Plumbing the Pits of Despair with Thoracic Outlet Syndrome
One patient's story
Author: Betty Kovacs, MS, RD
It took three years and three months, three MRI's, two X-rays, two EMG's, and nine health-care professionals for me to feel better. It was a journey that felt like forever with exhausting highs and lows. Each new doctor's appointment was entered into with hope and walked out of in despair. Those who were unable to diagnose my condition were able to make me think that it was all in my head. Fortunately, or unfortunately, my symptoms progressed and out of desperation I gave one last doctor a chance. That last chance saved my sanity and gave me back my life.
Thoracic outlet syndrome symptoms and signs
My symptoms started off somewhat vague. I had taken on a new position at work that required a lot of time on the computer. I began having pain on my right side in my neck and shoulder with tingling in my hand at the end of the day. I felt a lump on my cervical spine that I assumed to be the cause of the symptoms. I went to an orthopedic surgeon who sent me for an MRI to rule out a tumor. I was assured that he had never seen a tumor in that area, but that did not ease the heart-wrenching fear of a possible tumor. I soon learned that I did not have a tumor and that I was too claustrophobic to ever get back in an MRI machine. I was so relieved that I decided to wait and see if the symptoms went away on their own.
For the next year, I got massages and stopped lifting weights to help with my pain. My outer three fingers on my hand had begun getting cold at the end of the day. As time went on, they would get cold after a few hours. I couldn't tell if the shoulder pain was causing the hand pain or vice versa. I went to a leading hand surgeon to figure out what was going on. The diagnosis was discomforting. I was told that this was simply a case of poor posture and that physical therapy (PT) would correct it. I have been tall my entire life, so my posture is a sensitive area. At 32 years of age, I did not expect to ever hear that I have to sit up straight again.
After much hesitation, I went to see a physical therapist that a friend had recommended. We explained my situation and asked if he could figure out the cause of my symptoms. He examined me and walked in with a book that showed an image of something called thoracic outlet syndrome (TOS). It was the first time that I felt that sense of relief that you get when something finally makes sense. I tried PT for three months and did not get relief from my symptoms. My physical therapist and I decided that I needed medical assistance with this.
Diagnosing thoracic outlet syndrome
I went to a physiatrist who took a chest x-ray and told me that I had a cervical rib, which is a very common cause of TOS. He gave me valium for the spasms in my shoulder and chest (by my armpit) and recommended that I increase PT to twice a week. I did so for two more months until one day my three fingers went cold doing an exercise that I had done for the past five months without any problem. My physical therapist was at a loss for what to do, so I was back to square one.
Three months later, I went to another physiatrist who came highly recommended. I mentioned TOS, but the doctor did not seem to believe that my symptoms were being caused by that. Instead I was sent back into the dreaded MRI machine to rule out a tumor in my chest. Again, no tumor was found and I was left without an answer. Meanwhile, my fingers were now going cold without any identifiable trigger. My neck, shoulder, and chest were in constant pain. I went back to my original orthopedic surgeon three months later. Once again, I was told that TOS was a possibility, but unlikely, according to him. I was told that I would have to go to Boston (I live in New York) for an official diagnosis of TOS, but his recommendation was that taking three months off of work would get rid of my symptoms. Work was busier than ever and I didn't believe that it would actually work, so I never took the three months off.
My sense of despair had taken over. It had been over two years since I lifted any weights and over a year since I was able to work out without pain. My daily activities revolved around my pain. Everything was getting worse, and no one seemed to know what to do. I hit my threshold for suffering and went in search of another doctor.
It was exactly three years from my first appointment and I finally found the doctor who promised a diagnosis. This was my third and final physiatrist. It turned out that there was a place in New York where I could have an MRI done to test for TOS. I learned to never say never after my third MRI. I also realized that my fear in the MRI machine was very real and justifiable. I was given valium for the day of the test and taught some deep-breathing techniques that made it more tolerable, not enjoyable. The doctor ordered chest x-rays that ended up showing that I did not have a cervical rib, which had been my one connection to TOS. The MRI was inconclusive. The doctor was still convinced that I had vascular TOS, so he sent me to a vascular surgeon who had performed operations on TOS patients. I was able to see the surgeon two weeks later. After a full examination, the surgeon determined that it was not vascular TOS but could possibly be neurogenic TOS. He wanted an EMG done to rule out a blockage coming from my neck. Once again, my tests were negative. The final decision was mine to make. The surgeon offered to perform a transaxillary rib resection in the hopes of finding something once he went in. This was an invasive surgery that was not going to be without substantial recovery time and possible complications. After so many failed tests, it was hard to be hopeful any longer. My final decision to proceed with the surgery was out of desperation. I felt like my life was being controlled by my pain, and I had to try anything to find relief.
Thoracic outlet syndrome treatment
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.
Recovery from thoracic outlet syndrome treatment
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.
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Medically reviewed by John A. Daller, MD; American Board of Surgery with subspecialty certification in surgical critical care June 22, 2017