On being a ‘special’ patient with a ‘special illness’ 47



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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.

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?

Christine Massey

I am a 61-year-old dysfunctional child of a problem mother. I tend to look at the world with the philosophy "Laugh hard, you could be dead tomorrow!"

  1. Everyone says that you should take the matter further, but dealing with the Legal side of things is just as had if not harder than putting up with being disabled.

    5 REPLY
    • My mother tried to sue,but hospitals have a bizarre clause,and because it was so rare,we did not have a leg to stand on,just like when I had a thyroid op,the surgeon took my parathyroids out by mistake which through me into calcium shock and an extra 4 days in hospital….There was a woman in the next ward with the same name due to get her parathyroids out…”Bizarre”…Ten years ago I was diagnosed with melanoma on the brain and given 3 months,They left me like that for 3 days before they told me it was a mistake…”Bizarre”….I could write a book on medical stuff ups….,Christine (Massey)

    • Christine Meehan I know what you mean I had a knee replacement and had a knee for someone about 5 ft 2 put into my leg and I was 5 ft. 9 ins. Starting to shrink now. Because of this Doctor I have now had 5 right knees if you count mu own.

    • There ARE medical complaints tribunals. Even from the simple explanations you have both given here, there seems obvious incidences of malpractice.

    • My mother tried when I was younger,I tried every avenue possible when they stuffed up my throat,I was told because the other woman was in at the same time with the same blood group,same name,same birth year….the “bizarre” clause would be the hospitals escape

  2. My husband had bowel cancer, he had scans to let us see if it had spread to his liver. The doctor said no his liver was clear. We were relieved.
    We went to Brisbane 4 weeks later to see the Oncologist, he ordered more scans, my husband had 6 tumours in his liver one quite large. He died 15 months later.

    1 REPLY
  3. My Step Father had a pain in his chest , an ambulance was called and he was taken to hospital, when they arrived there he was told the emergency room was full and he could not be seen today, and told to come back tomorrow. He went back home and died that night

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  4. Yes my doctor waited a year before sending me for an x-ray of my lower leg which had a noticeable tumour on it, I insisted on an x-ray, had I not had it a osteo-carcinoma wouldn’t have been detected and I would have been six foot under once it had taken off as it is a fast and silent killer, had my leg amputated, changed doctors and now 30 years later still going strong.

    2 REPLY
    • When I was in my thirties,I had a black pin head sized spot just below my left knee,my gut instinct told me it was bad,the doctor said I was paranoid,I demanded he take it off,it was a level 3 malignant melanoma,further surgery three days later…Maybe I should start a Medical Stuff Up’s Page..Glad that you are well.x (Christine Massey)

  5. I asked a doctor about a mole on my back , he told me it was fine and not to worry about it . Luckily I got a second opinion , and he was shocked by the other Doctors response , and quickly made to remove it . When I went back for the results I was told I was very lucky , it was just becoming cancerous …..

  6. What an incredible story, thank goodness for the right diagnosis by the Chinese doctor. We have to keep asking the right questions and go with our gut instincts that something is more wrong with us and get 2nd and 3rd opinions.

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  7. My husband was told he had “piles” after a slight show of blood. Six months later, after another show of blood, he was diagnosed with advanced bowel cancer. Do not trust your GP, trust your own instincts and insist on seeing a specialist at any sign of blood.

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  8. My stroke was diagnosed as vertigo or an infection even though unable to walk or talk properly when the ambulance took me to hospital . It took a couple of weeks of tests everywhere until finally a doc insisted on an MRI which showed extensive damage to my brain .

  9. Not as serious as some but my broken ankle was supposedly gout. I walked on it for three weeks before an x-Ray. Never saw that “doctor” again

    1 REPLY

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