United Brachial Plexus Network

Hi All! My name is Tracey and I have a 5 year old daughter who was born with a brachial plexus injury involving her right arm. She has had OT, PT with e-stim, and range of motion since she was born. Has never had any surgeries and has had alot of recovery in her arm. She can use it to snap her coat (which is very hard to do and she turns her wrist around), but has learned to compensate ALOT for her arm injury. She has problems with external rotation, supenation, and extension. She has always had her arm bent at the elbow when she stands and runs etc. Took her to a Dr. and her xray is showing an under developed ball and socket in her shoulder. Try 34 in the good arm and 21 in the injured arm. Now we will have a MRI done and see what is going on. She has alot of "winging" due to using her whole shoulder blade instead of using her ball and socket to move it. Has anyone had this problem? The Dr. said this is very common for this kind of injury and this is the age that these things start to happen in these cases. Any information and feed back would help me at this point!! Thanks, Tracey

HI Tracey and welcome to the message board! We have a totally different situation with our daughter Maia who is 3 1/2 so I'm not in a position to offer you any advice. I just wanted to welcome you and hope that some people come forward with some info for you.

BTW - we have a section here for awareness - there may be some documents in there that may be helpful in some way...hope you can check it out:

ubpn.org/awareness

good luck and keep in touch,
francine

Hello, Tracey. Welcome to the board. While I'm glad that you were able to find such a supportive and informative place, I'm sorry that you had to come here. It sounds like the problems you are describing are common results of BPIs. If you haven't already, it is important to find a good BP specialist. We travel across the country to go to TCH (TX Children's Hospital), but there are other BP surgeons throughout the country. If you are comfortable posting where you're from, perhaps someone will have a suggestion for you. Also, you might want to contact a couple of BP Specialists before even getting the MRI done, b/c there are also different opinions about tests. I have read a paper by Dr. Peter Waters that he usually finds CT Scans to be more reliable than MRIs for children 5 y.o.+. Our daughter is only 2 1/2 y.o. so she has only had MRIs done (and intra-op EMGs). Perhaps Francine who just replied as well can tell you more about CT Scans as she recently had one done on her daughter (who is actually younger than 5). Our daughter also has shoulder problems and has problems with external rotation and supination. One dr. has recommended a surgery called the Capsulodesis and said that eventually Nicole might need a Derotational Osteotomy surgery as well if the Cap. doesn't achieve the desired results. Another dr suggested that we just go with the oste. so we are facing these difficult decisions too. BTW, if you have access to aqua therapy at a warm water therapy pool, I feel that has been instrumental to Nicole's ongoing progress (in addition to surgeries and other therapy and estim). Again, welcome, and best wishes to you and your family. -Tina

P.S. I was wondering what you meant by the #s 34 and 21 if you could explain please. Thanks. Also, what is your daughter's name?

Hi Tracey,
We just came back home from TCH and my daughter's third surgery. She is 18 months old now. She was born with no use of her arm. After the first two surgeries, she has slowly started to use it more and more. After the third surgery, one of the doctors told us the same thing. He said her ball and socket joint hadn't formed because of no use from her using her arm. He said that it is a pretty straight-forward procedure where they go around the shoulder blade and make an incision about 2-3". He said that they would just tighten up the muscles and that would help form the socket. I hope this information helps. Good luck

Your child's recovery sound similar to my Kaitlyn's- She is 21 months and can reach all the way up, touch the back of her back and behind her neck. She has quite a bit of supination but has scapula winging and her elbow is up at times. Her arm hangs down most of the time but she has a small degree of internal rotation. Recently we had an MRI at Dr. Nath's and Dr. Water's request. They were looking to see if her socket had formed. They are watching it but it looked good. Waters said she was in and tight. I would be happy to tell you more details if you'd like- They were orginally looking to see if she needed shoulder surgery. So far so good. The MRI may give you good news. I e-mailed Waters about if I should have doen a CT scan and he too said not until age 5. Good Luck in your search often if seems there are more questions than answers - keep looking!

my Jade had winging. she had the mod quad and she is not nearly as bad. she is 17 months so it didn't happen for long. look into chiro maybe????