Friday, April 23, 2010

sweating on it

When I was 16 years old, I found out that I was lucky to be alive.

One day, while my orthodontist was examining an x-ray of my teeth, she discovered that I didn't have an odontoid peg. Sounds a bit star-treky doesn't it? In very crude terms, the peg is that thing that your head sits on and rotates around - kind of like the pivot, I suppose. Without it,the whoel thing is very unstable, and can sever the spinal cord, which at that level would more than likely result in death.

Apparently, she called my mum immediately to tell her what she had discovered and urged mum to keep me very still and call the doctor. Mum phoned our GP, who just simply didn't believe it. He said mum must have mis-heard. He said it wasn't possible for someone with no odontoid peg to make it to 16 years of age. So the orthodontist sent the x-rays over to the GP, who immediately called an ambulance for me. From that minute, I wasn't allowed to move my neck at all. I was in a full body brace.

I had a big operation and the surgeons 'built' me a peg out of grafted bone and wire. All fixed.

But then, when I was 22 a tumour formed in the same place on my brain stem. But because of the previous surgery and resultant limitations (movement, headaches etc) I didn't notice anything wrong for a very long time. I thought all the headaches were normal. It wasn't until I woke up one day unable to move the entire right side of my body that I realised something was up.

My spinal cord was compromised. In fact, it was bent into almost an s bend.

Again, I found out I was lucky to be alive.

A 17 hour operation later (involving separating my lower face in half through my mouth, down my throat and up to behind my right ear, and then also through the back of my neck), having a tracheostomy (I've never been so quiet - I had to write on an etcha-sketch!!), wearing a 'halo' for many many many months, and a good strong dose of golden staph needing intravenous antibiotics for 6 months - I was fixed.

And so far so good.

But I am sweating on a call from the orthopaedic surgeon. My condition was congenital, but is it hereditary? Will my boys have it?

Now I understand how my parents must have felt when they learned about my condition.

My fingers are crossed that in my case it was some bizarre DNA muck-up in utero and not a hereditary disorder.

I was supposed to hear back today, but despite phoning again, I've still heard nothing.

I'm hoping no news is good news :) And I'm going to enjoy the looong weekend.


  1. Jen, this is an amazing story.
    I'll be thinking of you until we hear the news.
    I hope you have a wonderful weekend with your family xx

  2. An amazing story- you have a reason to be in this world!

    Hope that you hear from the surgeon soon so you can enjoy your weekend properly.

  3. here's hoping you don't have to relive this with your boys

    much love to you and waiting for the good news

    shan xxx

  4. oh my goodness. i hope that everything is all clear for the boys. xx

  5. Oh my goodness Jen. What a trot you've had... but you're such a trooper.

    I hope the boys don't have it. And I'm sure if they did... you would have heard by now? xx

  6. Thanks for all your kind words ladies. Heard back from the surgeon today (finally!) and these are his exact words, "stop worrying Jen, there is so so little chance that this is hereditary. It would be an extremely rare thing indeed"

    Phew!!!!!!! :)

  7. That is very reassuring Jen and can feel your relief. Big Hug for you & your darlings. Jx


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