Viewing 6 posts - 1 through 6 (of 6 total)
  • #183503
    Scapulothoracic Fusion

    Hi there my name is Julie, I’m a 33yr old mother of a wonderful healthy 4year old boy. I have an undiagnosed extremely rare muscular dystrophy ( so I’m told) I have been told my only option for my scapula winging is a scapulothoracic fusion, has anyone with dystrophy or know anyone with dystrophy that has had this operation carried out? And the outcome of it? From what I’ve read online the success rates aren’t that good which is leaving me wondering whether I should have this done or not.

    Julie86
    Participant
    Posts: 0
    Joined: 21/11/2018
    #183515
    Reply To: Scapulothoracic Fusion

    Hello and welcome Julie. Have you yet been able to get a proper diagnosis? AS for the scapula winging, both my son and I have it from FHSD, but as it is not interfering with daily life we have left any corrective surgery. I thin though that illustrates an important question you need to ask yourself. What will the operation improve, or give you over what you have now? What difficulties are you facing because you have this winging, is the improvement that is promised going to be worth the risk? Not because the op is risky per se, that is something your surgeon will discuss with you, but every anaesthetic, every operation carries a risk no matter how small the procedure, and those risks are often heightened by having MD.
    I am sure someone will pop up soon to give their experiences of this op.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #183517
    Reply To: Scapulothoracic Fusion

    Hi I opted not to have scapula correction as it could limit my movement. Although I had spinal fusion which was vital I am glad I didnt get the scapula fused as for the majority of my life passive stretching and normal activity has maintained the strength. My surgeon felt that it had little gain. it wouldn’t give me strength but could decrease range i had.

    Are you in pain?

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #183527
    Reply To: Scapulothoracic Fusion

    Hi mike no unfortunately still no diagnosis. They thought it was FSHD to begin with but now they are saying they have no idea what kind of MD it is as they have never seen a case like mine before. I did get a muscle biopsy done a year ago in my left arm which showed limb girdle MD but still head scratching for the rest of me. I have severe scapula winging in both sides and I am in constant pain, I have very limited strength in both arms and can barely lift anything, can’t raise my arms above my head, struggle to empty my bin. I struggle with daily living to be honest and the extreme tiredness is also difficult but also having a healthy 4year old really takes its toll. My only option for my scapul winging is the scapulothoracic fusion so I’m told but I just wasn’t sure if anyone had been through or going through similar things as to the outcome and whether or not it’s worth going through with it as it’s a crazy recovery period aswell.

    Julie86
    Participant
    Posts: 0
    Joined: 21/11/2018
    #183528
    Reply To: Scapulothoracic Fusion

    Hi Cat, yes I am in constant pain all the time. I have severe winging at both sides and this is my only option they said. I have very little strength in my arms and really struggle to lift anything if I’m honest, I can’t get my arms above my head either. Do you have winging too? Were you given both options for yourself? Would you say your operation has made a significant difference?

    Julie86
    Participant
    Posts: 0
    Joined: 21/11/2018
    #183644
    Reply To: Scapulothoracic Fusion

    HI Julie

    Yes I have right sided winging and also cant lift arms above head at all now. as a child I could only raise one hand in school above head height if holding elbow with the other. I didnt have any Winging of scapula till late teens so the raising arms to reach up or do hair was put down to muscles.

    My spinal fusion part was most successful. I do regret at times that they couldn’t continue the operation and fix ribs at front but due to my breathing they had to stop after back was completed as it took 3 hours longer in operation than planned.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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