Question: Bracing vs. surgery

[MamaBear]

Please forgive me if I sound completely clueless. My daughter recently got her Boston Brace. She had a huge jump in curve in a short time (went from 15/18 to 28/36 in one year). Our doctor did not say anything about surgery possibly being in the future. I've been trying to read everything I can and I think I am just confusing myself. This site has been great, I have a list of questions for her next appointment. I am just hoping for some insight on something I read that has me anxious. Someone said that the brace is a "temporary fix"......what does this mean? If it works and helps to straighten her spine, it won't stay that way? Then what? My daughter may have to go through 3 years of wearing this brace that she hates and then may still need surgery? What would be the point then? She is terrified of needing another surgery. She has already had two for Chiari and Syrinx and they were pretty awful experiences. What are the odds of needing surgery? Is there a certain cut off point regarding the degree of curve? Any insight would be so appreciated!

[Pooka1]

(snip)
I am just hoping for some insight on something I read that has me anxious. Someone said that the brace is a "temporary fix"......what does this mean?

My first comment is that the type of scoliosis your daughter has is different from AIS, connective tissue disorder scoliosis. etc. The best comments will come from the mothers of other kids with Chiari/syrinx.

Not sure I recall someone calling bracing a "temporary fix." The hope of bracing is to prevent a curve from getting worse.

If it works and helps to straighten her spine, it won't stay that way?

Not necessarily. I think most curves continue to progress through life though smaller ones at a lower rate. There are a few folks here who have documented evidence their curve didn't progress for years but I think those are the exceptions to the rule.

Then what? My daughter may have to go through 3 years of wearing this brace that she hates and then may still need surgery? What would be the point then? She is terrified of needing another surgery. She has already had two for Chiari and Syrinx and they were pretty awful experiences.

If you read the testimonials in the adult section, there are any number of people who wore their brace, some faithfully, who nevertheless needed fusion at some point. Wearing a brace is no guarantee to avoid fusion.

If a child is too young for fusion, you have to try something to prevent the curve from getting too large. Bracing and non-fusion surgery (titanium ribs, growth rods, VBS, etc.) are two approaches.

What are the odds of needing surgery? Is there a certain cut off point regarding the degree of curve? Any insight would be so appreciated!

Only a surgeon experienced with chiari/syrinx cases can even begin to guess at the odds of needing surgery.

In re cutoff, surgery is considered for thoracic curves greater than 50*.

Good luck.

[laurieg6]

My son has congenital scoliosis. He did wear a brace for 3 1/2 years and was then told he needed surgery. But his curves were, all along, much bigger than your daughter's are so he was at a much higher risk of needing the surgery (which he did get at age 12).

With your daughter's curves where they are right now she will not need the surgery. Hopefully the brace can hold her curves in place during her adolescent growth spurt, if she hasn't yet had a major one. I was told that growth is "the enemy" for scoliosis patients because during growth spurts are when the curves tend to increase the most.

No one can predict the future but, like Sharon (Pooka) said, surgeons today don't recommend surgery until at least one of the curves is at least 50 degrees. So try not to worry as much as possible and just focus on keeping your daughter as strong and healthy as possible. One problematic issue with brace wearing can be a weakened torso (because the brace is used to hold up the child's body and the muscles can lose some of their tone.) You might encourage her to do as much physical activity as is possible for her, especially sports that she's allowed to be out of the brace for, such as swimming (which is also great for the torso).

If the brace is horribly uncomfortable, it might need to be adjusted better for her. Maybe it needs to be shortened a bit or otherwise cut off in various places where it might be rubbing the wrong way?

I wish you all the best!