rare & invisible

---

It was now October 15, 2019. The appointment to review my MRI report and images. Ever since the last one I was eager to understand the truth behind my pain. The MRI itself just made me more anxious. Since it was focused on my cervical spine, I had to lay on the table in a head cage. Staying still for long periods of time was impossible for my neck and shoulder. They needed to give me muscle relaxants in order to ease my slight claustrophobia in the head cage. I had to stay oh so still for 30 mins as the machine caught all angles needed.

Flash forward to 11/12/19 and I was back with Dr. Riedel reviewing the MRI images. He read off the report: "straightening of the cervical spine possibly related to muscle spasms/strain. multilevel degenerative disc disease without significant spinal canal stenosis and neural foraminal narrowing" Okay so no wonder my neck hurt so damn much. I had lost the natural curve of the cervical spine. Dr. Riedel grew more concerned about the tenderness about inflammation surrounding my neck/ shoulder and arm. So he decided to ask another surgeon, Dr. Wongworat (my first dr if you remember ) for his opinion. In the meantime, more anti-inflammatories, more gabapentin, and physical therapy. On 11/20/19 I saw Dr. W. He examined my wrist and elbow first. He wanted to ensure that they both continued to show signs of stability and recovery. He mainly noted that both were indeed stable but had an increased numbness/loss of sensation around both scars and my fingers. Then he moved to my neck and shoulder. I could barely tolerate any pressure on my right trap and its surrounding areas. "Hmmm, I'm noticing a pattern of tenderness and irritation around the brachial plexus. A common issue for those who have something called thoracic outlet syndrome. Which does tend to be very rare. You need to see a thoracic surgeon for a proper diagnosis. For now, continue with massage therapy, strengthening exercises, and pain management. Ask pain management for a referral for someone for you to see"

I went home and the first thing I did was finally do some research on whatever the hell thoracic outlet syndrome is. I wanted to be prepared with a list of questions for my next appointment. This is what I found (thanks to MayoClinic) : "Thoracic outlet syndrome (TOS) is a group of disorders that occur when blood vessels or nerves in the space between your collarbone and your first rib (thoracic outlet) are compressed. This can cause shoulder and neck pain and numbness in your fingers. Common causes of thoracic outlet syndrome include physical trauma from a car accident, repetitive injuries from job- or sports-related activities, certain anatomical defects (such as having an extra rib), and pregnancy." The next thing I did was look at which criteria fit best. No car accident, no pregnancy, so that left anatomical defect and a sports-related injury. Well, I guess an X-ray would show anatomical differences. (question 1) Or maybe some other imaging? Another MRI? (question 2) Did the initial injury of my momentum and weight falling onto my extended wrist and shoulder cause the compression?? (question 3). I continued with research.... "There are three general types of thoracic outlet syndrome:

• Neurogenic (neurologic) thoracic outlet syndrome. This most common type of thoracic outlet syndrome is characterized by compression of the brachial plexus. The brachial plexus is a network of nerves that come from your spinal cord and control muscle movements and sensation in your shoulder, arm and hand.

• Venous thoracic outlet syndrome. This type of thoracic outlet syndrome occurs when one or more of the veins under the collarbone (clavicle) are compressed, resulting in blood clots.

• Arterial thoracic outlet syndrome. This is the least common type of TOS. It occurs when one of the arteries under the collarbone is compressed, resulting in bulging of the artery, also known as an aneurysm."

"When nerves are compressed, signs and symptoms of neurogenic thoracic outlet syndrome include:

• Numbness or tingling in your arm or fingers

• Pain or aches in your neck, shoulder, arm or hand

• Weakening grip"

Okay, I think I have neurogenic TOS. How to confirm? (question 4)

Right as I felt prepared for my next appointment with Dr. Cesar, chaos began to erupt around the world. Coronavirus became the main medical emergency. Hospitals were overfilled with people of various ages needing ventilators. It spread very easily and reached the United States at a fast rate. it went from being a scary health phenomenon in Asia to schools across the globe having to shut down and commence "social distancing". In a span of a week, students at the University of Redlands were expected to pack their dorms and move back home to quarantine at home. I felt like it was a real-life version of the movie Contagion.... Okay, going home.... halfway through the second semester. This not only disrupted my academic career but forced me to become my own medical secretary as well. The added stress of having to transfer all my medical records to my home hospital, Stanford, took over my mind. Between packing all my crap from my dorm to hopefully fit inside of Cal's car with all his stuff... I would be on the phone with Loma Linda and Stanford hoping to expedite the process of getting referrals in place to switch my health care team. Why this is all on the patient is beyond me. I had to learn so much about insurance policies and hospital politics. I really wish doctors would just pick up the phone to speak about handing over a case because the reality is that the "interesting pain case" is actually a young woman desperate to find answers to cure her pain. And in the midst of covid.... I became a less urgent medical issue, a case file moving from department to department and hospital to hospital. Regardless of my frustration, I had to get this done within the week. I didn't have a choice, I had to move back to the Bay Area.

After what felt like 3 full days being stuck on the phone... it FINALLY happened. All my medical records were transferred to Stanford. AND I had an appointment with a dr who was familiar with thoracic outlet syndrome. I started to feel more hopeful... I mean, it's Stanford... they should be able to figure out my pain. Cal and I crammed all our stuff into the car and made our way North, back towards home, and hopefully a new chance to be pain-free.