United Brachial Plexus Network, Inc.

TCH is recommending a third surgery for jacob involving an osteotomy of the humerus near his shoulder because he is unable to bring his left arm down at his side and the shoulder is dislocated slightly (the second surgery changed this problem from significant dislocation. dr nath said that not many children have had this surgery except for those with significant problems with bringing their arm down at their side but he did not have any before/after pictures of these children so i could see how much difference the procedure helped this problem. jacob functions very well and is an active 8yo but he is also self consious about his appearance and he does have some physical limitations because of the dislocation as well as comfort (he prefers to keep his elbow at shoulder height and above because this is where the shoulder is not dislocated which causes the joint to stiffen more as well as the bicep) his ot does not recommend the procedure because he is so functional but i am an ot also and can visualize the pros and cons from a medical perspective and think it would help him both physically and emotionally. but being a mother i dont like the idea of putting him through another surgery especially when the outcomes seem to be speculative including any unknown side effects down the road(tendonitis from repetitive movement such as exercise to keep his muscles strong) jacob has full function in his hand but has difficulty turning his hand palm up (supination) because of the angle of the shoulder. please give me your thoughts and let me know if your child has had this procedure done on their shoulder.

Angela,
What does Jacob think of the surgery? I know that he is only 8 but I would try to tell him of all the pros and cons about having this surgery. After he knows all the info ask him what he thinks? I would be careful to make sure that he knows he has a voice in the decision but that the actual decision will be made by you.
Blessings,
Kristie

Angela, my heart goes out to you because I know how hard it is to figure out each surgery and the pros and cons, etc.

Here's a before and after picture of a little boy who had this done. I honestly forgot who his mom is (please forgive me mom) but I will think about it and try to get her email for you. Well it's obvious anyway that this particular child had good results - looks so much more natural.

http://www.injurednewborn.com/index6.html

He's on the last row at the bottom - on the left he is wearing a costume and to the right of that is post surgery. The results for him were quite apparent.

Dr. Nath has been telling us for a long time that this surgery is in Maia's future but quite frankly I can't even go there in my thoughts....especially because we are post capsulodesis right now. One day at a time, ya know?

A group of us from here came up with a list of questions to ask the docs when contemplating a surgery - maybe there is one question in the middle section that you haven't already thought of to ask?
http://www.injurednewborn.com/maia/drquestions.html

I wish you the best of luck in trying to make this decision. I do believe that Josh, at age 8, is old enough to take a big part in this decision too. If I could only remember this mom's name - maybe your son could email this other young boy so that they could have a conversation about it... (gosh think francine!!)

anyway - take care,
francine

I wrote Josh - I meant Jacob! See! premenopausal brain! Sorry!!!

Dear Angela, Our sons physical therapist has mentioned this procedure to me few times in the past few weeks. He just had his second capsulodisis on Dec. 3rd to address the joint dislocation however, as she says although that may put the humorous back in the joint it's like putting a bandaid on the situation because it doesnt address the cause of why the joint is becoming dislocated. She says his joint feels very tight in the front which it would seem would eventually cause the back to again loosen up and we will have the same problem again. She suggested that the osteonomy would reduce the pull on the joint to accomedate the muscle imbalances that will always be there. He's already had 4 surgeries with several procedures done during each operation. To me what she is telling me makes sense but cutting the bone is just one of those things I'm not ready to agree to. It's interesting that you brought this up...it's been on my mind the past week or so. God bless in your search!
~~Joann