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Thread: A hello, rant, & some questions

  1. #1
    Join Date
    Dec 2004
    Posts
    2

    A hello, rant, & some questions

    Hi everyone,

    My name's michelle, I'm 18 & from Australia. I am in a wheelchair due to Spina Bifida, & have had scoliosis since a very young age. For some odd reason I had a brace but was never really pushed into actually wearing it. Had first surgery when I was 12 (1999), to fuse/rod most of my back. This was a bit of a disaster, first with being given water to drink soon after surgery (only meant to be Gatorade apparently), which could have made my spinal cord swell & get damaged, or even my brain (which could have killed me); the epidural was in a wrong spot, so was giving me no pain relief, although did kindly leave part of my back & chest numb; they also stuffed up with rolling me, kicking me out of ICU against my doctors wishes, & discharging me to go home 350km away when in reality I wasn't even meant to be out of hospital for another week, let alone travelling!! For the next couple of months I was on high doses of liquid morphine, with ondanzatron (a really strong drug for stopping vomiting/nausea in chemotherapy patients), neither of which worked particularly well.

    In 2001 had to have them extended into my pelvis. This was not such a bad experience as the last surgery because the epidural gave me a little relief, although it was still very painful.

    Now, just yesterday my orthopaedic surgeon who has operated on my legs & feet performed a moving x-ray. He tells me that I am one of the "rare lucky ones" who continued to experience spinal growth, & as a result I need to have the whole dang lot replaced - soon. 3rd major surgery in 5 yrs. NOT a happy camper He is writing to my spinal orthopaedic surgeon, & I will soon have an appointment with him (hopefully).

    So....I am wondering if anybody has experienced this growth after their surgery, & had successful correction of it? Is it very rare? My leg/foot orthopod said something about there having been advances in rods since I had the harringtons put in - can anybody tell me anything about these & how successful they are?? Also (slightly off-topic), someone I met in hospital a few years back had been in to get rods right up into her neck. The idea freaked me right out & I had never heard of it before, but is this common? I suffer from a lot of neck pain - someone please tell me scoliosis doesn't affect the neck please?!

    I'm so completely scared to be going through this again, & have had it with being in hospitals, with having major surgery (not just scoliosis related), & with all the risks that come along with it - frightened every time I go into the theatre that I will die on the table or even worse, come out in even worse shape than I already am. And that this time will be as horrible or worse than the first time.

    Anyways, thanks a million for reading this very long, boring & jumbled post, I hope it is understandable. Sorry for whinging, I'm just so glad I have found some people who might understand & be able to give me some answers. Goodluck to everybody else here having surgery.

    michelle.
    Last edited by Untouchable; 12-01-2004 at 01:49 AM.

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    That is quite a story :-/. No need to apologise about ranting, it can be a very helpful thing. And even though people can only "read" and offer advice, it is nice to kno that people are "listening" and care.

    I did have one question, are you sure that they're Harrington Rods??, I thought that Harrington Rods stopped being used in the late 80's / early 90's. My fusion surgery as in 1999 also and in Australia and I kno that they didn't use Harrington Rods.

    I think you can get scoliosis in the neck, I'm not sure if its actually called scoliosis, torticoliosis comes to mind, but once again I'm not 100 percent sure :-)

    Best luck and feel free to rant, there's lots of people here to listen and give advice and support

    Alison

  3. #3
    Join Date
    Dec 2004
    Posts
    2
    Hi Alison, thanks for replying so fast.

    Yes, I'm about 99% sure they are harrington rods, although I'm not sure why he would have used them if they're not very good...

    Anyways my brain's kinda gone numb & blank so I don't remember what else I was going to write lol.

    Thanks again,
    michelle.

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