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Old 16-10-2011, 10:54 AM
Hobbs Hobbs is offline
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Join Date: Nov 2010
Posts: 41
Default Marfans post scoli operation

Hi,
My 13yr old daughter had surgery mid this year She is now fused with rods from T4 to L4. Her scoliosis is due to the connective tissue disorder Marfans so I realise this makes it different from normal processes and outcomes of scoliosis.

In June 2010 when we noticed something was happening, her three curves measured upper thoracic 22 degrees, lower thoracic 33 degrees and lumbar was 45 degrees. In Feb 2011 (which is when we thought the surgery was to be done) her curves measured 33,75 and 60 degrees. 2nd of June was the last time before surgery that she had xrays that showed 46, 86 and 80 degrees. Surgery was done 2mths later and xrays taken days after surgery showed the curves now stand at 40,36 and 19 degrees. We have seen the spinal clinic twice since surgery but neither times have we had further xrays despite reporting her shoulders are now rolled forward and there is pain in the shoulders with a muscular lump on the top of her left shoulder. When do they normally take the next lot of xrays? I mentioned this before we left the hospital but was confused with the doctors lack of concern.
I understand that sometimes the upper curves will correct themselves over time after the surgery but as this area is fused and rodded, is this still a possibility in our situation? I also fear that the shaping of the rods did not take into account my daughters elongated Marfans spine length forcing her shoulders to round earlier than natural for her and perhaps this is why she now has rounded shoulders and her neck is pushed forwards. Is this a feasible conclusion? If so what can we do about it? I did ask the surgeon but he didnt give an explanation as to why its happening. Before surgery her pain was all mid and lower, now its all upper in the shoulders and between the shoulder blades. How much of this is normal? Although the surgery had improved the serious curves in the thoracic and lumbar areas so there is no regret there, the surgery had to happen, but it just feels like we have replaced one deformity with another and I am not sure what to do about it...
I dont want to find out years from now that its too late and there was something we could have done. Please help.