United Brachial Plexus Network, Inc.

Hello!
I was wondering if anyone has any info about the connection between torticollis and brachial plexus? My daughter is 18 months now and was diagnosed with torticollis at 3 months but I was only told she had a bpi right arm and a "winged scapula" 3 months ago. This was discovered in physcial therapy when the therapist noticed her winging scapula. I am very confused and angry. Her injury is not that severe as she moves almost like any other toddler but has trouble lifting her right arm to reach up and her shoulder droops forward. I am scared ! She was only 5 pounds when she was born (1 month premature) and no one said that there was any complications! I am unable to share my story as the site keeps saying that it is down. Just wondering if anyone out there had torticollis too? I have been to see a Neurologist and had the EMG and botox injections done on her.She is in physical therapy twice a month. I just don't see an improvement....

Hello so sorry for all you are going through. It's tough trying to get a straight answer. I know Thomas also had torticollis and olbpi. He has also had issues with low tone in his back and legs which they say is not brachial plexus relatied so. Who knows! I know Thomas has had a hard time. HE is 14 months still not walking just has started sitting and he goes to PT and OT every week. So I wish you the best I still don't have answers for Thomas low tone Stroke, lack of oxygen, or part of brachial plexus. Well I will be thinking of you. Carron E-mail me if you like..

Michele,
From what I understand when the brachial plexus nerves are damaged weaknesses in other areas occur. Both of my kids had torticollis with their injuries. Matthews resolved then became more pronounced after primary surgery then we started him with a chiropractor and haven't had any problems since. For Matthew's winged scapula we used kinesio tape for a while and it has seemed to have gotten a lot better. We have chosen an aggressive therapy schedule for Matthew, he has pt twice a week, ot once a week, chiropractic/reiki/massage once a week, and acupuncture once a week. If you're not happy with your Neurologist possibly there is a bpi clinic in your area or one you can send a tape to. Good luck.
Cindy