Quite a mouthful isn’t it? No wonder they have an acronym!
So basically, this is my disability.
This is why I use baking as therapy, and why it takes me longer than an able bodied person to produce my cakey creations!
It’s a complicated diagnosis and one that I didn’t fit the demographic for, or the NICE guidelines if you’re in the UK.
It took a fall in 2012 to bring it to light and even then I was treated for whiplash for 5 months before insisting on an MRI.
When the results came back I was hospitalised immediately, and surgery to relieve severe cervical spinal cord compression was performed. This surgery was called cervical laminoplasty and if done early enough, the damaged nerves can fully recover, although it can take up to two years!
In my case, the delay meant I had irreversible nerve damage and some atrophy of my spinal cord. However it did stop the compression getting any worse. Unfortunately I did suffer a side effect during surgery which left me with palsy in my right arm. This was very severe at first but after almost a year of physio therapy, I got most of the feeling back, but there is still some numbness and weakness there.
After two years, when it became obvious that my symptoms weren’t going to improve I had further surgery to implant a device called a spinal cord stimulator. This could either be positioned to help mask the pain in my lower body, or my upper body but not both. I chose lower body to help with pain in my legs. I thought it was more important to be able to walk, even short distances and with walking aids! The alternative being a wheelchair. I do use a wheelchair for longer distances on days out for instance, but I don’t like it!
In my case the ossification was continuous from C2 – C6. In hindsight I had been having symptoms for years but they had been diagnosed as all sorts of things from bursitis to carpal tunnel syndrome. Before the fall my symptoms mainly affected my upper body. Altered sensations in my hands, electric shock type pain on extension etc. But after the fall, my legs began to be affected. Burning pain similar to a sunburn was particularly troublesome in the soles of my feet at first, but over a few weeks travelled upwards. I was having physio at the time and as this symptom didn’t fit with the whiplash diagnosis I persuaded him to refer me for the MRI.
Please feel free to ask me about my coping mechanisms by leaving a message in the comments box 😀
Cervical laminoplasty https://www.columbiaspine.org/treatments/cervical-laminoplasty/