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Old 16-10-2011, 10:54 AM
Hobbs Hobbs is offline
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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.
  #2  
Old 17-10-2011, 05:32 PM
Dr Scoliosis Dr Scoliosis is offline
 
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Default Re: Marfans post scoli operation

Thank you for your enquiry and I wish it were possible to give you precise answers to the questions you have posed.

First, from the information you have provided your daughter's curve behaved very aggressively with major progression in the course of one year. Scoliosis in Marfan syndrome is far less predictable than it is with idiopathic curvature. Further, it is also well recognized that back pain is often a feature in patients with Marfan syndrome who are developing curves.

From the figures that you have provided, a good correction has been obtained.

According to what was carried out at surgery, at least with idiopathic curvatures, there is no set routine of post-operative x-rays. The Dr Scoliosis on duty used to see patients in clinical follow-up at six weeks and again at six months post-surgery when x-rays were taken. Standing x-rays were also taken before the patient left hospital. This must have occurred in your daughter since you have quoted the post-operative measurements.

All scoliosis units have their individual routines. Many clinics have pre-operative photographs made and you should enquire whether these were done as this will give you a more valid basis for comparison with the present status and your concerns that your daughter's posture has changed adversely.

It would be perfectly reasonable for you to write to your surgeon detailing your concerns and request an early appointment for clarification. If you are having difficulty in obtaining the information you seek, your family doctor could write on your behalf.

Of course, the management of spinal deformity in Marfan syndrome may be affected by other manifestations of the underlying problem.

I trust this information is helpful.

Dr Scoliosis
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Old 17-10-2011, 10:48 PM
Hobbs Hobbs is offline
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Default Re: Marfans post scoli operation

Thank you for your quick reply.
Could you please advise me whether or not a fused part of the upper thoracic spine has the possibility to improve? As I understand it, surgeons often leave the upper curve untouched as it is often a compensating curve which will often correct itself. With this logic in mind, surely the upper curve now fused and rodded and corrected by 6 degrees, does not have a chance to improve? Is this correct?
  #4  
Old 21-10-2011, 07:39 PM
Dr Scoliosis Dr Scoliosis is offline
 
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Default Re: Marfans post scoli operation

Thank you for your further query.

In the circumstances which you describe where the upper thoracic spine curvature was fused there will be no spontaneous correction in the remaining degree of curvature.

By way of explanation, it is true that if there is a single primary curvature, usually in the thoracic spine, and compensatory curves above and below that, the latter may spontaneously correct if the primary curve is straightened out by the operative procedure. In most situations of this type the compensatory curves are quite mobile and can be shown to correct well on erect side-bending x-rays taken before the operative procedure. This may influence the planning of surgery.

I reiterate that scoliosis in Marfan syndrome is very different to adolescent idiopathic scoliosis and curves in this syndrome do not behave nearly as predictably as they do in adolescent idiopathic scoliosis.

Dr Scoliosis
 

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