My Thoracic Outlet Syndrome Experiance

Hi everyone, I was diagnosed with Thoracic Outlet Syndrome a couple of weeks ago so I thought I would share my experience since I was looking for other's experiences once I learned I had this. I am a 35 year old healthy and fit police officer. I worked out on a regular basis and actually increased my workouts (mostly running and push-ups) prior to this. On a Saturday afternoon I had a sudden onset of symptoms to include pain, swelling, and discoloration in my right arm. I went to the ER where the physician immediately recognized this was a blood clot. They did an ultrasound to confirm his suspicions and admitted me into the hospital. What we did not know was the cause of the blood clot. The following morning the vascular team performed a procedure where they removed the clot. I was told it was a large clot in my upper arm dangerously close to my neck. Once they cleared the clot I thought I was in the clear. The thoracic surgeon informed me that I had something called thoracic outlet syndrome (veinous). The physician explained what TOS was and speculated it occurred due to recent workouts where muscle was built between my first rib and clavicle. He initially indicated he could do the rib resection stating he has done a few in his career. We were also told we had time (up to three months) to have this surgery done. I began to realize this was not a common and simple procedure. Within 24 to 36 hours I had the same symptoms in the same arm and returned to the hospital. They conducted another procedure to remove the clot and told me I now needed TOS surgery done sooner than later.

Decision where to have surgery

There are several risks and possible complications which can occur. After a day of trying to decide when and where to have the surgery, we got in contact with Dr. Ying Wei Lum at Johns Hopkins Hospital. Dr. Lum is an experienced thoracic surgeon who has a special interest in TOS. After doing more research, and learning that Dr. Lum does this surgery on a regular basis for people all around the world to include professional athletes, I along with my family decided it would be best to travel to Johns Hopkins and see Dr. Lum. I met with Dr. Lum on a Wednesday where he went over my tests which had already been done as well as an additional Ultrasound I had at his office. Dr. Lum explained the pros and cons of having the surgery. Since I was young and need full use of my arm, he recommended the surgery and physical therapy to follow. I cannot begin to explain the anxiety I had. I was worried about so many things to include a pulmonary embolism, other surgical complications, and of course the thought of not having full use of my right arm down the road. Deep down I knew I made the best decision no matter what and had to suck it up and give it the best shot.

Surgery experience and recovery

I arrived at the hospital the following Friday morning to check in for surgery. The staff at Hopkins were professional and comforting. They put me in pre op where they did their thing like starting an IV and had me sign last minute waivers. My family was allowed back to wish me luck prior to surgery. They took me into an operating room where the last thing I remember was taking 4 deep breaths into an oxygen mask. Next thing I knew I woke up in a groggy state of mind in the recovery room. I remember the first thing I asked is if everything went ok. They assured me everything was ok and there were no complications. The surgery lasted approximately two hours. I remember feeling some pain but I was still sedated and zoned out so it was pretty manageable. We waited in recovery for a few hours until they transferred me into my own hospital room for a night. Once they got me settled into my own room, I began feeling the pain get worse. Mostly in my upper arm, shoulder and chest area. It made sense because the nerve blocker they injected me with prior to surgery was wearing off as well as some of the pain meds. I was hooked up to a machine which would release medicine into my iv every time I hit the button (once every 15 minutes was the limit). The first night was pretty rough but the staff did a good job of helping me manage my pain. I got very little sleep that night and the doctor came in the next morning to remove my drain and examine my incision. All seemed well so they released me from the hospital. Off to the hotel we went where I was to recover for 3 more LONG days before I was allowed to fly home. The ride back to the hotel was very painful as I felt every crack, bump, and stop in the road. As soon as I got in, my wife got me settled into bed and I took my pain and nausea meds. I was in bed for a solid day and a half. I propped some pillows up and had to lay on my back with my arm propped up on another pillow next to me. I slept on and off but never got more than an hour two of sleep at a time the first couple of days. The best advice I can give is to make sure to take your pain meds on time as directed. I made the mistake of trying to spread it out longer than directed and it didn't go so well. Do not try and tough it out for the first 3 days. Now I am on day 4 and blogging from an airplane as I fly back to Georgia. I was able to get out yesterday and walk around but was tired and sore by late afternoon. Here on day 4 I am still very sore but I am managing the pain. I was not sure what to expect as it seems like everyone had different experiences. I am starting to spread out the time of my pain meds and taking the minimum dose. The goal is to be off of them by Thursday or Friday which will be one week since surgery. Sitting here on day 4 the best way to describe the way I feel is sore and more tired than usual. I also have been having a low grade fever which has concerned me but the doctor told me not to worry about it for now but to keep an eye on it. I am anxious to get back to work and begin physical therapy. We will see how it goes but my goal right now is to return to work (light duty) next Tuesday which will be 11 days post op. This is assuming there are not any complications and that I am off the pain medication. I hope this gives some of you some insight on what I went through during my TOS experience.

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