United Brachial Plexus Network

My son was born in '88 and and diagnosed with Erb's of the left arm. After immediatly seeing a Ped Neuro. at NY hosp., Manhatten, we were told he would have 90-95% return funtion. We did PT ourselves for many years and had him examinated by the same Neuro and other Ped. Ortho. Surg. I have posted here when the site was new and have followed many of your stories and pushed to have stories on Good Morning America and 20/20, of which I am a cameraperson, about this subject.
Last year we saw a Dr. Andrew Price, NYC, Ped. Ortho. Surg. who recommended rotational osteotomy of the humerous.
Does anyone know of someone who has had this and what the rehab is and results after surgery.

SRube,

So glad you posted. I haven't seen you around before. I have heard some really good things about Dr. Price from a few parents who see him. My son has not had that surgery, but I know there are several parents who have and they all seem to be very pleased with the results. I know Patty's son Michael recently had it done and she was happy, perhaps she will post. There are others as well. Best wishes to you and your son.

If you feel comfortable could you please email me at Lisa@ubpn.org
I would like to talk to you about some of your previous efforts and experience.

Thanks!
Lisa

Hurray! Where do I start other than there are lots of us here who's children had this type of surgery. Michael just had it and he will be 8 years old in two months. We are restarting therapy now and I have to say it's like starting all over again. New worries, new strategies, new concerns. Michael handles it well, but therapy is painful, frustrating and time consuming. On the outside he looks great. His elbow is to his side now so it doesn't stick out. He can supinate now, but his arm is not fully extended yet. I remain optimistic. We go 3X a week for an hour, plus what we do at home everyday. We just saw his neurologist and I had mention TES therapy. He said it usually is done after therapy is not helping. Hmmm. I think I will file that comment in my brain and pull it back out at a later day(sooner than later). I saw the story about the young man in our "Outreach" and it sparked an interest. I am thinking if it can give Michael an edge and help with therapy it's worth it. Heres a heads up guys. I will be bugging you for your comments about this subject since I need more information in order to make up my mind. I hope this helps SRube. I am sure the other parents will give you their input to help you make an informed choice to.

Patty

Hello, My daughter is 4yrs old and ROBPI, she will be going to Boston on Jan 20 for what will probably be a rotational osteotomy. Dr. Water's is going to try a tendon transfer but thinks she will need the osteotomy. The idea terrified me at first but after reading Outreach on the teenage girl who had it done made me feel much better. I will post after she is released and let you know how she did. Good luck with everything. - Dawn

I am the mom of the young man in outreach who was using TES - I don't think that the idea of "don't use tes till after therapy has failed or maxed out" is the way that TES is approaches/used. - you use it in conjunction with therapy and often it is the first step to get the muscles to a point that physio is able to work better. I think it would be especially beneficial to prevent atrophy after surgery . You should post this question to DR.Pape on her website message board/forum and I am sure she will explain about the when and why's www.tascnetwork.net

Thank you soooo much for your post. I will post to the web site you wrote. What you said does make alot more sense to me. In my heart and mind I feel it will be helpful and can change Michael's outcome. Thanks again for your help.

Patty

Good luck Dawn. Michael's surgery was done by Dr. Waters as well.

Patty

Blake had the humeral rotational osteotomy done by Dr. Davino in TX on Oct 7. He was casted for 6weeks and was doing so well, we started therapy again, 60 min land and 60min aquatic weekly and then, exactly 2 weeks after we took his cast off, somebody fell on him and fractured his forearm. So now we can only do rom on him and a little strengthening, whatever we can do with a forearm cast on. How frustrating!!! We liked what we saw, however little we could with the time frame:) Before surgery, he had no supination and couldn't even get to neutral passively, let alone actively and now, he can go to neutral passively with ease!!! We are anxious to begin therapy again so he could possibly do this actively. The arm looks cosmetically better now and we were so excited to see him clap his hands!!! Blake turned seven 3weeks post op. He tolerated the procedure so well!! We will know more hopefully soon!! Talk about starting over!! we really are since the arm fracture came so soon!

Any questions, email me at scotcrys95@cs.com

Poor Blake!

Crystal, haven't seen you around for awhile. I was just thinking of you and Blake the other day.

Kelsey is almost 1 year post Gracilis Transfer, and we are seeing wonderful results!

Nancy, I lurk around here still from time to time. Blake gets his cast off tomorrow and starts OT again tomorrow afternoon. No more rest for him!!! What exactly is the gracillis transfer and what does it do? I've heard it mentioned a lot.

Crystal