United Brachial Plexus Network, Inc.

As many of you know, Mariella has been doing very well ever since her seconday surgery with Dr Waters just over one year ago. She has great external rotation, supination, great ROM, etc. The only problem that gets to me is her winging of her scapula. It is pretty bad in my opinion. Her shoulder and arm present themselves well and look almost normal. If I asked a stranger I am sure they would say nothing was wrong with her. BUT...That wing is what makes me feel sick and I don't know what to do for it anymore.
Can you tell me what worked for you? What currently works for you? What have you tried? What helped most? What didn't help?
I am open to ANY suggestions. Thank you for your help.
~Krista~

Could it possibly be that the winging scapula is the very reason your daughter has good results in her range? And on the flip side, if you try to fix this, will it decrease the great ranges that she's achieved?

Have you spoken to Dr. Waters about her winging? What does he think is causing it?

Guest

I am not sure, but it could be a possibility. She had great range ever since she had her cast removed and the winging hasn't been this bad. I did peak to Dr Waters about my concerns, but it was several months ago. He said with certain exercises (that I have been taught) and time, it should get better, slowly, but surely. I will talk to him about it again in May. I just think there has to be something to help with this, but I wouldnt want it to take her excellent ROM away. UGH!!
Thanks for you response.
~Krista~

the winging for us has been greatly helped (look at the pictures on the home page of tascnetwork of Richard's back if you question what I mean by greatly) by tes, bracing, stretching the tight traps and pecs, and exercises that actually help and not causemore damage. We were told as consolation that the winging was allowing him the ranges he had and that if it was fixed he may loose ranges. The exact opposite has been the case . As the shoulder got more stable and the winging fixed he gained strength and range dramatically.

How often did you do the TES? What kind of bracing did you use? I am going to look at the pics now. Thank you.
~Krista~

I just looked at the pictures and read up on the subject. Did you use the Amanda brace? It says that it should only be used once your therapist shows you how to use it, etc. Ella isn't even in formal therapy anymore. I am wondering if this is something she will benefit from and how I can figure that out. How often would she wear it? Any additional you have would be great. Ella is 3 years old.
~Krista~

It is important for you to understand that each brace has its purpose and the prescription for the brace should come from your bpi specialist (and not your therapist). Certain kids shouldn't have a hard scapular stabilizer compressing against their scapula and certain kids should. Your doctor needs to research the braces to find the right one for your daughter. One type of pressure might undo what your specialist has done surgically and another type of pressure might be the right kind. There are different reasons for winging.

Our therapist had her own ideas of what my daughter needed and her bpi specialist stopped us in our tracks and put us in a new direction with a different type of ARK brace.

The ARK braces require a great deal of parent commitment. You essentially create the brace every time you put it on. You have to be ready to take this on as well as your daughter must be ready to wear it daily.

If you get the right type of brace for your child, it will do the job very well.

BTW, it is NOT a summertime brace, it is very hot and has to be worn against the skin.

we used an ark brace custom designed - we needed double sided because of all the improper weight bearing we did with Richard when he was younger we caused an overstretch injury for both scaps so we needed to treat the winging on both sides as they both winged equally and severely as bad. The overstretched muscles become weak(too much wheelbarrow and the like) and so we had to hold them in a shortened position to allow them to shrink and tighten up again.. the brace has stiff plastic over the scapula and straps that pull them down and back into better alignment. then another set of straps to help stretch the opposing pecs and bring the fronts of the shoulders back into line. he wears this as many hours as he can as many days as he can - missing only for wash days - it takes a day to dry, and taking it off for PE and sports as it gets all sweated up and then he can't wear it. We had to address a poor sleep position as well that was overstretching the scap muscles. He Wears the TES virtually everynight at this point. we have been treating now for12 months- we were recomended the humeral osteotomy as well but with all the gains we have had I don't think we will need it anymore. His supination was less than heutral - now it is full, his external rotation actively was about 45 degrees less than straight out in front - he has gained now 45 degrees PAST straight out (gain of 90 degrees so far) only fortyfive more to go and he will have full- we are wearing a splint at night to move him through that external rotation range inch by inch - he can get hand to mouth with elbow down at side and can do forty complete arm raises - no compensation no winging - before he could only do one with lots of winging and having swing with momentum to get it up there. You could contatct tasc network and they could put you in touch with a therapist near you who is trained in Dr.Pape's protocols. WE see the therapist only to get splints and braces measured up and once every three or four months to see how we should step up the stretches/exercise/ or new electrode placements - they show me how , I video and then we do it all at home - saves time and money - if you have never heard dr.Pape's presentation it has alot of good info that has changed Richard's world.I beleive some of hte therapists at the Boston Children's Hospital have now trained with Pape - but don't quote me on that - check it out with tascnetwork to find someon for sure who is using these methods. I have no idea how easy this would be to do on a three year old as Richard is much older and able to cooperate very well and buy into his own recovery at this point. Any more questions I would be glad to respond on the boards or e-mail

Krista,
Natalie is 7 years old and is 4 weeks into her Tyler brace from ArkPCB. I believe our brace is similar to the one Richard's mom is talking about. Our situation is not as drastic as his was, but I believe we were well on our way to some serious damage. Her posture was really bad, everything was out of alignment and the uninjured side was starting to wing. Now we are doing TES every night as well as exercises and stretching daily. I've already seen great improvement in Natalie's posture and scapular positioning and am really excited about what's to come. Dr. Nath pointed us in the direction of both Dr. Pape with Tascnetwork and Ruth Cofre with ArkPCB. I was lucky enough to attend the BPI seminar in Chicago last month, have Natalie evaluated by Dr. Pape and get her brace from Ark. Our choice of PT/OT is extremely limited in our part of the country, but the PT we have has been great about learning all he can about our new approach to Natalie's therapy. It's so hot here (New Mexico desert) in the summer that we spend hours every day in the pool so Ruth Cofre of ArkPCB is even going to make a "swimmer's" version of Natalie's brace so that she will have the same support while being in the water!

Thank you for your responses.
Did insurance cover the braces? If not, how much do the run? Or are the different for everyone?
I am going to look on the site now to see if I can find a local therapist that is familiar with this. TY!~Krista~