket out of the deep fryer anymore, something I had done thousands of times over the last decade, I went to see my doctor. Little did I know at the time that this would be the first of many visits over the next five years. Each one would wind up more frustrating and heartbreaking than the previous.
Initially my family physician dismissed my headaches as sinus troubles. He had me wear a splint for my wrist, which he said was afflicted with tendonitis. I also changed my work habits so I wouldn't be lifting as much. By April, both my wrists were sore and weak and the pain began working its way into my forearms. I was now using two braces, but they did nothing to help. The pain in my wrists was constant. Every waking moment was difficult. Simply typing on my home computer was getting more and more difficult. My headaches were getting worse and my neck started to bother me. I felt like I was falling apart. Again, my headaches were put off to sinus problems and I was told my neck was just sore due to the straining of two sore wrists. Who was I to argue with my doctor? Surely he knew what he was talking about. He recommended taking two weeks off from work to see if the pain calmed down. My boss insisted I file a work-related injury report though the company. Much as I didn't want to, I listened to her. Worker's compensation wanted me to try physiotherapy. My physiotherapist tried traction, ultrasound, acupuncture, heat, ice and exercises with me to no avail. My hands were numb, tingling, swelling and turning blue. I had never experienced such a burning pain. And it just wouldn't go away, not for a minute.My physiotherapist at the time thought I had thoracic outlet syndrome. I'd never heard of it, but over the next few painful years I'd learn everything I could about it.
Now the TOS shuffle began - I'd dance from expert to expert, receiving different and often vague diagnoses. Occasionally, TOS would pop up. But it wasn't commonly known, so worker's compensation dismissed it. I went to see a physiatrist who said I had carpel tunnel and cubital tunnel syndrome. Worker's compensation sent me out of province to see a neurologist to have electromyography (EMGs) done. By the time I drove the three hours to get there, my arms and hands were swollen and blue. The doctor asked me if my hands did that all the time. I told him they had been only since I started having problems with my hands. The EMGs showed normal results - there was no carpal tunnel or cubital tunnel. The doctor said nothing wrong with me. Hadn't he just seen my hands turn blue? But nothing was wrong with me? Worker's compensation decided that I was able to work. I continued to have a lot of problems and the pain was getting worse. I kept working through it but noticed how much it was affecting my life. Doing laundry was not just a simple chore now, it was a painful one. Doing my hair would bring on pain. Any overhead lifting was setting me off into a flare. What was I going to do? It felt as though no one was listening to me.
In August of 2004, worker's compensation sent me for a magnetic resonance imaging (MRI). Like with the EMGs, the results were normal. Still, according to the tests, nothing was wrong with me. No matter that I was in excruciating pain and couldn't function normally.
In January of 2005, two years after all of this started, I was sent to see a rheumatologist, Dr. Hendersen. He spent 45 minutes with me, the most a doctor has ever spent. He had out his books and did a very thorough check on me. When he finally said: "I believe that you have thoracic outlet syndrome," I cried. My physiotherapist had said the same thing well over a year ago but no one had listened to him either. Surely they would listen to Dr. Hendersen. I had done some research on TOS and found a forum to gather more information on and everything I read was me ... everything about TOS sounded exactly how I felt. Still, no matter what I said, or with a physiotherapist and rheumatologist saying the same things, no one would listen. They didn't know anything about Thoracic Outlet Syndrome, so they dismissed it on the spot. Another year went by before I was sent once again to the physiatrist to find out what was wrong with me. Once again he checked me over and performed various tests that didn't provide any concrete evidence of anything, but he felt I was suffering from repetitive strain injuries and suggested that worker's compensation send me to their rehabilitation centre to do some testing and see what I could and couldn't do.
In March of 2005 I went to the worker's compensation rehab centre for testing. The only thing to come out of this was a list of restrictions I had to follow. The restaurant chain I worked for was at this point getting frustrated with me. In October of 2005 I was off work. I could no longer deal with the daily pain. My life had changed dramatically. Gone were the simple things I had enjoyed. Shopping was such a chore as I could not tolerate my arms hanging at the side. I couldn't enjoy the daily exercising classes or walks I used to do. I was in pain all the time. I couldn't sleep - no matter how I lied down, the pain wouldn't go away. All the doctors kept saying, "Stop working, it will all go away." But it didn't go away. In fact, I was only getting worse.
In December of 2005, my employer decided to let me go. I was devastated. I went into a depression that winter; it was the longest winter I had ever had. I was at home, in pain and no one wanted to listen to me. Friends and family couldn't "see" the pain I was going through. Worker's compensation had decided to put me into vocational rehabilitation and send me to school to start a new career that would be within my limitations. In my early 30s, I was off to find a new career. Two years earlier I had no idea the irritating pain in my right hand would turn my life upside down.At this point, worker's compensation weren't going to send me to see another doctor. In their minds I had repetitive strain injuries and getting a new career would fix everything. No one wanted to listen to what Dr. Hendersen had said about Thoracic Outlet Syndrome. I started to feel as though I had to take matters into my own hands. Through the help of the internet and others who were suffering with TOS I found the name of a doctor who treats and diagnoses Thoracic Outlet Syndrome.
In March of 2006, over three years after this battle began, I found Dr. Drew Bethune from Halifax, Nova Scotia, the next province to the east. In Canada, we have the right to medical care. No one was telling me who I could or couldn't see. I made an appointment with my family doctor and told him I wanted to see Dr. Bethune. He agreed, because at this point, he felt he couldn't do anything more with me. I did not tell worker's compensation about this appointment because I was afraid that they would try to prohibit me from seeing Dr. Bethune. After all, they'd be paying for it, and they had decided they knew what my problem was already, even though nothing they tried to do helped me. My appointment with Dr. Bethune was set October 30, 2006. I had seven months to wait. A few days before the appointment, I told worker's compensation about it, playing dumb that my doctor hadn't let them know already. My husband and I headed out, a five-and-a-half hour drive to Halifax. Dr. Bethune spent almost an hour with me. We went over my full history, we talked and he did testing. After that hour, he diagnosed me with Bilateral Thoracic Outlet Syndrome. He said I would need surgery to remove my first rib as we were too far into it to have anything else work. "I bet you have been made to feel as though this was all in your head," Dr. Bethune said, which instantly brought me to tears. I thought he had no idea, but he did. He said he sees patients like me all the time, people who have suffered for years before they found him. I felt thankful. Over three years had passed and though my physiotherapist and my rheumatologist suggested I might have TOS, and the symptoms I read about online suggested the same thing to me, no one who could help me, listened. But this was final. No one could argue with Dr. Bethune, an expert who treated the syndrome. I finally had an answer for the extreme pain I had been living with. I immediately called my physiotherapist, Jeff, who I had been seeing for almost two years at this point. He was always supportive. He also felt I had been living with TOS and had been treating me for it. I wanted to scream from the rooftops that I was not crazy, that finally my pain was validated. Someone was going to help me.
I waited fifteen months on the waiting list for surgery. Five years later, after the loss of one career and the start of a new one, five years of pain, I had surgery on my left side. Dr. Bethune removed the first rib, the scalene muscles and a lot of scar tissue. I am now home recovering from the surgery, knowing that another is to come. I'll have to have surgery on my right side once I've recovered from the first surgery.
Thankfully, through my five-year struggle, I was able to get a lot of information from the ATOSA website. I was able to gain valuable friendships with people who understand what I am going through. The support is never ending. Knowing that you are not alone in this, to be able to talk with someone who believes in your pain, makes all the difference in the world. I no longer feel so alone.
Well off I go Monday to have the right side done. Gee...from the horrible pain I suffered the first time you would think I would back off in having it done again....( Man the worst part about this is knowing the pain thats coming) The Best part???? Knowing the pain will be over before long. My left side for the most part has been a success. Been some pain lately, but nothing like before and my doc and p/t beleives thats it's stress causing the muscles to spasm..........could be, since I quit my job I am feeling better!!!! lol On another note, I got a new job that I start three weeks after surgery!!! Oh my!!! Sometimes ya gotta do what ya gotta do!!!! Surgery is set for Tuesday June 10th in Halifax. We'll be having better pain control this time....
I hope everyone is doing well and I will touch base when I get home!!