May is #Syringomyelia Awareness month. I’ve probably had it since I was 12 when I woke up and had lost feeling on my right side, but it wasn’t till I was 18 that someone finally agreed to give me an MRI. The doctor at the time was so perplexed he redid all my neurological scans as he couldn’t believe how well I was compared to how bad my spine was.
Syringomyelia is a neurological condition where a fluid-filled cavity (syrinx) occurs in the spinal cord. They don’t quite know why but it’s very common in conditions like Chiari Malformation (which I have), Tethered Cord (I also have), trauma to the spinal cord and a few other things. These cysts expand and put pressure on the nerves running in our spine causing pain mainly in peripheral areas. It can lead to paralysis but chances of this are getting less with increased knowledge. Mine was so big C2-T10 and the width of my cord in most areas it stretched the cord and perforated it in areas. So I’m lucky to be walking and only part-time wheelchair user.
I had the Chiari decompression surgery to help both my Chiari 18.104.22.168 and Syringomyelia. However, it took another surgery for my Syrinx to diminish a lot and the nerve damage is permanent. Which includes a lot of pain which I needed a surgically implanted medical pump which sends medication like morphine to the area around my spinal cord. Sadly some doctors don’t recognise this can be a very painful condition so not everyone is as lucky as me. Interestingly animals can get this too - especially Cavalier King Charles Spaniels and no one doubts their pain. In fact some countries are banning them being bred because so many have it the risk is too high and it’s considered cruel to breed them knowing the pain and neurological problems that do occur.
During May we wear blue to do with our awareness ribbon (blue ribbon with a little drop of CSF). It’s a rare condition with around 22.214.171.124 per 100,000 people having it. So many people are not aware of this very invisible condition. So I am hoping sharing my story and a brief overview of the condition will help people learn it’s name.