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Thread: A new beginning

  1. #1
    Join Date
    Apr 2013
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    Norway
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    54

    Default A new beginning

    Hello all,

    I've only just recently discovered this wonderful forum. What a great community you are!

    Thanks to the many people that stand up and share their stories here, I've finally found the courage to move forward with my own situation and share it with you. My hope is to ease the journey and perhaps give inspiration and courage to others in a similar position.

    I'm a Norwegian man in my mid-40's. I was diagnosed with Scheuermann in my early teens. From the conversation with the specialist, now some 30 years ago, a few words have been stuck in my memory: “90 degrees kyphosis and a significant scoliosis” ... “However we do not recommend surgery due to extreme risk of complications.” I wore a brace for some time, but it was so unfortable that I quickly stopped using it.

    Over the years I've coped fairly well with life. I've gotten through school and I've got an interesting job. Never had much success with romance, but I don't think it's fair to fully blame my back condition for this. A near total lack of self-esteem is probably the most important part here. I've never been able to respect my body. Nevertheless, the idea of surgery and the fear of severe complications was kept under lid. I wanted to be strong and “play with the cards that were given to me.”

    After I turned 35-36 the pain took a gradually bigger part in my life. From the rather mundane episodes a'la “alright, that was my lower back speaking” to the really dramatic “ohh my God, I've just got to get out of this chair - this pain is killing me!”

    It's scary to describe this next period. I can see how my pain and my appearance have shaped what I do, what I think I am, my relations with other people. During the past 4-5 years my back problems seem to “have gotten the better of me” and I'm becoming gradually more isolated and focused on the negative. I hate myself when that happens, as it is not who I really am. I'm generally a positive and optimistic fella.

    Now I've just turned 44 and the weight of it all is just too much. I've decided that I want to try to get surgery. Fully aware that surgeries rarely solves everything I'm hoping that it may give me more of my life back. Guess I've reached the point where I'm desperate to get a change. I've read the numerous and gripping stories here on SSO and despite all the perils, shores and challenges described they've all contributed to give me the courage to push for surgery.

    I've got an appointment with a GP the coming Thursday and I've made a list of the things I'd like to tell him. Hopefully I'll manage to convince him to refer me to a scoliosis/kyphosis specialist.

    Alright, that was the first step. I'm feeling a little better already.

  2. #2
    Join Date
    Aug 2012
    Location
    colorado
    Posts
    137

    Default Re: A new beginning

    Welcome to the site good luck with your journey I hope your appointment with the gp goes good.
    24,m fused oct 2nd 2012 t-2 through l-3.

  3. #3
    Join Date
    Jan 1970
    Location
    Sheffield, UK
    Posts
    16,238

    Default Re: A new beginning

    Hello there

    I'm so glad you've taken the step to join us, you are now amongst friends who understand exactly where you're coming from.

    Your story is eerily similar to my own, except that I just have scoliosis with an element of kyphosis (due to a lack of lordosis), but not the Scheuermann's kyphosis. I was 49 when I finally had surgery and, despite a few complications from one area which is having trouble fusing, I have found my life completely transformed and most definitely all for the better - virtually no pain and tons more self confidence

    Good luck getting a referral please let us know how you get on.
    Me, a Mod? Nah ... I'll always be a rocker

  4. #4
    Join Date
    Apr 2013
    Location
    Norway
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    54

    Default Re: A new beginning

    Thank you both!

    It really means a lot to me to have people like you around that face similar difficulties and that are so willing and resourceful in communicating and sharing experiences. I come from a modest-sized town and I can't remember having seen anyone else with my type of back. I've always felt weird and different. It's kind of cool to be amongst similars.

    I do believe that having experience from such traumatic conditions can make us even more appreciative of the good things that life has to offer. I'm very happy for you Gilly that your decision to undergo surgery has given you such a nice turn in life. It gives me stronger motivation too.

  5. #5
    Join Date
    Jul 2008
    Location
    west midlands
    Posts
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    Default Re: A new beginning

    Hi and

    I had surgery almost two and a half years ago and although I still have pain I don't regret a minute of it. I muddled through my twenties and thirties, working and bringing two children up and putting up with pain that would make me feel completely drained. My hump got bigger and i just wore baggy tops so nobody really knew. At that time I only saw Orthopedic surgeons and they just told me that surgery was too risky. As time went by i started to feel desperate, then I saw a scoliosis specialist who told me my 72 degree curve would continue to progress.

    My pain is most likely from my metalwork which can be removed if I want to take that gamble but I'm not so sure if its worth it. If I continue to have some pain I would still rather be straight and not have the worry of progression than be crooked and in pain.

    This is the place to be for lots of advice and support-I couldn't have got through my surgery without the support of many people here
    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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    Apr 2013
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    Norway
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    Default Re: A new beginning

    Thanks for sharing! It's truly impressive what we can get through when it comes to pain, but that's no reason for not trying to make it better. The pain you're experiencing now, is it also different in character compared to pre-op?

    What is your curvature now - roughly? I'm thinking that reducing my curvature down to low 40-ies would be perfect, but getting a back that allows me to sit and stand upright for a couple of hours at a time is top priority. I don't really understand how the surgeon decides on the final curvature, but I guess it depends on a lot of issues?

    Take care, Tor

  7. #7
    Join Date
    Jan 1970
    Location
    Sheffield, UK
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    16,238

    Default Re: A new beginning

    The aim in kyphosis surgery is different to scoliosis since the spine should have a certain amount of natural kyphosis, whereas there should be no sideways curvature (as in scoliosis) at all. I think they aim for around 40 degrees in kyphosis corrections, Mark is the best person to advise, I'm sure he'll be along soon
    Me, a Mod? Nah ... I'll always be a rocker

  8. #8
    Join Date
    Nov 2011
    Location
    Hertfordshire
    Posts
    6,049

    Default Re: A new beginning

    Hiya! Welcome and good luck!

    My story won't be hugely useful to you as I am 16 and had surgery 6 months ago at 15 however I can say modern surgery techniques are awesome

    I had no complications par a tad of nerve damage to the skin in my thigh which is slowly getting better and is almost completely okay now. I have also been left with a residual rib hump as I had a larger rib hump than most people with my curve size so I'm at physio but a costoplasty may be on the cards as I cannot commit to doing physio for life.

    I'm sure this surgery will give you a new lease of life, but be prepared as there is a lot of recovering to do
    I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).

  9. #9
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    west midlands
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    Default Re: A new beginning

    Quote Originally Posted by toref View Post
    Thanks for sharing! It's truly impressive what we can get through when it comes to pain, but that's no reason for not trying to make it better. The pain you're experiencing now, is it also different in character compared to pre-op?

    What is your curvature now - roughly? I'm thinking that reducing my curvature down to low 40-ies would be perfect, but getting a back that allows me to sit and stand upright for a couple of hours at a time is top priority. I don't really understand how the surgeon decides on the final curvature, but I guess it depends on a lot of issues?

    Take care, Tor
    My pain is different to pre op, I have some protruding screws that are causing pressure in my back and if I overdo things I just get all over back ache but my back is stronger. I can sit for longer too because I no longer have an uncomfortable hump.

    When I ask my surgeon what degree my spine is now he just says straight-too straight to measure and he's right-it is amazing considering my spine was apparently very stiff and hard work

    Gilly is right though, for you Mark is the best person to talk to in relation to kyphosis.
    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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    Apr 2013
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    Norway
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    Default Re: A new beginning

    Very happy for you Tiff! I hope modern surgery practice has spread to Norway too, but I guess the British level is top.

    I'm very aware of the no-easy-recovery part too. But I think it's much easier to motivate oneself for this when you know that the kyphosis/scoliosis won't progress any more and that the fundamental strength of your back has improved. At the moment I do a fair amount of physical excerises, but I'm always worried that i'm putting too much strain on my back and that I'm making matters worse.

  11. #11
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    Norway
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    Default Re: A new beginning

    Quote Originally Posted by bluestone View Post
    My pain is different to pre op, I have some protruding screws that are causing pressure in my back and if I overdo things I just get all over back ache but my back is stronger. I can sit for longer too because I no longer have an uncomfortable hump.

    When I ask my surgeon what degree my spine is now he just says straight-too straight to measure and he's right-it is amazing considering my spine was apparently very stiff and hard work

    Gilly is right though, for you Mark is the best person to talk to in relation to kyphosis.
    Sorry to hear that these screws are causing problems bluestone! As long as they are not "loose" or causing infections then I guess it's a matter of the body getting used to a new object? Hope you receive good information from your surgeon?

    It's really amazing that we have such flexibility in the spine to allow for such corrections though! If I lie down on my back on the floor, it hurts like h..l and there's absolutely no way I can straighten it out myself.

  12. #12
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    Norway
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    Default Re: A new beginning

    I know it's really too early to raise expectations, but the meeting with my GP today went really well. I feel much relieved! He was very understanding and wanted to know both about the pain issues as well as my quality of life.

    It felt like I was bombarding him with information - although he was typing fast on the PC, he could barely keep up.

    At the end of the consultation he told me that he had made up his mind quite early on, after his 2-3 min inspection of my back, but that he wanted to capture as much of the other aspects of my situation as possible. He made a referral to orthopedic department at St Olav, the regional hospital here in Trondheim.

    He asked me very specifically about my pain situation: "On a scale from 1 to 10, how much pain do you have in the mornings, during the day and in the evenings?" I hope I wasn't doing a big mistake when I said that most days the pain peaked between 4-6. Its rather difficult to rate pain, in particular in a situation where the pain is rather distant. (I was totally at ease in the consultation room.) However, I made a note that the pain was so strong that I could not concentrate on other things and that it made me depressed.

    When I mentioned that I really wanted to be examined by experts on scoliosis/kyphosis surgery he said that this approach would be most effective: "Many surgeons may simply ignore referrals from me as a GP, but they will not do that with referrals from the orthopedic department at St Olav. In fact, based on a thorough examination, the specialists at the orthopedic department at St Olav may refer you directly to surgery at another hospital with the most appropriate expertise." I was much more at ease.

    He then said that I should expect a letter from St Olav with 2-3 weeks with a confirmation of receiving the referral from the GP. How fast/slow the process will move after that he could not comment.

    So, that was another step on the road to a new beginning.

  13. #13
    Join Date
    Jan 1970
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    Default Re: A new beginning

    This sounds like a fantastic start, I like your GP already
    Me, a Mod? Nah ... I'll always be a rocker

  14. #14
    Join Date
    Apr 2013
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    Norway
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    Default Re: A new beginning

    I think it couldn't be much better. In fact, I have great sympathy for GPs in general. It must be quite hard to be interested and attentive to the great number of people with different problems, day after day. But this guy certainly seemed both constructive and enthusiastic.

    If you should ever be in need of a GP in Trondheim I'll be happy to share contact info.

  15. #15
    Join Date
    Jul 2009
    Location
    Upstate New York
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    180

    Thumbs up Re: A new beginning

    Hi. I had surgery two years ago at age 23. My curve went from 78 to 38. I have no complications at all. Had chronic pain before surgery. Now i have no pain. Hope the appointment goes well.. Message me if you have any questions
    "Success is not final, failure is not fatal: it is the courage to continue that counts."
    -Sir Winston Churchill
    http://www.youtube.com/watch?v=7qMo_8uk7vw

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