Hi everyone, this is Breehan!
For this neuro-related blog, I wanted to focus on an usual neurological disorder known as Thoracic Outlet Syndrome (TOS), explained well in a 2015 article from the journal Vascular Medicine by well-known TOS surgeon Dr. Ying Wei Lum.
TOS is when the brachial plexus and/or the subclavian veins and arteries that are proximal to the plexus, near the collarbone, are compressed by one or more structures that make up the thoracic outlet.
The compression is usually caused by a “cervical rib,” an elongated transverse process that generally comes from C7. The extra rib can fuse with the first rib, which then causes compression. The scalenes and subclavius muscle can become spastic hypertrophied, and fibrous, further contributing to the compression. In addition, the pec minor, levator scapulae, and rhomboid can develop spasms and fibrotic tissue.
TOS can be caused by a past history of acute trauma or chronic repetitive movement.
The reason I am interested in this particular disorder is because I am afflicted with TOS. I have the “extra rib” coming off of C7 on my right side. I present with the classic symptoms of TOS—Constant severe pain in my neck, clavicle, cervicogenic migraines from the tight scalenes, and cervical dystonia from the spasms. The vascular symptoms in my right arm due to the compression of the subclavian artery cause my right radial pulse to completely disappear when I use my right arm and it often feels cold, fatigued and achy, like any patient with intermittent claudication in their legs. Mine just happens to be in my arm.
According to Lum, I am at risk for clots and aneurysms in my arm, which requires me to avoid using my right arm too extensively and watch for symptoms of one. If I were to get a clot, I would need emergency treatment, thrombolysis and need anticoagulants until I am able to have surgery, which I am going to have next month at UCLA with a vascular surgeon.
I followed Lum’s recommendations for my treatment, starting with physical therapy to correct my hunched over posture, which worsened my TOS pain and Botox injections to help relax the spastic muscles. When these conservative therapies failed and the TOS pain and dysfunction worsened, the neurologist I was seeing recommended surgery.
The decompression surgery I will have next month at UCLA is the same one Dr. Lum performs at Johns Hopkins. The surgeon resects the “extra” rib plus the first rib, both of which are causing the compression. He then partially removes some of the hypertrophied spastic scalene muscles. This should enlarge the thoracic outlet and eliminate most of my symptoms.
Lum notes that there is no real cure for TOS, only treatments to put it into a remission of sorts. While my vascular symptoms will be gone, the neurogenic ones causing the severe pain may or may not return.
There are two reasons I wanted to discuss TOS today. First of all, it is rare but not entirely unheard of and it is important that nurses be aware that it is possible to have intermittent claudication as well as clots and aneurysms in an upper extremity. The patients with vascular emergencies will be seen in critical care for these reasons but there is another reason TOS patients seek out the emergency room: Severe, unremitting pain.
TOS is by its nature very hard to treat. It affects me every single hour of every day as I await my surgery. The pain is deep, achy and severe. It is similar to having one of those horrible “charley horse” muscle spasms you may experience in your legs that goes away. Except my pain sticks with me and almost any activity triggers it. Even lying in bed on my affected side causes severe neck and head pain.
Some TOS patients present to the ED looking for help with their pain. Because they “don’t look sick,” TOS tends to affect young, healthy people, these patients are often not taken seriously or worse, treated as drug seeking.
But these are people experiencing very hard to treat neuropathy and must be treated as such and as patient advocates we must believe them when they say their pain is a 10/10. TOS is hard enough to live with as it is, and we nurses can either choose to make their day worse when they come seeking help, or we can be a bright spot while they deal with this very difficult diagnosis.
Lum, Y. (2015). Thoracic Outlet Syndrome. Vascular Medicine, 20(5), 493-495. doi: 10.1177/1358863X15598391
