When Your Diagnosis Status Is 'It's Complicated'

We’ve all seen it on social media. Our friend updates their relationship status to “it’s complicated.” They even made a movie with its title. But what does “it’s complicated” mean? It could mean it’s too difficult to explain. It could mean there are a lot of layers to unravel. It could mean there isn’t a clear cut response. It could mean, “let’s get coffee and talk about it.”

The same can be true for a diagnosis that comes with complications. It could mean it’s so rare it’s difficult to understand. It could mean your diagnosis isn’t the same as the average person with the same symptoms. It could mean having other diagnoses creates a lot of layers to unravel to uncover how the symptoms may affect you. It could mean the diagnosis isn’t as clear cut with a direct path for treatment. It could mean the traditional treatment options may or may not benefit you.

When I received my second diagnosis of neurogenic thoracic outlet syndrome, it came with the label “with complications.” Those two extra words added a layer on top of what seemed like a clear cut diagnosis.

According to the Mayo Clinic, neurogenic thoracic outlet syndrome “occur[s] when blood vessels or nerves in the space between your collarbone and your first rib are compressed.” For me, this caused pain in my neck, across my shoulders and down my back where the nerve blockage caused damage. In addition, I experienced tingling and numbness in my hands as a result of the blocked blood flow. Finally, when doing activities where I was reaching above my head, I would experience episodes of lightheadedness and falls due to the blood flow restrictions.

Seems pretty clear cut, but what makes it “with complications” is my underlying diagnosis of mal de debarquement syndrome (MdDS), a neurological disorder that leaves me feeling as if I’m in constant motion. My symptoms of MdDS include the constant feeling of rocking, pain in my neck and shoulders, change of gait to compensate for the rocking (resulting in pain through my lower back and hips), nausea, falls, brain fog and fatigue.

In addition, my “with complications” was added to my diagnosis because commonly, with neurogenic thoracic outlet syndrome (TOS) there is a correlation between an event such as an injury, an accident, pregnancy or sudden weight gain that triggers the symptoms. I had none. Also, neurogenic thoracic outlet syndrome typically impacts either your right or left arm. I have bilateral or it impacts both arms. Finally, there is little explanation for the lightheadedness and falls whose onset began with the TOS diagnosis.

Pile these all on top of each other and you have someone with complications. It’s difficult to explain why I have it. It’s difficult to know what treatment measures will work. It’s difficult to know where the mal de debarquement syndrome symptoms end and the neurogenic thoracic outlet syndrome symptoms begin.

For someone who has hit the “rare disease lottery” (my doctor’s words, not mine), it seems “with complications” may be added to any additional diagnosis. Even something as simple as a head cold can be complicated because of the impact it has on my underlying diagnosis.

I can try to make sense of it, but instead maybe I’ll just have another cup of coffee.