Life in a Scoliosis Brace

So you just found out you need a brace. You are probably feeling a whole host of emotions that go along with this new chapter of your life and journey with scoliosis. Wearing a brace is very important. Your brace has a big job to do – it is trying to keep your scoliosis from getting worse and help you avoid surgery, which is sometimes the path if further progression (worsening) of your scoliosis takes place. Although you may feel overwhelmed right now, soon enough your brace will become part of your daily routine and you may not even think much of wearing it all. It’ll have become your new normal.

Even while living in your brace, you can still enjoy hanging out with friends, going to school, playing sports and being a normal kid or teen. Below, you will find some very helpful information to hopefully make your journey with bracing a little bit easier. Know that you are not alone in this journey! There are many other kids all over the world who wear braces too.

Talking to my friends about bracing

You may feel different from your friends and peers now that you have a brace. This is normal. Having scoliosis and needing a brace is a big change. It is really important to remember that wearing this brace is temporary and does not need to define who you are. The brace does not change your favorite things, your personality or what makes you special.

Talking to your friends about wearing a brace may be something you’re worried about, but most of the time good friends will not see you any differently. Just like braces on your teeth, crutches or a cast, a brace is a medical device helping to fix a health problem you have.

Start by sharing about your brace with your close friends. Maybe let them try it on and see it up close. Some kids find it fun to get a pack of vinyl stickers and decorate their brace with their friends.

If you are struggling to find a way to talk to them about it, ask a trusted adult like a parent, teacher or coach if they can help you share about your brace with your friends.

For younger kids, often an adult can help a child share about a brace with friends in a way that makes the brace seem very cool. Social acceptance among peers is very important to kids and helping them be accepted with their brace on will lead to better compliance.

Dealing with the emotions of bracing

It is challenging to deal with any medical condition, but being a teenager trying to adjust to the big change of wearing a brace can be extra hard. There are many emotions that go along with bracing and many of these are very normal. You may feel a range of emotions from anxious and worried to sad and angry. You may feel excited or happy to be trying a new treatment that can help your back – those are normal too! You may feel embarrassed to have to wear a brace – this is a common feeling that many teens have while they are wearing their brace. It is important to remember that your brace is there as a medical tool, just like someone who needs crutches, braces on their teeth or a monitor for diabetes. The most important thing to do with your feelings around bracing is make sure you are able to talk to someone about them. Find a trusted adult or friend and share how you feel. It can also be helpful to find a support group with other teens your age who are also wearing braces for scoliosis. Groups like Curvy Girls have networks of other kids and teens who are walking the path of scoliosis too. Sometimes just being able to spend time with others who are also dealing with scoliosis can make you feel a little better about your own scoliosis. If you are still really having a hard time, talk to your doctor or orthotist. They have a lot of resources to help make this journey as positive as possible. Always know that you aren’t alone and that this is a temporary part of your life.

Dealing with skin breakdown under brace

Some children and teens who wear braces end up with skin breakdown under parts of their brace that have pressure or rub a lot. This can be challenging since this skin breakdown can lead to pain, and if left unattended can lead to infection. It is important to attend to any skin breakdown as soon as it’s discovered to ensure there’s little-to-no interruption in bracing treatment.

If you notice that your child’s skin is breaking down, it is best to get in touch with the orthotist right away, so the brace can be adjusted. A properly fitting brace should not cause cuts or breakdown on your child’s skin.

One thing that can help prevent skin breakdown is a properly fitting undershirt. Ensure that your undershirt covers all the areas that the brace touches. Companies like Brace Buddies, Brace Yourself and KnitRite create shirts specifically designed to be worn with scoliosis braces.

Brace fashion tips

Wear shirts/dresses that have designs or ruffles to help hide the unevenness caused by your brace

Wear leggings instead of jeans so they discreetly stretch around the brace

Layer on top of the brace

Wear shirts that flare out at the bottom so it gives room for your brace to hide

In the cold weather jackets & sweatshirts are an excellent way to hide your brace

Traveling with a brace

Traveling is exciting. There are many tips to making it easier to travel while in a brace.

  • Bring along pillows for a road trip. You can use these pillows to help position your arms in the car and even put behind your back if that helps. Practice ahead of time to make sure that you find the most comfortable arrangement before getting in the car.
  • Take breaks to get out and stretch.
  • See if you can time your out of brace break time for the day during the car ride.
  • If you are flying, make sure TSA knows about your brace since the materials may set off their scanner.
  • If you are going on a short flight and want to put your brace in a luggage, many airlines let you check a bag for free if it has medical equipment in it.
  • Whether it’s a car or a plane, always make sure your seatbelt is fitting properly and on at all times.

Staying cool in the heat

Summertime brings a lot of fun under the sun but you may also notice that with your brace, you are feeling hotter than without it. It is important to not become overheated while you are wearing your brace.

Try these tips to stay cool while still enjoying the sun…

  • Wear a thin, tight fitting shirt under your brace and a loose airy shirt on top.
  • Try a cooling vest if you are still overheated.
  • Stay hydrated!
  • Ask your orthotist to put some additional air holes in your brace so it has more airflow underneath.
  • If you are out at the pool or by water, dip your feet in as it will help you stay cooler.
  • Bring along a portable fan!

Cadince’s Journey

My pediatrician had been watching my growth and the curvature in my back for the past few years. But, in the summer of 2018 I noticed I was starting to have some severe shoulder pain. In July it was confirmed that I had scoliosis. Aug 4th was my first visit to Shriners Hospital in St. Louis, MO. I was pretty devastated because I have been tumbling and cheering since I was three years old. My tumbling started to get harder and I was having a hard time with the pain. Then came the brace I had to wear. I made the decision to go ahead and start wearing one instead of waiting due to the pain. My goal was to wear it as much as possible. The quicker I get it and wear it, the faster I’ll get out of wearing it. Boy was I in for a rude awakening.

I wore the first brace for only six moths before having to get a new one. I thought that the first brace was bad enough, the second one was worse. The new one (The Boston Brace) was formed to my body, it was longer, hotter and way more uncomfortable! You could always see it under my clothes. In choir we had to sit on risers and people would stare at me because of how I had to sit and it was worse when I had to get up. It was like being a turtle on its back trying to get up. I fought with my parents to wear it every day. Because I wasn’t wearing it, my tumbling and jumps stopped progressing. I was tired all the time and couldn’t’ eat well since the curve was around my stomach area. I was overall pretty miserable!

After about the 50th time of being forced to wear my Boston Brace we discovered it was too small. So off to the 2.5-hour drive to the orthotics department we went. Eric, the guy who adjusted and fit my brace for me, made me a deal. If I would wear my brace like I was supposed to for three months he would recommend me for an experimental brace that would allow me to move. I was super excited about that offer and thought of not being so sweaty all the time and being able to move more. I’m always on the move being a competitive athlete!

The Green Sun Brace has been a game changer in my life! I wear the brace everyday and even sleep in it. It’s so much more comfortable than the Boston Brace. Since wearing the Green Sun Brace I’m getting better correction, I’m finally getting taller, I have an appetite, its less noticeable, I can get on and off the floor without looking like a turtle on its back and I went from only doing 2-3 back handsprings at a time to doing them all across the gym floor! I am now doing roundoff back-handspring back -tucks and working on layouts. My toe touches are the best they have ever been, and I made the top competitive cheer team at the gym I go to! All with no pain in my back or shoulder!!

Thank you, Green Sun, for letting me be a part of this research and my brace!

Brace-wear compliance & the importance

Compliance monitoring in bracing

Many parents and physicians have become interested in an improved ability to monitor a patient’s wear compliance (how long each day a brace is worn). A simple and user-friendly way to monitor brace wear in real-time is frequently desired by parents and patients. Currently, a clinician’s ability to monitor compliance is limited to word-of-mouth reporting by the wearer/their parent or the discretionary implementation of a temperature monitor such as an iButton or Orthotimer. Both of these types of compliance monitors are optional add-ons that add steps, time and complexity to an orthotist’s workflow and also do not offer real-time feedback. There is currently only one known option that features embedded sensor technology that communicates to a family-facing app (patient and parents), as well as to clinicians in real time – The Green Sun Medical Whisper Brace.

Bracing success calculator

This surgical risk calculator is based on scientific research published by Dr. Dolan and Dr. Weinstein, et. al. from the University of Iowa in 2019. You may recognize Dr. Weinstein’s name as he is a well known and respected figure in the world of scoliosis care and research and is a pediatric orthopedic surgeon specializing in spinal deformities and problems with the hip. The ground breaking BRAIST study which found bracing to be an effective treatment for scoliosis was also published by Dr. Weinstein and his group.

By looking at 115 patients with scoliosis who were untreated, a number of possible predictive factors were analyzed including the age of the patient, their gender, their curve type, their Cobb angle, and skeletal maturity. Ultimately, a mathematical model was developed that looked at skeletal maturity (via the Sander’s scale), Cobb angle, and the type of curve. Our calculator has been updated to include all curve types described by the scientific publication; simply selecting the matching curve type will adjust the calculation accordingly.

Just as the conclusions of the paper stated, we hope that this calculator for estimating the likelihood of surgery if a curve is left untreated will help you and others to make better, more informed treatment decisions. Now instead of merely wondering and hoping that a curve won’t get worse and require surgery, you can calculate the risk of a curve worsening using rigorous scientific data from real cases of untreated scoliosis.

References:

1.  Dolan, Lori A.; Weinstein, Stuart L.; Abel, Mark F.; Bosch, Patrick P.; Dobbs, Matthew B.; Farber, Tyler O. et al. (2019): Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST). Development and Validation of a Prognostic Model in Untreated Adolescent Idiopathic Scoliosis Using the Simplified Skeletal Maturity System. In Spine deformity 7 (6), 890-898.e4.

2.  Sanders, James O.; Khoury, Joseph G.; Kishan, Shyam; Browne, Richard H.; Mooney, James F.; Arnold, Kali D. et al. (2008): Predicting scoliosis progression from skeletal maturity. A simplified classification during adolescence. In The Journal of bone and joint surgery. American volume 90 (3), pp. 540–553

What to do if your child will not wear the brace

We get it. Bracing is sometimes hard. Between school, sports, friends and the normal stresses of daily life, sometimes sticking to a routine for wearing a brace is a challenge for kids and teens. Maybe you found out that they are hiding it in their locker during the day at school or you simply cannot get your child to wear their brace to bed. Scoliosis, like any medical problem, can be stressful and can have bumps in the road. There are ways to help your child get through this time period of bracing to help ensure they have the best chance at successfully halting their curve in its tracks.

  • Talk to your child to find out the reason why they will not wear their brace. Are they being bullied or made fun of? Is the brace pinching them when they sit or sleep? Is it too hot? Do their clothes not fit properly with it? Is it making it hard to get through the day? Finding out the reason for why your child will not wear their brace is the first step to finding a solution.
  • If they are having a hard time at school, make a meeting with the teachers/staff to discuss a new plan. Maybe changing in gym class is embarrassing and your child’s school could give them a study hall instead. If the brace is uncomfortable to sit in all day, maybe there is an adaption for that too.
  • Talk to your child’s orthotist. If the brace is uncomfortable, try talking to the orthotist to see if there are ways to make it more comfortable. Maybe extra air holes can be added to help your child stay cooler or maybe an area can be shaved down or pads added to increase comfort. You orthotist is the best way resource for ensuring the most comfortable bracing option for your child.
  • Talk to your child’s doctor. They may be able to recommend some additional suggestions for compliance with the brace. There are newer compliance monitors that can help set goals for wearing the brace enough each day to help motivate kids. They should have ideas on how to work around the trouble that you and your child are having with compliance.
  • Have your child connect with others who are braced for scoliosis. Sometimes, finding peers to talk to who are undergoing the same treatment can be very helpful. Your child may find tips and tricks from others who have scoliosis that you may not have thought of. It is also possible that seeing peers being compliant with their braces will encourage your child to do so too.

Mehta casting

Mehta casting is an excellent treatment option to help our littlest scoliosis warriors be able to have a chance at a straight spine. Out of all the babies who have scoliosis, the majority will need no treatment and self resolve. About 10% will develop something called Progressive Infantile Scoliosis which needs active treatment or their scoliosis will cause damage due to its severity.

Mehta casting is a treatment that allows for the use of plaster casts to be used to slowly let a child’s spine grow into a straighter position. These casts are applied under general anesthesia on a special table that allows your child’s doctor to derotate their spine and apply the cast to help their spine be in a straighter position.

Your child will have an X-ray while under anesthesia to make sure the cast is doing its job. When your little one wakes up, the cast will feel wet, warm and fit snugly. This is normal and will be like this while it dries over the following few days.

Most children adjust wonderfully to Mehta casting. They have their casts changed about every 6-8 weeks and the process often becomes easier and easier as the child gets used to it. Many families enjoy picking different colors for their child’s casts and even decorating them.

Casting should not limit your child from reaching normal developmental milestones. While certain activities need to be adjusted such as bath time, many others can be done normally and your little one can have lots of fun being a toddler.

A Parent’s Part

Tips for a child wearing a brace to school (info for 504 plans, etc.)

Going back to school with a new brace or after surgery can be exciting for some children and scary for others. The first way to plan for the first day is to talk with your child about how they feel about going back. They know the dynamics in school, so listen to what they feel they might need for the first few weeks back.

Contact the school and set a meeting to plan. Include the nurse and the teacher so that you can all brainstorm the best way to support your child. Some topics to discuss include:

  • Lightening the load of backpacks and books
  • Accommodations for sitting, moving around and more time in the hallway
  • Physical education excusing the child or adapting the class
  • A cushion for hard chairs
  • Shorter days and rest times
  • Adaptations for gym class and recess
  • Giving your child a separate place to change out of their brace for gym or sports.
  • Dealing with heat in a brace – sometimes schools will install an air conditioner in your child’s classroom(s).

Communicating with all the teachers and staff about your child’s needs is the best way to ensure a successful school year. Bringing information about scoliosis and the surgery can help adults understand what your child just went through. A 504 plan can help your child’s needs be specified in a clearly laid out place so everyone is on the same page to make sure your child is learning comfortably.

Adapting a brace for sports

Scoliosis does not need to stop you from doing the sports that you are passionate about. Talk to your doctor and orthotist about whether they think that you should remove your brace for sports or whether they think that you should keep the brace on.

Sometimes, your orthotist can even make adaptations to the brace to better fit your sport. For example, a swimmer who can’t have their brace off for an 8 hour swim meet may have plastic brackets added to their brace instead of metal so they do not rust when the brace gets a little wet from the pool deck.

Each individual’s scoliosis journey is unique so your care team will be able to best help you figure out exactly what you need to continue to stay on top of your game.