On being a 'special' patient with a 'special illness'

I have release papers from Concord Repat Hospital which say L’Hermittes Duclos Disease with Excessive Brain Debris; basically it means I am a tad special. I have never met anyone else that had the same and I would love to find other survivors, but alas as well as being a tad special, I am also quite the dinosaur when it comes to technology and tracking information is beyond me.

I remember it took the medical profession six months to discover what was wrong with me. I am pretty sure I had every test known to mankind. I was diagnosed with that many different things as every doctor, every specialist and every hospital had a different opinion. I remember being told by a “so called” specialist at Lidcombe Hospital that I had brain cancer and I had six weeks to live. They sent me home with a death sentence and 200 digesic tablets. I took the tablets within three weeks basically because I’d had enough and didn’t care anymore. I then got double vision and a really bad virus so my mother insisted I go to the doctor. I didn’t see the point but I went anyway, mainly so she didn’t nag me to death.

I remember that doctor, he was Chinese. He picked up from my extreme squinting and inability to focus on him that something other than a virus was wrong with me. I laid down, he spent the next 10 minutes examining me then said, “You no got blain cancer, you got blain tumour”! I was taken from the surgery to Concord Repatriation Hospital. I had the first surgery the next day to insert a brain shunt to release pressure, because the tumours had eaten away all my natural drainage system and my brain was squashed to the back of my head. If i had not had the first surgery when I did, I would not have been alive to have the second. The next surgery was one week later to remove all the tumours and debris. I wasn’t expected to be able to lift my head off the pillow for four weeks but I remember waking up in ICU sitting up eating an apple and having a coffee. Seven days later I was home bald and beautiful, and so very grateful that I would see my boys grow up. It took me about three years to fully recover.

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It left me with a very dodgy long term memory but what memories are there are very defined however most of it is gone forever. I also have poor concentration and if I read a book I get to page 10 and can’t remember page 9, but that also has its advantages as I can buy myself a magazine, read it, then put it in an obscure place and after a while when I find it again! It’s a bit like a win. I also I lost 15 per cent of my left side but nobody notices because I have always stayed reasonably fit.

The shunt blocks occasionally and there is a bolt that sticks out the side of my head. The reservoir is just below it and a severe lingering headache is a good indication the shunt is blocked. I just have to remember to massage the reservoir, and it releases. Nowadays they do the shunt operation on unborn babies through the Mum’s tummy. I was lucky they found my problems when I was grown. When children need a shunt they need yearly surgery to lengthen it to accommodate growth. So when you think about it I was lucky!

Tell us, have you ever had a medical problem that took a while to be diagnosed properly?