Untouchable
12-01-2004, 12:37 AM
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 :p 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.
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 :p 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.