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Checking in again a year on

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  • Checking in again a year on

    So I kinda forgot about this place for over a year (oops, but life got real haha).

    Last time i checked in i was getting ready to have revision surgery on my rouge hooks in my neck.

    All went very well. My surgery got delayed by 4 days, which for the NHS is very good turn around. only downside was i wouldnt have my normal team due to being placed on a different ward. The surgery went very well, couldn't have asked for better. I got placed in a neck brace for 3 months (i didnt use it for this long as my neck strengthened up enough to not need it in my eyes which i know is naughty but i couldnt stand it any longer than i used it. I was only going to be in for a day or two, but due to my wound not healing up properly i ended up being in a week due to it nearly constantly bleeding.

    since then, life has been so much better. gone are the days i have excruciating neck pain due to spasming neck muscles etc. I can do sport without issue too now which is great. Only thing i havent tried since is running but that's hopefully going to happen very soon. I'm banned from full contact sports for life due to my neck being solidly fused now but i dont care about that. Hopefully, if everything keeps as it is, I'll get discharged in February (wooooo)

    The only reason that made me check in was im still getting lung issues and exercise induced athma type stuff. Should i bring this up with my GP next time im in? or should this go once i've got my fitness back..?
    Neuromuscular Kyposcoliosis, fused from C5-T12 for S-curved spine.
    Halo traction- 1 May 2014
    Surgery 08 May 2014
    Illiac strut graft around the T3-5 ish region because of sharpness of curve there. undertaken 5th June 2014
    Revision- neck hooks pulled off so got those taken out 3rd July 2017
    Underlying issues with Neurofibromatosis.

  • #2
    Jay,

    Good to hear from you! Glad to hear that the neck revision worked out well.

    Your the only person I know with a strut graft. This was a old procedure that was used to support a curve before any scoliosis hardware was invented. I don't know when strut grafts were first used, you might ask your surgeon. Its in the old orthopedic surgical books. That was quite a special fusion that was done on you! (Big smiles!)

    I would bring up the lung issues on the next visit as they are part of the package that we have to deal with.

    Do you keep in touch with any of the old Scoliosis Support members? I hope everyone is ok...

    Rod Stewart
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA 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

    Comment


    • #3
      Originally posted by titaniumed View Post
      Jay,

      Good to hear from you! Glad to hear that the neck revision worked out well.

      Your the only person I know with a strut graft. This was a old procedure that was used to support a curve before any scoliosis hardware was invented. I don't know when strut grafts were first used, you might ask your surgeon. Its in the old orthopedic surgical books. That was quite a special fusion that was done on you! (Big smiles!)

      I would bring up the lung issues on the next visit as they are part of the package that we have to deal with.

      Do you keep in touch with any of the old Scoliosis Support members? I hope everyone is ok...

      Rod Stewart
      Rod! It's good to check in again and see some of the old names.

      The neck revision has worked wonders. I'm so glad I had it done, it made this last year of university bearable (I graduate in november!)

      I've not heard of anyone else having it done either. I had a quick google search and the earliest journal i could find was published in 1994. But obviously it is proabably before then as the harrington stuff was around in the 80s right? It feels so weird to know that i have such an advanced spine. It's still brings up cool conversations with people.

      I'll definitely mention it next time I'm in. If they can't really do anything I'll bring it up when I next see someone on my team in February.

      I don't really, unfortunately I didn't get contacts of people before the site closed. I am part of a Facebook group that a lot of people are part of but i don't really see many posting on it.

      Hope you're doing well!

      Jay
      Neuromuscular Kyposcoliosis, fused from C5-T12 for S-curved spine.
      Halo traction- 1 May 2014
      Surgery 08 May 2014
      Illiac strut graft around the T3-5 ish region because of sharpness of curve there. undertaken 5th June 2014
      Revision- neck hooks pulled off so got those taken out 3rd July 2017
      Underlying issues with Neurofibromatosis.

      Comment


      • #4
        Jay, You know I picked Rod Stewart as a user name because someone had already picked Jose Cuervo.....It's important to have a good username, I think it helps with healing. (smiley face)

        Harrington rods came around 1960....and yes it is amazing to see what is possible when dealing with spinal deformity. Some of the rare cases like yours are cases of orthopedic ingenuity at its finest. Amazing pieces of art work of the spine, that are not to be forgotten....I would bet your surgeon is proud, what was his name again? You should post those side view x-rays of yours once again, its amazing I remember these things.

        And of course, before I forget, its nice to reflect on how truly lucky we are.....to have that second chance is a blessing as the pain of deformity can come in like a powerful storm. Kyphosis is a wicked sort of thing, here is a link with incredible progression rates, and also informative info on strut grafting. Do stay in touch!

        https://musculoskeletalkey.com/kyphosis/

        Ed
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA 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

        Comment


        • #5
          Originally posted by titaniumed View Post
          Jay, You know I picked Rod Stewart as a user name because someone had already picked Jose Cuervo.....It's important to have a good username, I think it helps with healing. (smiley face)

          Harrington rods came around 1960....and yes it is amazing to see what is possible when dealing with spinal deformity. Some of the rare cases like yours are cases of orthopedic ingenuity at its finest. Amazing pieces of art work of the spine, that are not to be forgotten....I would bet your surgeon is proud, what was his name again? You should post those side view x-rays of yours once again, its amazing I remember these things.

          And of course, before I forget, its nice to reflect on how truly lucky we are.....to have that second chance is a blessing as the pain of deformity can come in like a powerful storm. Kyphosis is a wicked sort of thing, here is a link with incredible progression rates, and also informative info on strut grafting. Do stay in touch!

          https://musculoskeletalkey.com/kyphosis/

          Ed
          I'd say what helped with healing the most was getting the all clear over things. It then helped me watch medical documentaries that showed the scoliosis surgery. something i wasnt able to do when i was still getting over surgery.

          For me an inspiration to get doing things is a 20 year old rock climber who has scoliosis and a fused spine. It makes me want to get rock climbing again after the mad rush to finish uni pulled me away from it all. My surgeons were Mark Bishop and Jason Bernard.

          I'll do my very best to stay in touch, life is super busy right now its hard to keep tabs on everything.

          Jay
          Neuromuscular Kyposcoliosis, fused from C5-T12 for S-curved spine.
          Halo traction- 1 May 2014
          Surgery 08 May 2014
          Illiac strut graft around the T3-5 ish region because of sharpness of curve there. undertaken 5th June 2014
          Revision- neck hooks pulled off so got those taken out 3rd July 2017
          Underlying issues with Neurofibromatosis.

          Comment

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