Introduction

In 2005, I was diagnosed with a rare spinal cord disease called Syringo Myelia (SM). From the ASAP website:

What is syringomyelia?

(sear-IN-go-my-EEL-ya)
Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. For reasons that are only now being understood, cerebrospinal fluid enters the spinal cord, forming a cavity known as a syrinx. (Doctors sometimes use other words such as cyst, hydromyelia or syringohydromyelia) This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

Syringo Myelia (SM) has presented a number of challenges already:

1. Getting a diagnosis is very difficult. My Primary Care Physician (PCM), Dr. M, basically told me there was nothing wrong with me and treated me for depression. The symptoms vary quite a bit, and the condition is rare, so few know about it.
   
2. Finding a specialist. Neurosurgeons are the experts when it comes to SM. Finding one who knows the latest research on the condition is not easy. A neurosurgeon is needed to evaluate the condition and see if it can be fixed, and a neurologist is needed for management of the symptoms.
   
3. Seeing a good specialist (neurologist + neurosurgeon). The health care system is difficult to navigate. You need a referral to see a specialist (even if your insurance doesn't require it). My neurologist, Dr. Y in Seattle, has actually refused to refer me to a new neurologist in Portland. Today OHSU neurology told me that a referral from my primary doctor (PCP) would probably not be good enough. Some medical staffers are courteous and professional (e.g. Dr. M's office), others can be downright rude and unhelpful (e.g. Dr. Y's office).
4. I haven't made it past step 3. yet, because I've been getting the run-around from doctors for the last month. Good thing I pay $350 /mo. for health insurance!
   

Syringomyelia (SM) is a serious condition. It typically causes chronic severe pain, numbness, loss of sensation. It can also cause paralysis, stabbing chest pains, eye problems, crippling muscle spacticity, and joint damage. Knowing that, you'd think doctors and their staff would take you seriously. You'd think.

This blog is a way for me to vent about some of the bullshit I go through as I try to find good healthcare for this rare condition. I hope to spread awareness and urge the beaucratic health care system to refocus on the patient.