A New Year, new specialists, and hope.

Nervous. New year, seeing a new shoulder specialist next week. Odds are he will order more tests, which are difficult for our daughter. Worried he will suggest to surgically fix her. Worried he will suggest there is still no fix. Kiddo expressed that last year was her favorite year because she had friends in school and it was fun. She says being at home for school makes her miss out on the interactions she enjoyed in her AP classes, with kindred spirits. Of course, she can't stay in school because her shoulders sublux and dislocate when she is there, but she wants to be there. And she wants to be able to go to high school next year. I have no control over any of it, and when the new year starts, and new specialists are on our immediate horizon, it gives me a panic and makes me feel tiny. So much hope goes into each of these appointments, and the track record is to leave with heartbreak and increased pain. Still, for now, we hope.

To research : Reconstruction in Chronic Shoulder instability

Open Reconstruction of the Anterior Glenohumeral Capsulolabral Structures with Tendon Allograft in Chronic Shoulder instability article link, here. Coming back to read this, per suggestion of another woman who found a measure of success with this process. There has to be hope! Please comment other experiences that you've had that have been helpful.

DonJoy Shoulder Cradle for night time

First, we laugh when we see this photo because it is not entirely a restful sleep when your arms stick straight up in the air.  That is a problem in and of itself, but the shoulders dislocating every day and night were a worse problem.  When the shoulder instability is at it's very worst, we add this Donjoy Shoulder Cradle to one arm at night time, and we use the Donjoy Ultra Sling (shown here) This combination has helped her out tremendously. We don't use the bolster underneath, and the other sling has straps going across the front, so it's all a bit ridiculous looking, but this combination helps her to stabilize long enough for that constant instability to tone up. It took weeks of doing this every night, and on very bad days, she will sometimes wear these during the day, but only for sitting. We find that this cradle doesn't suit her well for moving about (it does have velcro strap to help keep it on, but it's a bit heavy and adds to problems if she walks around with it. In addition to the immobilizers, when needed, we raised the head of the bed and used body pillows to create support where we can. This makes it very hard to toss and turn, which is a good thing. If you think these may be of help, talk to your medical team and see what they think. The Don Joy products have been our best brace/immobilizers to date.

Posterior Shoulder Immobilizer Donjoy Ultra Sling III

Pictured from the Donjoy website, here.


So, starting a few years ago, my kiddo began experiencing shoulder dislocation followed by shoulder instability. This was very scary for us in the beginning, and while we panic less as the years go by, we still struggle not to be enveloped by fear at times.

A product that has helped her, tremendously, during the most unstable time period is the Donjoy Ultra Sling III ER (we have an older model, but it looks the same). This helps her stay reduced long enough that she can get back to physical therapy and back to life. She had tried many slings and braces, but none worked at all until we put this on her.  Her dislocations are typically posterior (out the back) shoulder, and this sets her at the proper angle to keep it in.

Benefits:It's soft and adjustable, so it grows with her. It works great for posterior dislocations of the shoulder (better than anything else we have tried)
It can be worn to bed
Easy to pack and bring along (just in case)
All adjustable, so can even be switched to other arm if needed (though I still advise letting the professionals help you with that)

Disadvantage: It's confusing! you do need a professional to size this properly for you, then take a photo so you don't forget! If you have to readjust it, you will want to reference the photos.
You can't safely wear two at once while sleeping, due to straps (if bilateral support is needed)
Can pull on the shoulder, so wrapping with fabric or wearing a collared shirt can be helpful
Only came in adult sizes when we ordered, so not an option for smaller children
If bilateral shoulder instability is present, this can be too rough on the opposite supporting shoulder

3 years ago, just 4 weeks in this brace would have her stable and ready for physical therapy like a champ, but as she ages and her shoulders get worse, this isn't working as well as it used to. We are still using it at night during the ongoing daily instability, and around the clock during the worst of times, as advised by the medical team.