Article to read on Posterior Shoulder Instability

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445168/
This article leaves me with some questions about the certainty of only posterior dislocations for kiddo. It sounds so incredibly rare to have true posterior shoulder instability with dislocations (as opposed to sublux), but this is what we have been told she has all based off her first dislocation in the 4th grade, which was as a result of being kicked in the back shoulder at school as a child tried jumping over her. I am very curious to know if she has multi directional instability. I am going to read this more closely and do some research and ask the team.

Other questions this brings up:
1) How do we know that we have ruled out labral tear worsening or additional labral tears/lesions?

2) Does she have unidirectional, bidirectional, or multidirectional instability? And is it strictly posterior? I have definitely heard different doctors use the terms posterior and multidirectional, but I cannot find it written on any paperwork from any of her orthopedic doctors.

3) Have we ruled out bankart lesions?

4) Have we ruled out glenoid retroversion/rim erosion?

5) Have we ruled out reverse Hills-Sachs lesions?

6) Past MRI reports and doctor reports mentioned thickening of SGHL, but no explanation was given as to if that is important to this ongoing problem. Also, dyskinesis was mentioned in print, but no discussion from doctor as to relevance.

Each of these would need to be known in order to know how to proceed to fix the problem and I don't recall discussing any of these with the orthopedic surgeons with the only exception being that she was said to have a torn labrum that should heal on its own without surgery in 2013. No follow up from that Dr on that issue.

This article (Click here) has good definitions of the types of EDS and says the following regarding hypermobility and surgery:  "Shoulder instability in patients with EDS is common.25,29,45 Unlike patients with traumatic instability, patients with hyperlaxity and instability are more likely to experience recurrent subluxation than dislocation.29 The evaluation of shoulder instability has been well described.45 However, because shoulder symptoms in hypermobile patients are not always the result of instability, rotator cuff impingement and other conditions need to be considered.29Nonoperative treatment should be maximized before surgery is indicated.25 When surgery is required, open inferior capsular shift is the gold standard, but the results of arthroscopic procedures may now achieve similar results.29"

I will add articles here, as I find them. If you happen to be reading this, and you have an article to share, please add it in the comments. Thank you.

Bilateral Custom Support Vest has arrived - Ehlers Danlos Syndrome posterior shoulder

Well, it's finally here! After many weeks of waiting, back and fourth measuring, and more weeks of waiting...Hooray! We worked with the fantastic people at Scheck and Siress (Angela and Arnold) to come up with this hopeful solution for the ongoing bilateral posterior dislocations that occur multiple times each day. The vest was designed so that my daughter can put it on and snug it up herself with straps at front of each arm and on each side of rib cage as well as a zipper front. It was designed with as much breathability as possible, though it is still somewhat hot, heavy, and constrictive. It needs to be somewhat snug and firm to be supportive, so it's a good mix.  The bottom photo shows two inserts that sit inside the vest (you cannot see them from outside). They are a firm plastic that help sit right behind the scapula, in hopes to prevent some dislocations. These have been custom molded to fit her back, to make them as comfortable as possible.  They are removable, as well, and the velcro can be taken off and put on the front if they were to be placed on the back of the vest for comfort, for any reason.  Obviously, if we did that, they would not provide as much help, but it's good to have versatility.

We have been to many doctors and this is or current "last hope". No one has a better idea for her, so we can pray that this really helps. Day 1 didn't go great, but getting used to a new brace will always take time to adjust to. Our hope is that this will help her with ongoing good posture and proprioceptive (spelling?)  input to aid in her muscles holding those lose joints together. I hope and pray that this will allow her to do more. It's too soon to tell, however, so I will have to come back and update you in a few months. Please let me know if you have any questions. I know the people at Scheck and Siress said they have made similar devices for one shoulder, but this is the first bilateral that this team has made.  They seemed to have thought of everything and they really did a fantastic job.
As far as bulk, it is very streamline for a product like this, but it does look a little "football player" mode on a young teen. My daughter opted to just wear it over a cotton shirt without trying to hide it under sweaters, and more power to her. She's one brave young woman.

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.

Shoulder Taping with Leukotape - our experience

Almost every PT we have seen wants to try taping the shoulders. For many people with ehlers danlos syndrome, this is a daily help. For my daughter, it was not a successful option. There are two reasons this didn't work well for her:
1) She still dislocated as often with the tape as she did without. This could be an issue of needing to change the technique, or it could be that is lacked the level of stability she needed.
2) Taking the tape off caused dislocation of the shoulder, which increases the instability.
Because of that, we don't use this, but if you are interested, you can talk to your physical therapist and or med team about the options for your own needs. This type of tape is thicker and less flexible than a kinesio tape. It is meant to be used with a layer of the white roll underneath the tan tape, to protect the skin (so it is a two part taping). Again, I very strongly advise having your PT or professional team member help you with this and have them teach you how to use this support, if it is one that you would like to try. If you want to see the type of taping that was used for my daughter's posterior shoulder instability, Click here and scroll to page 6. This shows images as well as written description of the process our PT used.
Another interested power point on taping options with Kinesio tape can be found here. I am not familiar with these document creators, but I recognize some of the techniques as those that our medical team uses. In the second link, I found the thumb MCP stability method on page 48 to be interesting, though we have no experience with it, nor has our occupational therapist advised it. I am curious if others have been prescribed this approach, and if so, was it helpful?
As a follow up on our daughter's needs, the team opted to utilize immobilizers for an as need basis as well as a custom neoprene vest/wrap, which is being made at this time.

S3 Brace

Image picture from Alignmed site, here.
One of the surgeons we consulted with prescribed the S3 vest brace for scapula support by Alignmed. We ordered this in the smallest size at the time. It turned out to be too big to function properly for my kiddo, so we don't know if it would be of help or not. While the waist area fits fine, and height is probably right, her width is too narrow for the support to hit where she needs it.  We have it on standby for when she is older. In the meantime, we are looking at a customized option from a local prosthetic maker, and I will post more when we have it finalized.

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.