First, it takes real strength to carry all of that for so many years — you deserve proper care and support, and it's never too late to explore your options.
On the question of leg braces (orthotics), age is not necessarily a barrier. Leg braces and orthotics can still be helpful for adults with SMA to support standing Show Full Answer
First, it takes real strength to carry all of that for so many years — you deserve proper care and support, and it's never too late to explore your options.
On the question of leg braces (orthotics), age is not necessarily a barrier. Leg braces and orthotics can still be helpful for adults with SMA to support standing, reduce falls, and improve stability. They won't straighten the legs structurally, but they can provide meaningful support. An orthotist or physiatrist familiar with SMA would be the right person to assess what's possible for you now. Regarding scoliosis surgery as an adult, it is more complex than in childhood, but it is not automatically ruled out. The key factors a surgical team would consider include:
- The severity of your spinal curvature
- Your current respiratory (breathing) health
- Your overall physical condition
Spinal fusion is the most common surgical approach for severe scoliosis in SMA. However, surgery does carry risks, and a thorough discussion with a specialist experienced in SMA is really important before making any decisions. The extreme fatigue and sleepiness you're describing is worth taking seriously. Severe scoliosis can compress the chest and make breathing harder, which can reduce oxygen levels and cause significant tiredness. This is a known complication of SMA combined with scoliosis, and it can worsen over time if left unaddressed.
Falling frequently is also a serious safety concern that needs urgent attention from your care team. The most important next step would be to see a specialist — ideally a neuromuscular disease clinic or a doctor experienced with SMA. They can assess your breathing, your spine, your mobility, and your fatigue all together.
A referral to both an orthopedic surgeon and a pulmonologist (lung specialist) familiar with SMA would give you the clearest picture of what help is available to you right now. You've waited long enough — you deserve answers and a proper plan.
May 4
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