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Thread: Newbie wondering about scoliosis revision surgery

  1. #1
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    Default Newbie wondering about scoliosis revision surgery

    Hi everyone, I'm just new here, and was just wondering if anyone has had full revision of their old Harrington rod fusion surgery? I had my original surgery for my 75 degree double structural curves (T3-L4) in 1985 when I was 20, in the Freeman hospital in Newcastle, and although I was still left with an S-shaped spine, it was solid, and I had 20 good years before it all started to deteriorate. I had my Harrington rod removed in 2008, and am going into the RVI on 24th September for a revision of the whole spine, removing wedges of lumbar vertebrae to improve the flatback and break the old fusions to try to straighten me up a bit, as both curves have increased, I've developed a pseudoarthrosis at L2, and I'm now leaning to one side. My surgeon will extend the fusion down as I have a compressed nerve root at L5-S1, and bolt it all to my pelvis. Considering this is the third surgery I'll have had, I feel terrified about it and have started waking up at night with a real panicky feeling about it all. I've only found a couple of ladies who've had the full revision done and would love to know if there are more success stories out there!

    Jan

  2. #2
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    Default Re: Newbie wondering about scoliosis revision surgery

    Hi Jan

    Wow, that sounds like some revision they have planned for you! I had some problems with pseudarthrosis at L3 and suffered broken rods (3 times!) and had to have them replaced and an osteotomy done twice. I found recovery each time much quicker and easier than for the initial surgery, but it sounds as though you have to have the whole surgery one again from scratch However, you should still find a huge difference compared with your surgery in 1985. The instrumentation and techniques have come on in leaps and bounds over the years and they tend to have you up and walking around within a few days! Good luck and please keep in touch
    Me, a Mod? Nah ... I'll always be a rocker

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    Smile Re: New member wondering about scoliosis revision surgery

    Thanks Gilly, things do seem to have changed quite a bit over the last 30 years and I'm pleased there's no lengthy bed rest this time. It does sound as though he'll be addressing the whole spine and the varied problems that have developed, but I do feel I'm in very good hands - which I think is very important!

  4. #4
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    Smile Re: Newbie wondering about scoliosis revision surgery

    I sent you a message but dont know if you received it as dont often use this site. Anyway I will try this method. I have a double curve with a rod and last surgery was over 20 years ago. I have been going to Stanmore to see if they would do revision surgery for a number of problems I now have numbness and pins and needles in my thighs and alot of pain around my shoulder and neck. However I have seen a number of junior doctors there who keep telling me that nothing can be done as my spine has been fused. Therefore I would like to know which hospital you are under and which conultant as what they are proposing is very radical and I assume it isnt Stanmore.

  5. #5
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    Default Re: Newbie wondering about scoliosis revision surgery

    Quote Originally Posted by popsicle View Post
    I sent you a message but dont know if you received it as dont often use this site. Anyway I will try this method. I have a double curve with a rod and last surgery was over 20 years ago. I have been going to Stanmore to see if they would do revision surgery for a number of problems I now have numbness and pins and needles in my thighs and alot of pain around my shoulder and neck. However I have seen a number of junior doctors there who keep telling me that nothing can be done as my spine has been fused. Therefore I would like to know which hospital you are under and which conultant as what they are proposing is very radical and I assume it isnt Stanmore.
    You need to try and get a specialist, as they are the only ones who can say yes or no to if you can have something done, so try and get someone there who is to see you, as thats what revision is for, those who have fused but things havent gone too well so need the revision, and being at Stanmore you are in some of the best hands in the country

    hope this helps
    Jay
    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

  6. #6
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    Default Re: Newbie wondering about scoliosis revision surgery

    I have been under Mr Tucker for several years but he does not want to know despite correspondence he is hardly ever in clinic and I was seeing a good registrar but he has just left Stanmore. I saw the new guy on Friday who wasn't very informed. . Had better advice when I used to see Mr Molloy. I think most of Mr Tuckers work is now at private hospitals. So I am not impressed with Stanmore despite being there on and off for 25 years. I am now considering a referral to Southampton hospital unless I can find a better place hence my questions to the sender of this thread

  7. #7
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    Default Re: Newbie wondering about scoliosis revision surgery

    Hi popsicle, sorry I've just logged back on and seen your your message but I don't seem to be able to open it! My surgeon is Mr Gibson at the RVI in Newcastle. I have been seeing him for six years now, I was referred to him after the neurosurgeon I was referred to removed my Harrington rod, and I continued to have pain. I remember at that first appointment, Mr Gibson talked me through the flatback revision surgery and seemed to be trying his best to discourage me from having it. He said it was a hugely invasive surgery, with numerous risks and a lengthy recovery period. I sat there shaking my head making a mental note that I would never agree to that surgery. He said that although my spine was completely flattened by the T3-L4 Harrington rod (now removed), my fusions were all solid, and that I'd be taking a big risk having them all broken in order to try to realign my spine - I may never get such strong fusions again. Because I have a double curve and the Harrington rod correction wasn't that great, I'm fused in an S shape too, which added to the complexity of revising the whole lot.

    Over the last couple of years though things have deteriorated a lot. I developed very painful foraminal stenosis at L5-S1 and last year he said I needed a decompression and fusion at that level. They discovered I also have a pseudoarthrosis at L2 which needs fixing, and my thoracic curve has increased so much I now lean over to the left - where previously my thoracic and lumbar curves have always been equal. He said the surgery will hopefully bring my head back over my pelvis in both the sagittal and coronal planes, but will involve osteotomies and undoing all that was done 30 years ago. I am absolutely terrified about this surgery, but know I don't really have a choice. I can't stand for more than a minute or two and I'm having to use a wheelchair if I go out for more than half an hour as walking is so painful. I know it must be bad if I've agreed to something I felt SO strongly about not having six years ago! I know Mr Gibson is close to retiring, but there are revision surgeons out there and it's certainly worth tracking them down to get an expert opinion from them. Good luck x

  8. #8
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    Default Re: Newbie wondering about scoliosis revision surgery

    Hi Icejan, Popsicle, I had revision spine surgery in 2010, I had a decompression, osteotomy and new rods put in. I had Harrington rod surgery prior to that, had a rod in, rod replaced and rod removed within six months in the 80's. It takes approx. 2 years to fully recover from the revision surgery. I was originally fused from T10 to L4/L5. I am now fused from T3 to Pelvis. I am doing really well now. I am based in Ireland.
    Muriel

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    Default Re: Newbie wondering about scoliosis revision surgery

    Thank you Muriel, it's hearing success stories like yours that's keeping my rising panic in check! It sounds like my surgeon is planning something quite similar to yours. Did your original fusion/instrumentation in the 80's get a good correction, or was this addressed in your revision surgery? My correction was quite poor - the Harrington rod more held my curves where they were than straightened them out. When they've been fused in that 'S' shape, and the lumbar spine completely flattened by the Harrington rod - for 30 years, I don't know how easily they will move and be straightened and corrected?

    Jan

  10. #10
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    Default Re: Newbie wondering about scoliosis revision surgery

    Hi Jan, Yes I did get a good correction in the 80's but the bits below the fusion started to deteriorate almost immediately after , before the revision surgery I was falling forward and also starting to go backwards too. One of my hips used to stick out a bit, since the revision my hips are more even. I don't need to wear baggy close anymore.
    Muriel

  11. #11
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    Default Re: Newbie wondering about scoliosis revision surgery

    Hi

    I'm also at the RVI in Newcastle (live in east boldon) I had Mr Gibson initially but he past me over to Mr Fender. Had initial surgery 2009 now needing some kind of revision surgery (just waiting for a date)

    Both surgeons are nice blokes

    Welcome to the site, I hope you get all the help and support you need

    take care

    Mark
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

  12. #12
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    Default Re: Newbie wondering about scoliosis revision surgery

    Hi Mark and thanks for the welcome, it's always nice finding someone with the same surgeon/hospital . Did they give you any idea of how long you would wait for your revision surgery? The waiting is definitely the worst thing, and although I know they seem to be under enormous pressure, I'm not that impressed with the communication! I've spent the last 13 months being told so many different things by so many different people and been given so many different time scales, that I don't know what to believe. I've been cancelled four times now - my last date was yesterday - but have been assured I'm their top priority and they're trying to find an extra theatre day. Hope Mr Fender's list isn't as chaotic as Mr Gibson's seems to be.

    Jan

  13. #13
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    Default Re: Newbie wondering about scoliosis revision surgery

    Hi Jan

    I have been waiting since June, I was going to give them a ring at the end of the month, I remember when I had the first surgery I had to wait an absolute age and your right about communications, I don't think its the surgeon or his secretary its the waiting list people

    Sorry to read that you have had your op cancelled so many times, that would frustrate the hell out of me, you get yourself so psyched up and then get let down at the last minute, its unfair and it mucks about with peoples lives

    I hope you get a date soon

    take care

    Mark
    Latitude: 54 57' 34" N Longitude: 1 25' 16" W


    Mark's a groovin an a movin

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