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  #1  
Old 6th May 2014, 08:36 PM
mollieruby mollieruby is offline
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Default Cant Move - SURGERY 7 YEARS AGO

I Had Multiple scoliosis surgery 2006 - Plastic surgery 2009.

Some days i can be fine sometimes i cant move for up to 4 days is my longest, my back stiffs up and cant move, sometimes if i sit down it locks and i cant move, ive been to the doctors and gave me painkillers so many tramadol doesnt touch me anymore. i can't do anything that i used to be able to do, i cant bend, lay sport, long walks, gardening, cant lay in a normal bed i have had to move slats from under my bed, doctors say that nothing has chaged in my bank its impossible, but its hard to think that 4 years ago i was fine, only changed 3 years ago.

I have an appointment with Mr. Evans in southampton genral 22nd july, i was just wondering whether anyone is experiencing or experienced anything similar?

Im getting very worried as im only 19.
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Old 6th May 2014, 11:52 PM
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Default Re: Cant Move - SURGERY 7 YEARS AGO

Hi Mollie,

Welcome to SSO

Can you describe in more detail how your back prevents you from moving? I assume that pain is your main problem - is that right? if you describe your pain we may be able to help more. It's good news that you're going to see Mr Evans as he'll be able to investigate things thoroughly.

Hang in there, we'll do our best to help

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 7th May 2014, 09:15 AM
mollieruby mollieruby is offline
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Default Re: Cant Move - SURGERY 7 YEARS AGO

I Get sharp Pains, as if someone in twisting a knife into me at the bottoms of my back,

My shoulder blades are real problem and all around the rods themselves, its just like I sit up and I just cant move, its not so much the pain, its the fact im 19 years old and im like a 70 year old, I have to be carried to bed, I cant walk up stairs, ive fell 15 times in the past year.

I Know lots of prople that had the same surgery and they can do nearly everything they want, where I cant do anything.
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Old 7th May 2014, 11:16 AM
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Default Re: Cant Move - SURGERY 7 YEARS AGO

How awful have you seen your GP recently? If you need to be carried to bed and can't walk then you really ought to be seen by a specialist much faster than July!! If things get really bad, please get yourself to A&E. No-one should put up with this level of pain and disability, and it sounds as though something is badly wrong.

In what ways is your movement limited - please could you describe this more for us? Are you having trouble moving your arms and legs? Obviously your spine is fused so you won't be able to bend, twist or otherwise move the fused vertebrae, but although you have a long fusion (according to your photo) this shouldn't limit you to the extent that you're experiencing.

Please don't despair

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 7th May 2014, 11:58 AM
mollieruby mollieruby is offline
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Unhappy Re: Cant Move - SURGERY 7 YEARS AGO

I see my GP quite regularly, they don't do nothing, they put my referral as urgent and I got july, not good enough but cant do much, doctors just give me painkillers that don't work, and sign me off sick but I cant sit round doing nothing all day.

I can bend, but if I bend sometimes I cant get back up, cant really twist very much, I can hardly walk, I cant sit up straight I have to slouch, and I cant walk upright, I have to slouch when I am walking.

I can always move my arms doesn't matter how much pain I'm in, my legs go stiff, but obviously every time I go to the doctors my back hasn't gone.

I have called ambulances out ot my house, all they do is give me gas and air make me go to the toilet, leave and it happens again. I Have been to A & E previously a couple of times and because its not an accident and not classed as an emergency they tell me to go to the doctors.. its just one vicious circle,

I just don't hear about anyone else that cant move for up to 4 days, I don't know how im gonna live with this if I don't get it sorted, they told me this would make my life better, but im starting to think its made it worse.
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Old 7th May 2014, 12:53 PM
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Default Re: Cant Move - SURGERY 7 YEARS AGO

It sounds horrendous you shouldn't be able to bend or twist most of your back - but you should have movement in your hips and in the 1-2 unfused vertebrae you have at the bottom of your fusion. Bending will be done from your hips, and twisting will be very limited. Is it pain that prevents you from getting up again once you have bent over, or can you physically not manage it?

"Having to slouch" doesn't sound good, especially when you are walking. This can sometimes indicate a problem with the way your spine is balanced post-op, and is something you must make sure Mr Evans knows about when you see him (NB it is definitely a Mr Evans you are seeing, not Mr Evan Davies?).

The reason the ambulance men make you go to the toilet is that inability to use the loo can be a sign of serious neurological problems which may indicate an emergency. It's a good sign that you can use the loo and that they leave you alone, really, even if it doesn't feel so at the time!

Were you given any physiotherapy post-op?

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #7  
Old 7th May 2014, 01:25 PM
mollieruby mollieruby is offline
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Default Re: Cant Move - SURGERY 7 YEARS AGO

I physically cant manage to get back up again,

I Will tell evan, if I see him if not its his understudy Katie I will be seeing. but I think I do need to see mr davies. This is unbearable.

And now I wasn't given any, but the pain is always there no matter what, it stays like normal pain I can deal with then it gets worse. The pain never goes.

xxx
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Old 7th May 2014, 08:04 PM
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Default Re: Cant Move - SURGERY 7 YEARS AGO

Hi Mollie,

I can't believe how useless your A&E department are if they won't help you when you're in so much pain and have such a high level of disability Have they X-rayed your spine to make sure everything looks intact? I think it might be worth phoning Mr Davies' secretary to see if you can hurry up the appointment, you can't carry on like this
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  #9  
Old 8th May 2014, 02:02 PM
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Default Re: Cant Move - SURGERY 7 YEARS AGO

Can you take someone with you who can tell them how bad it can be. Just in case you are having a good day.
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  #10  
Old 9th May 2014, 11:31 AM
mollieruby mollieruby is offline
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Default Re: Cant Move - SURGERY 7 YEARS AGO

My Fiance is coming with mew to hospital, hes the one I feel sorry for putting up with me like this, having to carry me to the toilet, to bed, to the front room even had to get me dressed somedays.

I have phoned the secretary and they said that's the soonest one they can give me and they cant promise ill see my consultant as I was off his book 2 years after surgery.
so im not sure whats going to happen but I cannot put up with this anymore
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  #11  
Old 9th May 2014, 12:13 PM
burdle burdle is offline
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Default Re: Cant Move - SURGERY 7 YEARS AGO

You should not have to.

Make sure you tell the person you do see everything and then ask him to make sure he discusses with your consultant.

Try not to leave without having clear instructions as to what is to happen next. If they order tests try to establish what the follow up will be and the follow up after that. If necessary get a direct contact so that you can get hold of someone after the appointment as well.

Make sure your partner knows to do this as well so that he can say things if you forget some of them which we often do when we are the patient.

Good luck
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  #12  
Old 10th May 2014, 07:00 PM
Teri2809 Teri2809 is offline
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Default Re: Cant Move - SURGERY 7 YEARS AGO

I hope it gets sorted soon for you. No one should have to live like that.
Good luck x
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