United Brachial Plexus Network, Inc.

My daughter also has a left Brachial Plexus injury from birth and her left shoulder is now the problem too. She is only 4 but I am noticing it more and more as she gets older. It was not something alot of Dr's here seemed to know alot about so apart from a little bit of PT in the first 2 years we were not referred for furthur investigation because after 3 months she was starting to move her arm again. The problem though was that although we followed the advice of the PT her bones were growing incorrectly due to not having full extent of movement throughout the whole arm and shoulder. She was gradually moving it more but was still limited in some things. We eventually decided ourselves to find an orthopaedic surgeon whom was referred to us by a friend and after an MRI was performed on our child we discovered that her shoulder joint was infact injured as a result of the BPI. The bones had grown incorrectly and were over worn so that the ball in her shoulder was in fact flat on one side which is why she had limited movement. He was actually surprised she was moving it as well as she does and it is just sittng in place and could get worse, might not but could. So there is nothing we can do now but when she is a little older bone surgery may, and he stresses may, be an option.
Have you had an MRI and furthur investigation done since birth on your daughter's shoulder/arm? If not, it would be worth looking into. Go by instinct and if you think something is wrong dont rest until you are satisfied with the answers given to you.
I regret that I did not have my child looked at sooner by a specialist instead of just trusting what I was told by local Dr's and PT's but I had never heard of this before. Just because her nerves were on the mend and allowing her movement it was assumed everything else would fall into place from there. Not so. Maybe in adults but not in a child who is growing every day.
I hope everything will be fine for your daughter. I am not meaning to scare you as everyone is different I just suggest having it checked out if you feel something is not right. Best wishes.

Often the droop in the shoulder is due to the shoulder being subluxated in the joint. This happens because the muscles that normaly hold the joint in place are not strong enough (or not working at all) and so slowly over the years the shoulder subluxates. This happens in people who have strokes, but for them it can be very painful as it happens, but in BPI as it is a slower process as the child grows and the limb gets heavier it is not painful, though we can feel pain from other things.
Once it's subluxated there's not much that can be done to change it, though keeping the muscles that are working as strong as possible is good and can help.

I have this problem and my shoulder joint is smaller and malformed too due to the muscles around it not working enough/at all.

Get a good PT/OT who can give your child good exercises/fun things to do. Get an x-ray to see what the bones look like, for me this wasn't done until I was 14 yrs old b/c when i was born (nearly 32 yrs ago) there really wasn't much they did for BPI, especially as mine was only discovered when I was 3-4 months old due to many other health issues (I was born breach, 3 months early, not breathing, bad jaundice... spnet 3 months in teh NICU).

Good luck,
Marieke (31, LOBPI)

Ozmum,

There is a surgery being done in the United States called the anterior capsule release. It addresses the joint malformation you mention. My son also had a flattened humeral head on one side, and one year after this surgery it was normalizing into a nice round ball again. Your daughter's glenoid is probably also malformed, which can also be corrected with this surgery. I'm not sure who, if anyone, in Australia is doing it.

janalee,

The sloping, nonexistent shoulder can be the result of an abduction contracture, where the supraspinatus and/or middle deltoid is tight or contracted which causes the scapula to rotate so it "hikes up" into the neck area and causes the shoulder to sort of "disappear". So far, the only surgery which appears to address this at all is the Triangle Tilt, but the mechanism for what exactly it does to address the contracture is unclear.

Kate

Thanks Kate for the advice. We are seeing our Orthopaedic specialist again in a couple of weeks and I will mention this to him for sure to see what he says. The only thing he told us last time was that she may be a candidate for bone shaving type of surgery ( I dont know if that is the same as the anterior capsule release you mentioned ?) but not until she is about 8 years old and to just come see him each year as a check up on things. Concerns me it will worsen by then and the reason this topic caught my eye was that her shoulder droops slightly too now. Her elbow is also tightening up now and she holds her arm out from her body consistently and people have commented on how it looks like it is getting worse. I will definitely look into what you said about the anterior capsule release, anything to help her. Its hard worrying that it might just keep showing signs of becoming worse. I am hoping this visit will bring more enlightenment. Thanks again.

My child also has been showing signs of a drooping shoulder. We did a CAT scan and it showed a slightly flattened glenoid and a mildly subluxating humeral head.My doc as well as therapist have asked us to start strengthening the abductors, the extensors and extenal rotators of the shoulder on priority. Seems to be helping-the way she holds her shoulder seems a little better now.

Hi! My daughter is going to be 11 in August and is sporty too. Her right shoulder droops also. She had one year of pt/ot after birth and nothing else until just last November 2005 when she had tendon lengthening surgery in Cincinnati. When she was involved in her recovery pt I noticed the shoulder looked a lot better. She doesn't do her exercises like she should, and I've noticed a droop again. We're really going to have to sit on her and make her do them. It's hard when she's an active girl to make her do more! I added you as a friend on your myspace!

Take care and best of luck with your slugger!
Keri

Hi I just found this board. My daughter is 11 months old and she was born w/ bpp. She does not have an extreme case, but she did have ot her first 4 months. She was released by the therapist and neuro. We have been noticing her shoulder blade protruding? I dont know if that is the word, but it doesnt look like the right one. My husband wants to take her back to the therapist. Could the bones not be growing correctly? She does move her arm and shoulder, but there is something to this. I think

Welcome to the forums. I think this may be what they are talking about when they refer to "winging scapula". You may find more info on that by plugging it into the search. Although my son doesn't have that I get the impression it is caused by using other areas to compensate for movements. I could be way off base but this is what I have gathered from others that have discussed this. Some choose not to treat it as some have lost other functions by changing this. Others have opted for surgical correction. May be that your therapy could change it.
Sue

The winging is also due to the muscles that *should* be keeping the shoulder blade down are not strong enough to do so. Not always anything you can do about it though, no matter how much therapy...
Marieke (31, LOBPI)

Richard's drooping shoulder improved quite a bit as we strengthened the muscles with TES- this gave him the boost he needed beyond our regular exercises and stretches we were doing. We also did some splinting and bracing to help things along. His shoulder is much healthier now and looks better although it is not perfect.