Thread by @AMaltmanWrites

As #InvisibleDisabilitiesWeek winds down, allow me to explain my condition. #Syringomyelia (sear-in-go-my-eelia) is when fluid-filled cysts form in the centre of the spinal cord, hollowing out the cord and compressing/damaging the spinal cord and nerves in that area.

This cyst is called a syrinx (sear-inks).
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. Mine include widespread pain (including burning, aching, stabbing, pins and needles), difficulty sensing temperature with my hands & feet, muscle cramps & spasms, muscle weakness, & localized numbness

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.

Secondary to the syringomyelia, I have #dysautonomia. My body has trouble regulating heart rate, blood pressure, and temperature.

The chronic pain and inflammation cause chronic fatigue and “brain fog.” My thought processes can be sluggish, my once near-photographic memory is now more like Swiss cheese, I can have trouble finding my words, I’m forgetful, I can have trouble focusing, & often feel spaced-out.

I don’t have any of the usual causes of syringomyelia such as Chiari Malformation of the brain or spinal tumours.

Unfortunately, when I was diagnosed back in 2005, there wasn’t much information available out there. I made the mistake of trusting the 1st neurosurgeon I saw.

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 (my neck) would cause that syrinx to collapse. My thoracic is too narrow for surgery.

He performed a cervical laminectomy and duraplasty. He 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.

That surgery failed. My syrinx remained unchanged. Because I continued to deteriorate, 16 months later he did the surgery he should have done in the 1st place. He made an incision into my cord & inserted tubing to act as a shunt and drain the syrinx. It’s stitched into place.

My neck syrinx did collapse, but all the damage it caused is permanent.
The combination of the syringomyelia and the surgeries gives me a constant daily headache similar to a migraine. My neck, shoulder, & 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 constant occipital neuralgia.

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.

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.

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