The Despair of Thoracic Outlet Syndrome (cont.)

My anxiety level was through the roof up until the moment that the anesthesia kicked in. If it weren't for my faith in my surgeon, I may have backed out. The first question that I asked when I was coming out of anesthesia was "did you find anything?" My surgeon informed me that it was neurogenic thoracic outlet syndrome. My collarbone and top rib were so close that the nerves to my hand were getting compressed. Nothing but the surgery would have opened that area up. There really are no words to describe my relief. I finally had validation that I was not going crazy and that it was not in my head.

The relief was soon overshadowed by the intense pain. During the operation, my lung had collapsed (pneumothorax) from a piece of rib that had been cut up in order to be removed. I could not take a deep breath, so it initially felt like I couldn't breathe. When I took small, shallow breaths, I had a stabbing pain in my sternum. I was told that was from having the rib scraped off of it. A chest tube had been inserted, and that caused an entirely different pain. The 2-inch incision for the surgery was made on my side, under my armpit. The area had to be stretched a great deal, so it was very swollen and numb. I ended up spending three nights in the hospital instead of the one to two that was originally discussed. I developed a fever on the second night that turned out to be pleural effusion. Antibiotics and pain medications got me through and back home.

The recovery took time and patience. The hardest part for me was not knowing what to expect. I had tried to find people who had been through this but was not able to. I read everything that I could find and still nothing prepared me for it. A lot of things about the surgery were very surreal. Even after I was home, it was hard to believe that it had happened. Evidently, a form of post traumatic stress disorder (PTSD) is experienced by a lot of people who undergo surgeries, especially neurological ones. It's a very intrusive feeling to know that someone was inside of you removing a piece of you. My expectation prior to surgery was that I would be ecstatic if the surgery worked so the things that I was feeling, thinking, and dreaming were unexpected. It also took some time to get used to the incision. There is an odor there initially with a dressing covering it. The area is numb, so touching it feels very weird. You are supposed to wash the area normally, but I couldn't do it. I used a bowl to splash the area until I felt comfortable dabbing it, and then eventually it felt safe to wash it. My recliner and couch pillow were my two best friends during the recovery. Lying flat did not happen for a while, so the recliner was the most comfortable place to be. Hiccups, laughing, coughing, and sneezing (that was the worst) were tolerable only with a pillow pressed into my chest. It took a while to figure that one out, and it was probably the most helpful thing in my recovery. I kept the pillow with me at every moment, and the pain was never as intense when I had it.

It took about three months to begin feeling better. My hand felt better the day of the surgery, so this pain was the recovery pain. It has been four months since the surgery, and I would do it all over again. The symptoms from my TOS are gone, and I got back the life that I fought so hard for. Until more of the medical field accepts TOS as a diagnosis, you will need perseverance, patience, and support when trying to find help with this. There is help though, and it will work, so don't back down until you find what works for you. You are not alone, and it is definitely not in your head.

Last Editorial Review: 6/4/2007