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Thread: Advice needed for a newbie considering her first surgery!

  1. #1
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    Red face Advice needed for a newbie considering her first surgery!

    Hi everyone,

    I'm new here! This is my first post! So to introduce myself quickly- I've just turned 21 and I'm about to graduate Uni over here in England. I was diagnosed with scoliosis aged 15 and its always been a little curve (about 15*) but my kyphosis wasn't a worry until I had a growth spurt between about 16-19 years old. My kyphosis is now at 65 -70 I think.
    Basically I've been told to consider surgery as I have a lot of pain (although I would recommend memory mattress toppers to EVERYONE they're amazing!) so I am thinking about that. I do pilates and have physio to help with the pain but my physio has been stopped because of our national health service budget cuts.

    Anyway...long build up! I went back to my consultant this year because I noticed that my rib cage on my left side had moved forward so much that my underwear and tops fit funny. The hump is on my breastbone level where the gap in your ribs meet (i don't know what thats called sorry!!) I've also noticed a real change in the heights of my shoulders and hips. The appearance of my rib cage is one of the factors that makes me want surgery, all pain aside, but my surgeon said that the hump wouldnt move back.

    I'm still holding out hope that it will, has anyone had kyphosis correction that had protruding ribs/breastbone that were also corrected as a result of surgery.

    Thanks for reading!

    Kate

  2. #2
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    Kate

    It would seem that there would be some (hump) improvement with surgery. Some surgeons don’t want their patients to expect too much.... My surgeon had no guarantees and I was told that I could be fused “as is”. After I was done, it was a big “positive” surprise for me. I had no kyphosis or lordosis issues. The main goals are stopping the curves, and coming out pain free.

    Please remember that older patients are harder to correct. At your age, you have the advantage of your youth going for you.

    If you feel your shoulders and ribs are moving at a fast pace, and have not seen your surgeon in a year, it might not be a bad idea to go and shoot more x-rays to see what’s going on with things.

    There are a few kypho’s here...maybe a few will chime in.

    Welcome to the forum
    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
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    Hi Kate...

    The rib asymmetry would be from your scoliosis as opposed to your kyphosis.

    Hopefully, Toni will comment on this thread, because I don't know if U.K. surgeons are using the same sort of de-rotation techniques that are used here in the U.S.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
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  4. #4
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    Smile

    Hi all,

    Thank you very much for your replies. I saw my surgeon in January '11 and March '11, which is when we discussed surgery. My initial surgeon always seemed very positive about surgery but my last consultation was to try and make a decision and my parents came with me. My usual surgeon was there (Dr James Wilson-Macdonald) but another surgeon too, who seemed to want to discourage surgery, which I can understand but he only looked at my xrays and not my notes (as they were lost...long story!).
    I also found out that the chance of complications is a lot higher than I had originally thought. This has left me a bit confused and my parents now have a really negative attitude towards the surgery, which is bad because they would be caring for me if I had it.

    Thanks for clearing up that rib hump would be from scoli not kypho! Would really appreciate any input from fellow kyphos!

    Kate

  5. #5
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    Oh forgot to add that they've left me to make the decision, and from when or if I say 'lets do it' there will be a 6 month wait (as it's the NHS). I have an appointment for more xrays in a years time but I think that I would push for xrays sooner because things to seem to be progressing quite fast and I know my last progressions happened after I stopped growing- which can't be good.

    I was told that the more my curve increases, the greater the risk of the surgery. Sorry for waffling on, I'm just so happy to find people that will know what I'm feeling!

    Kate

  6. #6
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    At some point, one of these surgeons should be telling you what the progression rate is for the scoliosis and the kyphosis. It sounds like you have radiographs over time so they can do this.

    I don't see how you can decide without those pieces of information although the pain may make the decision for you.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Smile

    Hi there,

    I think I need to make a list of the things I need to know that keep popping into my head. Today I've arranged to see another specialist in Bristol, it never hurts to get a second opinion, and luckily we are entitled to 2 on the NHS.

    Thanks for your suggestion

    Kate

  8. #8
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    Quote Originally Posted by KateUK View Post
    Hi there,

    I think I need to make a list of the things I need to know that keep popping into my head. Today I've arranged to see another specialist in Bristol, it never hurts to get a second opinion, and luckily we are entitled to 2 on the NHS.

    Thanks for your suggestion

    Kate
    Smashing! :-)

    Make sure you bring all the radiographs so they can evaluate the changes over time.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    Hi Sharon,

    I think our consultants just keep copies on the computer because of the NHS system. I actually have only had one set of xrays for my spine, I was told when I was 16 that it wouldn't progress as I had stopped growing. Sadly that was not the case. My last xrays were in december I think so if I have them next month at least I'll have some idea.

    Thanks again for your reply.

    Kate

  10. #10
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    Well, you will at least have two points, 5 years apart. Better than a sharp stick in the eye. :-)
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #11
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    Hi Sharon, sorry I don't think I made it very clear what I was going on about! At 16 I was considered low risk and was sent away without xrays. I raised concerns this december just gone and had my first set for my spine. So I have only one copy! Hope that makes sense! I wish I had some from 5 years ago, it would make my decision a lot easier as I would have definitive proof that my curve has increased!

    Thanks,

    Kate

  12. #12
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    Bollocks! Sorry I misunderstood.

    Well I guess you can't know how fast you are progressing. You might want to ask specifically if the surgery is likely to get rid of the pain.

    Per Linda's comment, I am not sure they will de-rotate you but I can tell you it is very possible in some cases... one of my kids was very rotated and the surgeon was able to remove most of it. The "miracle" of pedicle screws.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #13
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    Hiya! Sorry, I've only just seen this thread :-)

    I'm in the UK too Kate. Our surgeons now routinely use the same pedicle screw systems that are used in the US, so I would expect that surgery would derotate your spine quite significantly; most people having surgery are very very pleased with the cosmetic results that they get.

    Occasionally patients in the UK are offered a costoplasty (rib-hump correction surgery) as well, which can be done at the same time as the spinal fusion or at any point later on, if it is thought to be necessary to achieve a good amount of correction. This surgery has become quite uncommon though as the pedicle screws do such a good job on their own.

    I know James Wilson-MacDonald, he's very well-respected. Who will you be seeing in Bristol? Ian Harding is very good. If you want to seek another opinion I would recommend seeing one of the consultants at the Royal National Orthopaedic in Stanmore if you can too, but I doubt a third opinion would be needed.

    Good luck! :-)
    Toni xx

  14. #14
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    Hi Sharon and Toni,

    Thanks again for replying, I can't tell you how nice it is to have people to discuss this with! I'm currently up a bit too late with a numb leg! It's nights like this when I think wouldn't it be nice not to worry about this!

    I really like Dr Mcdonald, and it's Ian I'll be seeing in Bristol, as you said. It's quite difficult to get appointments at the Nuffield Orthopedic as you may know and my last appointment was pushed back a month when I felt ready to make a decision.

    I really hope I can achieve a cosmetic result as well as being relatively pain free, although I only think about the way it makes me look occasionally, but when I do it's a bit discouraging, I suppose because of my age and the pressure of being around peers.

    Where are you in the UK, out of interest?

    Thanks,

    Kate

  15. #15
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    Hi Toni,

    Can't reply to your PM it says your inbox is full!


    Kate

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