My Experience with Thoracic Outlet Syndrome

Well I'm down to 23 ribs...

     In 2010, my entire right arm started to swell. I went to the Doctor and initially was prescribed antibiotics for MRSA. I had been paint-balling 2 days prior to the incident and had a few open wounds that were potentially infected. The Doctor said to follow up in a few days if I did not improve. My arm continued to swell and became even worse with activity. At the second visit, I was told to go to the hospital to get a venous doppler for a suspect DVT. 
     The doppler revealed a ~4 inch blood clot in my subclavian vein. I was immediately admitted to the ER, placed on blood thinners, and underwent a surgical procedure to remove the clot. Following a 3 days hospital stay, I was diagnosed with Thoracic Outlet Syndrome (TOS) and sent to a specialist at Barnes-Jewish in St. Louis. Fortunately the vascular surgeon I met with, Dr. Thompson, is one of the national leaders in TOS. After a long discussion on the pathology, we discussed treatment options. Due to the severe fibrosis of my subclavian vein, Dr. Thompson highly recommended a first rib resection to open the thoracic outlet space. Additionally, he would perform a vein graft on my subclavian vein.* Other treatment options would have been conservative and severely limited my activity level in the future. Although my case did not allow for this, other treatments include a pectoralis minor release or scalene release.

---

    After several weeks of no activity and giving myself Lovenox injections, I underwent surgery. The surgical procedure took almost 11 hours. The doctors performed a first rib resection, vein graft, and AV fistula at my right forearm.** Because the anterior and middle scalene attach to the first rib, they removed both of these muscles as well. The following 12 weeks were devoted to physical therapy and rehabilitation. Many of the exercises I performed were for scapular stabilization, postural education, and core strength training.

Collaterals!

At 10 weeks post-operatively I returned to have my AV fistula reversed. During this procedure they performed another Doppler that revealed the subclavian vein graft did not take. This was not a huge problem, but because of this I have some residual swelling in my right arm. My collateral veins now have to compensate because I do not have a working subclavian vein. 

First Rib Resection Scar

AV Fistula Scar

So why did this happen to me?
Growing up I was always involved in athletics, specifically sports that involved overhead activities (mainly swimming and water polo). In addition to practice, I would supplement my training in the weight room. With only limited knowledge of training at the time, I excessively worked my mirror muscles (pectoralis major, biceps, rectus abdominus). This rounded shoulder posture coupled with overhead motion, significantly reduced the space in my thoracic outlet, specifically between my clavicle and first rib. 

Things to consider with future patients?
Thoracic outlet syndrome can be a compromise of any portion of the neurovascular bundle in the thoracic outlet. I should note that I was completely asymptomatic prior to the day when my arm swelled up. While I presented with Venous TOS, >95% of cases are neurogenic. For vascular TOS, common initial symptoms can include a loss of pulse, arm swelling,  cyanosis, and a "cool limb." With neurogenic TOS, patients will complain of paresthesias in the entire hand. This may vary depending on the exact location of compression. Common examination tests include: Roos Test, Costoclavicular brace test, and the Hyperabduction test (Check out our TOS tests page for more information).

If anyone has any comments or questions, feel free to write below or email me at jheafner@slu.edu. 

                    -Jim 

*Previously vein grafts were taken from another vein in your body (often the saphenous-- the vein had to be double sutured over to size appropriately as the subclavian), but Barnes-Jewish had a "vein bank" where they harvested veins from stem cells. 
**The fistula rerouted my artery and vein at my distal forearm to circulate the blood ~10 faster back to my heart to reduce the risk of a subsequent clot. Ten weeks after this surgery, I had a second small procedure to reverse the fistula and return normal blood flow. 

Reference: 
Sanders RJ, Hammond SL, Rao NM. Thoracic outlet syndrome: a review. The neurologist. Nov 2008;14(6):365-373