United Brachial Plexus Network, Inc.

2 years ago, my 13 yr old daughter started to complain about her shoulder being more sore. She'd had the mod-quad procedure done by Dr. Nath when she was 5. We saw good results from the surgery, but over the last two years there's been a significant reduction in her arm extension in all directions. A CAT scan done last year showed that her shoulder has become dislocated. Unfortunately the damage to the shoulder had already occurred in those first 5 years before the surgery was done.

My questions that I'm putting out: Has anyone experienced this situation where the shoulder pops out in their early teens? How common is it? Could the mod quad had any impact on having this happen? Has this happened to others who have not had the surgery?
Any suggestions on where to find this information?
And does anyone know what effective long-term corrections are available? We have looked into the Amanda Brace, but unfortunately she struggles with her weight and the PT doesn't think the muscle stim. would work.

Wow your daughter is a tough girl- as all our children are.

My daughter is also a patient of Dr. Nath. In my experience, whenever I have had a question, all I have to do is call. Dr Nath will get on the phone whenever possible and do his best to answer any questions. The number is 1-866-675-2200.

That's what I would do. Hope this helps.

Veronica, Mom of Olivia, 3 Bi-OBPI

Lots of things change as our kids go through growth spurts. This might be a good time to talk to a few of the bpi specialists. Go to the ubpn Medical Resource page and pick out a few. Most of them have email addresses, and those who don't are available by phone. I would talk to a few of them and explain your daughter's issues.

I know that for a long time we all just bop along...our kids play sports or dance and go to school and have friends. And that is what should happen. But growth spurts and puberty can be a monkey wrench in our plans.

good luck,
claudia

Brie's mom,
I would try e-stim on the muscles of Brie's upper arm and back to stimulate stabalization.
I had a PT tell me e-stim wouldnt work on me because I am bigger and that it would hurt too much. I had to fight for my e-stim unit but I did end up getting it and it has helped me so much!

Another thing you might consider is Kinesio tape. The tape can stim some muscles and inhibit others. For me it has taken my pain away about 99% of the time.

Or if your insurance will cover the Amanda brace go ahead and try it. It cant hurt and it might suprize the PT.

I hope Brie's pain goes away!
Hugs,
Amy 20 years old ROBPI from MN

So Amy - is your shoulder dislocated out of the socket? If so, how old were you when it happened? Did the muscle stim or brace help put the ball back into the socket if that were the case?

Thanks for your concern. Yes she is a toughie and as stubborn as it gets. I have faith that this will be an attribute when she's no longer a teenager . I have registered for a Clinic that Dr. Nath is doing in Seattle this summer. Hopefully we will get some direction then.

Unfortunately, eight years ago there wasn't a treatment which prevented or corrected malformation of the shoulder joint from occurring in BPI kids. It was once thought that tendon transfers (aka Mod Quad) would "fix" the shoulder. While they did have generally good results for improving function, recent studies have shown that progressive glenoid malformation is, at best, halted with tendon transfers, depending on how they are performed. In your daughter's case, that means she had five years of her shoulder developing wrong, and it could have continued down the wrong path even after her surgery. It's likely that the CAT scan also showed that her glenoid was "retroverted" (ie facing backwards) which usually is what allows the dislocation. Our kids are generally subluxed and retroverted to one degree or another, and this is usually progressive without intervention. With a deformed joint, as the child's arm gets longer and heavier, the likelihood of the subluxation becoming a completely unstable joint increases. Unfortunately, this sounds like what is happening with your daughter

Right now, there isn't a treatment for older kids that will correct the malformed shoulder joint and restore stability. Usually an osteotomy is recommended, which basically adjusts the arm to "accomodate" the new configuration of the joint. However, I don't know if anyone is saying that osteotomy can correct full dislocation and/or improve the stability of the joint.

In younger kids, the anterior capsule release has been shown the cause the joint to remodel into a more "normal" shape. The ACR is still pretty new (since 1999), so time will tell if the shoulder joint after that procedure will weather adolescence better, and remain stable. If the cause really is a glenoid that allows the ball of the humerus to "slip out the back" then a glenoid with more normal configuration should help. Unfortunately, it only works with kids that have plenty of growth left, as the joint normalizes by growing out into a more normal shape.

E-stim of the external rotators and scapula stabilizing muscles might be worth a try, especially since she is old enough to cooperate and understand.

Kate