← Neuromuscular Scoliosis: A Guide for Families
There's no single right answer. The best choice depends on what matters most to your child and your family. This page lists the things to think about, then gives you a worksheet to weigh your reasons.
Things to think about
- It is important to think about your goals as a family. It's also important to think about your child's other medical problems and, if these are severe, whether your child has a reduced life expectancy
- The time in hospital, and the extra help your child needs at home after surgery, can take a heavy toll on families. Try to get a realistic sense of what this will mean for you and your family before deciding
- It can be hard to go ahead with surgery for a problem that isn't causing symptoms. But the reason for surgery is to prevent the problems that will come as the curve grows. Which treatment makes most sense may depend on how you feel about those problems
- Surgery may prevent the problems of a big curve, but it won't fix the underlying causes of the curve (the neuromuscular disease)
- There are many possible complications of surgery, and most can be treated successfully. Even when complications happen, 90 in 100 parents are satisfied with the results
Getting ready to choose
Answer yes or no:
- Do you and your child understand the options for treating neuromuscular scoliosis?
- Are you clear about which benefits and risks matter most to you?
- Do you have enough support and advice from others to make a choice?
- Are you sure about the best choice for your child and you?
What other questions or concerns do you have? Write them down and bring them to your visit.
Your decision worksheet
For each reason, score how important it is to you, from 1 (least important) to 5 (most important).
Reasons to choose surgery
- I want to prevent the problems caused by the curve getting bigger. 1 2 3 4 5
- I'd like to make daily care easier for me and my child. 1 2 3 4 5
- I want to improve my child's sitting balance. 1 2 3 4 5
- The risks are worth it if my child has a better quality of life after recovering from surgery. 1 2 3 4 5
- My other reason: 1 2 3 4 5
Reasons not to choose surgery
- I want to avoid the risks of surgery. 1 2 3 4 5
- My child's life expectancy is not very long. 1 2 3 4 5
- I'd rather wait and see if the curve gets bigger and causes problems. I understand surgery is more difficult for bigger curves, and the risk of complications is higher. 1 2 3 4 5
- My child's biggest problem is sitting, so I'd like to try modifying the wheelchair, understanding the curve may grow and cause other problems. 1 2 3 4 5
- My other reason: 1 2 3 4 5
If one list has the most 4s and 5s, that may be the best choice for your child and you. Either way, talk it through with us.
Questions to ask us
- How big is the curve and how fast is it growing?
- What will happen if we don't operate?
- Which operation do you recommend, and why?
- What are my child's own risks?
- How long will the hospital stay be?
- What help will we need at home?