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Thread: My latest appt

  1. #1
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    Default My latest appt

    I went to see my surgeon yesterday and he was so happy and relieved when I told him that I feel better than I felt at my last visit and I'm doing a lot more. He jokingly wiped across his forehead and said phew thank goodness for that. He said he's so glad that I didn't have my hardware removed because he really didn't want to do it. He got his plastic spine model out and showed me why I'm so much better off. I told him I get low back pain and worry that my last disc is is wearing out so he showed how having a fused spine compared to haveing a curved one makes the risk of that disc wearing out less now than before. He just said to stay active and rest when my low back is hurting. He told me that without the surgery I would be having serious problems in about 10 years time.

    I'm disappointed that I didn't have an xray though-my last one was 18 months ago. I said I would like one but he said he didn't see any need for one so I have to trust that he knows best.

    He said to give them a call if there's any problems but I thought you had to go through your GP?
    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

  2. #2
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    Default Re: My latest appt

    Hi,

    So glad everything is going well! Hope everything keeps getting better.

    I'm trying to develope the courage for a follow up. I've no idea y I am so chicken.

    Ange

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    Default Re: My latest appt

    Hi Sarah,

    That is good news! I agree it's best not to have an x-ray unless there's a real need for one. It sounds like your consultant was great at explaining stuff, which is nice to see! It's good to have some perspective regarding lumbar pain - most of the population suffer from this at some point - and sadly if your spine is curved then the extra pressure on your discs will make you more susceptible to disc degeneration, so this is something we have to deal with whether we have surgery or not. Keeping your core strong can help protect your remaining lumbar discs, as you know.

    I'm so glad that you're doing a lot better now I'm unsure about follow-ups these days as I don't have them, but you shouldn't have a problem getting one organised if you need one.
    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.

  4. #4
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    Default Re: My latest appt

    Hi,

    That is good news - not least because it sounds like you are not in so much pain as before. keep an eye on things though

    I have always thought that about fused spines- that in theory (despite all the negative stuff) that the disks get a better deal. Nice to hear someone confirm it.

    I always find it irritating when consultants say that about contacting them if any problems - its as if they have no idea about the process and how to get back into it if you need to. Don't they know about the doctors formidable receptionists and then the GP access and then the referral (and the subsequent loss in the system, misinformation and general incompetence) that has to take place? Would that it were as simple as just dropping them a line.


    Hope you don't have to- take care.
    Burdle -

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    Default Re: My latest appt

    I'm very fortunate to have such a caring surgeon, he is a lovely genuine man who just wants to see somebody having a better quality of life after this surgery. I told him the screws don't impinge as much as they did and he explained about the scar tissue growing and that's probably why. I think they have their 'off' days like we all do and thankfully he was having a good one yesterday but I think I made his day when I said I had improved

    I've realised now that it would be a miracle to not be in pain with the amount of metal I have in my back so any pain I have now I've grown more accepting of it and tell myself that I am lucky that I have done as well as I have

    My daughter has a check up with him in Sept and I know if I have any worries I can talk to him at her appt.
    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

  6. #6
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    Default Re: My latest appt

    Oh this is great stuff to hear! As from what I've been keeping up with you is that you havent had the nicest of years this past year, so awesome stuff to hear it's all seemingly sorting out now and that more surgery wont be needed to help you out. But i agree with you on the hardware part of things, as i think i have a slight issue with one screw near my shoulder/ neck area, but its something to compensate with for having a straight spine. But I really do hope that it all continues to be like this for you, as you deserve it
    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

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    Default Re: My latest appt

    Bluestone,
    Very very exciting news for you! I hope things get better and better!
    Was great hearing that about your disc issues, as I will have up to L5 fused and have chosen to leave my L1S1 until I HAVE too. So happy your appointment went well!!! Take care!!
    Krier

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    Default Re: My latest appt

    Brilliant news Bluestone!! And Burdle's comment about how easy it is to get in touch with the surgeons tickled me Glad you are improving, and that he took the time to explain things to you - I find I am better when I understand something - probably cos it means one less thing to stress over
    I'm 44, I had a scoliosis: thoracic at 49 degrees, lumbar 47 with severe rib rotation. My surgery took place on 28th March 2014, I have 26 screws and 2 titanium rods.

  9. #9
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    Default Re: My latest appt

    Thank you for your lovely comments
    Its been a long journey to get the point of accepting that this pain isn't anything sinister. It really does make a difference having your surgeon say that its okay.

    I'm having a bad day today though but now I tell myself that's what it is-a bad day and it doesn't mean that something is wrong. I've walked the dog and have found that going for a walk really does help, its finding a balance of excercise and rest and I've found it. I know what makes me hurt more so I take my time, I've learnt that the key is to not rush things as this tenses my muscles up. Certain things such as lack of sleep, time of the month or stress does make my pain levels higher because I'm perceiving it differently.

    Oh well its only taken me 3 years and 8 months to get there
    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

  10. #10
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    Default Re: My latest appt

    That sounds like an excellent appointment Sarah, I'm so happy for you

    Regarding getting 'back in touch' if you have any problems, it tends to depend on whether he has actually discharged you from his care or not. If not, then it's a simple call to secretary for an appointment, but if you are now discharged then you will need to go back through your GP.
    Me, a Mod? Nah ... I'll always be a rocker

  11. #11
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    Default Re: My latest appt

    That's interesting, Gilly, but not my experience. maybe it's different if you have had surgery but if you haven't and you see a consultant and he says - come back if it doesn't improve or if you are worried - you have to go right back to the GP and get another referral.
    Burdle -

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    Default Re: My latest appt

    Quote Originally Posted by burdle View Post
    That's interesting, Gilly, but not my experience. maybe it's different if you have had surgery but if you haven't and you see a consultant and he says - come back if it doesn't improve or if you are worried - you have to go right back to the GP and get another referral.
    I called my surgeons secretary today and asked her whether I have to go through my GP and she said there is a 'window' of 6 months, meaning that if I have any problems within the next 6 months I can call his secretary for an appt. if 6 months pass with no problems then I have to go through my a GP which makes sense to me
    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

  13. #13
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    Default Re: My latest appt

    Quote Originally Posted by GillyG View Post
    That sounds like an excellent appointment Sarah, I'm so happy for you

    Regarding getting 'back in touch' if you have any problems, it tends to depend on whether he has actually discharged you from his care or not. If not, then it's a simple call to secretary for an appointment, but if you are now discharged then you will need to go back through your GP.
    Thank you Gilly
    He's a lovely man and when he shook my hand he put his other hand over mine and gave it a squeeze which I thought was lovely-it was his way of saying how pleased he is with me. Trouble is I feel like I'm tempting things to go bad again by saying things have settled
    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

  14. #14
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    Default Re: My latest appt

    Quote Originally Posted by burdle View Post
    That's interesting, Gilly, but not my experience. maybe it's different if you have had surgery but if you haven't and you see a consultant and he says - come back if it doesn't improve or if you are worried - you have to go right back to the GP and get another referral.
    Yes, I think that is the difference since we are kept under the surgeon's care for around 2-3 years and then usually discharged, at which point it's back to the GP for a referral - except I wasn't aware of the 6 month 'window', that is great news Sarah
    Me, a Mod? Nah ... I'll always be a rocker

  15. #15
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    Default Re: My latest appt

    I totally forgot about this window they give you after they discharge you, so i'll try and keep that in mind for the future. And thanks for the little info on how long people are normally under the care of someone, as i was wondering the other day how long it is.

    But it's all sounding great for you here's to a new life
    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

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