You have Sir Ringo what?

If you follow me on Twitter, you'll often read tweets about my pain. What pain, you ask? How bad is it? Will it get better? 

I have a condition called syringomyelia (sear-in-go-my-eel-ee-a). Cysts filled with cerebrospinal fluid (CSF) formed in the centre of my spinal cord, hollowing out the cord and compressing/damaging the spinal cord and nerves in that area. This type of cyst is called a syrinx (sear-inks).

Normally, your spinal cord is solid except for a very narrow channel that runs the length of its centre (the central canal). Imagine sticking a fine needle down the centre of a hot dog. That's normal. With syringomyelia, CSF builds up in the central canal as if you've injected a bubble of water into the hot dog and it gets trapped in there. Now imagine that hot dog is surrounded by a rock-solid bun (the vertebrae). As the pressure from the water bubble builds up and the bubble keeps growing, the "tissue" of the hot dog gets squeezed tighter and tighter against the inside of the bun.

These are my MRI images from 2005/6, after my first surgery but before my second. I have two syrinxes: the wider from the 4th cervical vertebra to the 1st thoracic, and the narrower from my 2nd thoracic to the 11th (C4-T1 and T2-T11).

 

 

 

 

 

 

Syringomyelia causes a variety of symptoms that can vary from person to person, and the size of the syrinx doesn't necessarily correspond to the severity of the symptoms. Mine include: widespread pain (including burning, aching, stabbing, pins and needles), difficulty sensing temperature with my hands and feet, muscle cramps and spasms, muscle weakness, twitching/fasciculating muscles (large and small), and localized numbness. My arms and legs tire quickly. I also have digestion issues and what’s called a neurogenic bladder. I’ll let you look that one up. 😉 My worst symptom is my 24/7/365 headache and neck pain. I've also developed degenerative disc disease, particularly in my neck.

 

My body aches like I have the flu every single day. It constantly feels like someone has taken a club to the back of my head, where the skull and the neck meet, and like liquid fire is spreading across my scalp. The 'hit your funny bone' feeling zings up and down my arms right into the tips of my baby fingers. Some days are worse than others, but it's always there and I can't always predict what is going to make the pain worse and send my symptoms into a flare-up.

Secondary to the syringomyelia, I have dysautonomia. My autonomic nervous system is glitchy, meaning my body has trouble regulating heart rate, blood pressure, and temperature.

 

 

 

The chronic pain and inflammation cause chronic fatigue and "brain fog." Whether I've slept for two hours or twelve, I'm exhausted, and that exhaustion never goes away. My thought processes can be sluggish, my once near-photographic memory has become more like Swiss cheese, I can have trouble finding my words, I'm forgetful, I can have trouble focusing, and I often feel spaced-out.

 

Unfortunately, there wasn’t much information available out there when I was diagnosed in 2005 and I made the mistake of trusting the first neurosurgeon I saw. I believe he essentially used me as a guinea pig. He told me that my syringomyelia was caused by my cord not having enough room in my spine and that decompressing the area around the wider syrinx (the one in my neck) would cause that syrinx to collapse. (My thoracic syrinx is too narrow for surgery.) He performed a cervical laminectomy and duraplasty. That is, he permanently removed the back part of my neck vertebrae to expose my cord, sliced along the sheath surrounding my cord, and stitched an extra piece of tissue in place.

These are more images of my neck.

 

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That surgery failed. My syrinx remained unchanged. Because I continued to deteriorate, he did the surgery he should have done in the first place sixteen months later. He made an incision into my cord and inserted pediatric cardiac tubes to act as a shunt and drain the syrinx. They're stitched into place. One runs up along the centre of my cord and the other down. My neck syrinx did collapse, but all the damage it caused is permanent.

With the structure of my spine destroyed from the first surgery, my neck, shoulder, and upper back muscles have to work extra hard to hold my head up and turn it. The muscles ache and burn constantly and frequently spasm and become knotted up. I also have occipital neuralgia, which is what causes the liquid fire pain that I mentioned above (see the graphic below). 

 

The worst things I can do for my neck are to look down, look up, and perform repetitive arm motions. I have a list of other restrictions. No heavy lifting (one doctor said five pounds and another ten). No straining (anything that increases pressure in the abdomen can cause more CSF to enter the syrinxes--even straining due to constipation is dangerous). Nothing with impact (I used to love running) or jarring (I used to ride horses competitively). Nothing with sudden changes in direction (no roller coasters, the only plus to this whole thing). 

All of my symptoms are permanent. I continue to deteriorate, although more slowly than I would have if I hadn’t had the shunt surgery.

 

 

 

I lost my career as a pharmacist after less than four years of practice. I can no longer ride horses, which was my passion. Heck, I can't even groom them or do barn chores--grooming my small dogs and cleaning litter boxes both cause intense pain. I had to rule out having children (too much strain on my body from the excess weight, plus I could never care for a child given all my limitations, the fatigue, etc.). I used to be extremely active with working out, running, lifting weights. That's all forbidden now. I can ride a recumbent bike and (on a good day) walk. That's about it.

 

There are people, even within my own family, who believe I am faking and/or exaggerating. That there's no way I can be in as much pain as I say I am. That I should be working. To them I say, why would I choose this? Why would I go to university for nine years if all I wanted to do was sit at home? Why would I voluntarily give up a six-figure income and the benefit plan that went with it? That's right. I, a former pharmacist, don't even have drug coverage anymore (or dental, or vision, or any other kind of coverage). Thanks, Rexall. Why would I pretend to have something wrong with me that has taken nearly everything from me? Just because you can't see and/or understand my pain doesn't mean it's not real.  

If you were to see me in person, you wouldn’t know any of this was going on. Except for my giant scar and a slight limp, I look fine. Strangers even glare at me for using disabled parking. So next time you see a “faker,” think of me. Not all disabilities are visible.