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Thread: The all official 'Good luck JayMoe' thread!

  1. #31
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    Default Re: The all official 'Good luck JayMoe' thread!

    So they tightened me up last night and so that'll be the last time I need to be. Pain was minimal so I turned down my midnight tramadol. And saying that they changed my meds to tramadol cosine paracetamol ibubrofin and something for mu stomock lining. Was sick again but that is due to taking pain meds on an empty stomoch
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  2. #32
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    Default Re: The all official 'Good luck JayMoe' thread!

    I'm glad you won't need tightening anymore Jay! They used to tighten my halo daily and I came to fear it even though it wasn't painful - it was because they used an actual spanner rather than a torque wrench and the doctor had to put one hand on my face to steady himself. URGH. The sensation of having bolts tightened wasn't pleasant!

    Hope you are less sick by now, and that you aren't too bored and can get in a comfy position to read or watch the TV
    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.

  3. #33
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    Default Re: The all official 'Good luck JayMoe' thread!

    I really hope you are feeling more comfortable now Jay - hang in there, it will all be worth it in the end!
    Me, a Mod? Nah ... I'll always be a rocker

  4. #34
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    Default Re: The all official 'Good luck JayMoe' thread!

    Yeah, I'm pleased as well as I was really dreading it, only because I was in so much pain the previous night. Hated it being tighted as it was immence pain but the LA after sorted it all out in minutes And also as you said it doesn't feel nice feeling! all sickness is gone now, comfort is better now as as I have said the drugs work so I hardly feel it all now. By yeah I will Literally hang in here
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  5. #35
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    Default Re: The all official 'Good luck JayMoe' thread!

    So glad you're feeling better now Jay I hope the rest of your recovery is gentle

  6. #36
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    Default Re: The all official 'Good luck JayMoe' thread!

    Jay

    its good to see you hanging in there posting and documenting!

    Have they shot x-rays recently to see how much you have pulled up?

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

  7. #37
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    Default Re: The all official 'Good luck JayMoe' thread!

    Yeah, have just got some WiFi at the hospital so I'll be able to carry on, as in early ran out of internet on my phone,

    They haven't yet,but they have said they want to do them about Tuesday and then they will decide if it's enough or if I need more.
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  8. #38
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    Default Re: The all official 'Good luck JayMoe' thread!

    Pleased to hear your in good spirits Jay, keep up the good work
    Thoracic 72 degrees, lumber 30 degrees-fused aged 44, T2-L4, posterior fusion with costoplasty (8 ribs were chopped) on 3/11/10 under the care of Mr Ahmed at North Staffs Hospital. Now nice and straight

  9. #39
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    Default Re: The all official 'Good luck JayMoe' thread!

    Quote Originally Posted by bluestone View Post
    Pleased to hear your in good spirits Jay, keep up the good work
    So I have just found out that my major pain in the evening is due to not taking enough meds, as I just saw the Dr and he checked my drugs chart and saw I was having 3 doses not 4 as I should of Ben having! So he's now changes it so that I'm not getting in so much pain. Tonight I had to take 'the when needed' drugs as I was so desperate for somerelief. Going to see about having an anti nausea injection tomorrow morning so I don't bring my meds up that I take.
    Was pretty ill again this morning from eating before my meds but didn't take them till late as I wasn't well enough and Was really weak and so my body kind of shut down because of it and wasn't aware of anything for an hour or so. But am fully better now

    Hopefully I manage to find out what is causing all my sickness soon as its making me very weak after being so now.

    I hope I'm not scaring people with this all. As I'm sure I'm a unique case and its not normally this bad.
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  10. #40
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    Default Re: The all official 'Good luck JayMoe' thread!

    Poor Jay strong painkillers can make you feel very sick, so it's not surprising - just most people here won't have these painkillers and the associated sickness until *after* they've had surgery! The anti-sickness drugs are very effective and hopefully you will feel a lot better once they have kicked in
    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.

  11. #41
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    Default Re: The all official 'Good luck JayMoe' thread!

    I can sympathise Jay, I was recently prescribes Tramadol for pnuemonia-related chest pain and it made me very nauseous I ended up feeling so ill that I couldn't take any pain relief so I had to give up on them in the end Hope you are feeling better now.
    Me, a Mod? Nah ... I'll always be a rocker

  12. #42
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    Default Re: The all official 'Good luck JayMoe' thread!

    Well today was a very good day as I had some nausea in the morning but had the injection in time so that I wasn't sick pain is very well managed today as I'm not as bad as I was this time last night. All my neuros are good as they check them everyday which you would expect as they are 'playing around' with the spine. Traction is going well,can feels complete difference in my back, as the muscles are soft for the first time in about 3 years AND I can see a visible difference in my ribs which is a great sign I think to show that it is working and also I can feel it sometimes in my back and ribs so I how that this is the only week that I will be on it.

    Will be asking my surgeon tomorrow if I can get a chair with a traction unit on it so that I can go out and get some air and sun for a bit, as it's getting boring being inside 24/7

    The tramdol generally don't make me sick as during the day I'm fine, its just the morning I feel ill.

    But all in all its been a good day and I'm going for a xray to see how much correction I have got from it so will let you know how it goes
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  13. #43
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    Default Re: The all official 'Good luck JayMoe' thread!

    Next surgery seems like a go tomorrow!!
    Diagnosed at 14 in '08 with Neuromuscular Kyposcoliosis (due to my Neurofibromatosis Type 1) in the Thoraco-lumber region (T-65* L60*).
    Halo traction for a week then I had surgery 08/05/14, fused C5-T12 correcting curves by about half! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14

  14. #44
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    tonibunny is offline T Sr: Admin, Big Sister and Da Police!
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    Default Re: The all official 'Good luck JayMoe' thread!

    Great news Jay! Do you know if the halo has given you some good correction? Will you have to wear it for a while following your surgery? (I did).
    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.

  15. #45
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    Default Re: The all official 'Good luck JayMoe' thread!

    Glad to hear your hanging in there, sounds like the halo is having some effect already, best of luck for you for tomorrow hope all goes well and you get a great correction. Wishing you a straight forward recovery, look forward to hearing your update when your up to it.

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