United Brachial Plexus Network, Inc.

Happy to found this forum...here is a bit about me. I am 28 I am just coming to understand the full extent of my shoulder injury at birth. Due to shoulder distocia the doctor reached in and broke my shoulder to get me out. My doctors told my mom to pin my arm to my shirt as she was released from the hospital and I would be fine. That is all I ever really understood until the last few months no one ever called it brachial plexus. I honestly thought I was one of very few in my situation. At 6 I was seen at the U of W and they recommended a muscle transfer surgery to improve my range of motion. At the time it was first recommended to my parents it had only been done a handful of times. My parents waited til I was 8 and I had the surgery at Shriners hospital in Spokane, WA it was preformed by Dr. Bronsen. I did about 2 months of PT following the surgery. Right before my 18th birthday after I graduated high school Dr. Bronsen did a humeral osteotomy and then about 6 weeks of therapy because the surgery left me in a wrist drop. I have regained most the function in my hand although it is still weak. I regret the second surgery because it has not provided me much benefit mostly just pain. I don't have much external rotation and I unable to straighten my arm completely at the elbow. I can bring my arm to about my forehead but I have lost the ability to put is behind my back due to my second surgery. (I liked the groups discussion on being handcuffed I have often wondered that too. Lol!) I would say I am stronger then most doctors expect when they examine me. I guess not knowing the extent of my injury may have been a bit of a blessing in disguise. I have never let it stop me from trying things. I am married and the proud mommy of a 3 month old daughter, 3 year old son, and 11 year old step-daughter. Sorry that was soo long winded! Here is my question part... because of the bone deformties in shoulder I am in quite a bit of pain because my shoulder slips in and out of socket. I have a severely mis-shapened glenoid and humeral bone. I saw one specialist that recommended a reverse total shoulder replacement but then a more specialized surgeon that disagreed. The second surgeon is Dr. Matsen at U of WA and he litterally wrote the book on reverse total shoulder replacements. So I am inclined to think he may be right. However, when I asked him what to do about my pain, he told me to stop using my arm. Seriously. I can't how will I work I already do a really low impact job but even typing puts me in pain or how will I pickup my babies? So anyone else been here, do you know where to go from here? Thanks for listening.

Hey Riverwalker,
Im Amy, also 28 years old with a couple little ones (2 and 4) and a couple older step children (12 and 13). There are some newer reconstruction surgeries available for shoulder deformity. I met with a team at the Mayo Clinic in MN when I was looking to see if my shoulder is good or not. Lucky for me it is formed well. I just wanted to warn against not using your bpi arm due to pain as your other arm will wear out FAST! I would suggest starting to dictate (google chrome has a free extension called dictanote) I played very very hard and my left arm is wearing out super fast which really worries me as I am only 28. That seems pretty young for these issues.

If you havent discovered baby wearing yet, its a life saver!

for pain, if you can afford it, PT or OT (my preference is OT as they are trained to problem solve every day activities) really helps with pain management. I use kinesio tape a lot for pain management.
Best of luck!
Amy (28) ROBPI from MN