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Hi everyone, I'm Tanya from the UK. It's my first post so please be gentle 
.
I will try to keep this brief but I fear I may rattle on a little bit... Its quite complicated. (I'll apologise now for any terrible typos... I'm using my phone)
In 2002 I was diagnosed with idiopathic scoli at 12 years old. It was pointed out by my danci.g coach who noticed I wasn't completely symmetrical, so we went through all of the routes ad saw the spinal surgeons at queens medical centre nottingham. My curve was about 45 degree with a compensatory lumbar curve about 30. It was monitored over the next few years and by Dec 2008 it had progressed to 63 and 40, so we decided to operate. In the meantime I had been in regular pain being controlled with ibuprofen and tramadol.
Fast forward to May 2009 and they operated from T4 to T12 sticking in 2 rods and 13 screws. The surgery was mostly straight forward apart from failing monitoring equipment and a dural tear. wake up test was performed and everything was fine. I was in intensive care for 4 days and then moved to HDU for a further 2 before being moved to the spinal ward. Recovery was slow but within 4 months I was almost normal again apart from horrendous pain, but we were told it was just surgical pain. Then in October 09 I had a fall down the stairs (we now know it was caused by an unrelated neuro condition- now in a wheelchair). Xrays were done as was a ct and MRI, everything seemed ok.
Whilst investigating the neuro condition the hospital decided to take out 2 screws from T9 and T12 as they appeared to be within the canal... When they went in, they werent in the canal. Since the surgery I have been on a daily dose of morphine, nefopam and Diazepam... I can no longer take NSAIDS.
So, more about they pain... The pain is along my upper spine, near the top of my scar but slightly to the right (about 1inch) and nothing in particular triggers it. The only thing that seems to bear an effect on causing the pain is when I use my right arm or shrug my shoulders. If I lean over absent mindedly to reach a cup or try to roll over, reach forward with my arm and not my whole body, if I round my back etc etc... To be honest, the list goes on.
I have spoken to pain consultants, their view is to up the morphine more and more (im now on 360mg slow release plus 10ml of liquid every 2hrs plus 10mg of diazepam up to 3 times a day and 60mg of nefopam 3 times a day!!!) It's really getting beyond a joke. I am a zombie most of the time, which isn't handy at the best of times, but especially when studying for a degree.
Another option was to have a steriodal epidural, which would have to be high up. All of the other medical people I ha e spoken to have seriously advised against this, so I really don't think i want to risk it.
The pain is a funny one to describe unless you have experienced it (I'm secretly hoping someone has so they understand what I mean). It is almost like my muscles have been caught in a zip, which triggers a spasm. Without sounding too melodramatic, it sort of feels like something is getting stuck on the top of my right rod (I know its probably ridiculous, but that's the best way I know how to explain it). I've requested to see a surgeon (a new one, my old one has left) for some investigations as I feel a bit let down as no one seems to be listening. I may not be a doctor, but I know my own body and when things aren't right.
I really want them to take the rods out, I really feel like it is them causing the problem. Can someone please help, I'm so down about the whole thing now.
.I will try to keep this brief but I fear I may rattle on a little bit... Its quite complicated. (I'll apologise now for any terrible typos... I'm using my phone)
In 2002 I was diagnosed with idiopathic scoli at 12 years old. It was pointed out by my danci.g coach who noticed I wasn't completely symmetrical, so we went through all of the routes ad saw the spinal surgeons at queens medical centre nottingham. My curve was about 45 degree with a compensatory lumbar curve about 30. It was monitored over the next few years and by Dec 2008 it had progressed to 63 and 40, so we decided to operate. In the meantime I had been in regular pain being controlled with ibuprofen and tramadol.
Fast forward to May 2009 and they operated from T4 to T12 sticking in 2 rods and 13 screws. The surgery was mostly straight forward apart from failing monitoring equipment and a dural tear. wake up test was performed and everything was fine. I was in intensive care for 4 days and then moved to HDU for a further 2 before being moved to the spinal ward. Recovery was slow but within 4 months I was almost normal again apart from horrendous pain, but we were told it was just surgical pain. Then in October 09 I had a fall down the stairs (we now know it was caused by an unrelated neuro condition- now in a wheelchair). Xrays were done as was a ct and MRI, everything seemed ok.
Whilst investigating the neuro condition the hospital decided to take out 2 screws from T9 and T12 as they appeared to be within the canal... When they went in, they werent in the canal. Since the surgery I have been on a daily dose of morphine, nefopam and Diazepam... I can no longer take NSAIDS.
So, more about they pain... The pain is along my upper spine, near the top of my scar but slightly to the right (about 1inch) and nothing in particular triggers it. The only thing that seems to bear an effect on causing the pain is when I use my right arm or shrug my shoulders. If I lean over absent mindedly to reach a cup or try to roll over, reach forward with my arm and not my whole body, if I round my back etc etc... To be honest, the list goes on.
I have spoken to pain consultants, their view is to up the morphine more and more (im now on 360mg slow release plus 10ml of liquid every 2hrs plus 10mg of diazepam up to 3 times a day and 60mg of nefopam 3 times a day!!!) It's really getting beyond a joke. I am a zombie most of the time, which isn't handy at the best of times, but especially when studying for a degree.
Another option was to have a steriodal epidural, which would have to be high up. All of the other medical people I ha e spoken to have seriously advised against this, so I really don't think i want to risk it.
The pain is a funny one to describe unless you have experienced it (I'm secretly hoping someone has so they understand what I mean). It is almost like my muscles have been caught in a zip, which triggers a spasm. Without sounding too melodramatic, it sort of feels like something is getting stuck on the top of my right rod (I know its probably ridiculous, but that's the best way I know how to explain it). I've requested to see a surgeon (a new one, my old one has left) for some investigations as I feel a bit let down as no one seems to be listening. I may not be a doctor, but I know my own body and when things aren't right.
I really want them to take the rods out, I really feel like it is them causing the problem. Can someone please help, I'm so down about the whole thing now.
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