United Brachial Plexus Network, Inc.

I was hoping someone might have some information. My daughter, who is almost 7, had a nerve transfer performed to repair an OBPI of her left shoulder when she was 9 months old. She regained a lot of function and no longer requires physio (she stopped at 3 years old). She will never be able to supinate her left arm. I was told that all she needs now, for the rest of her life is to be followed every 5 years. At our last doctor appointment, I inquired as to the difference in lengths of her arms. I was told that her affected arm is not actually shorter but it is sitting in her shoulder socket differently and that is why it appears shorter. I no longer believe that. There is such a notable difference now that I fear her humerus is not growing properly. I measured and compared the two sides and her left side is at least an inch shorter from shoulder to elbow than her right. There is no measurable difference from her elbow to wrist. Has anyone else experienced this? I am worried that as she really starts to grow, the humerus will be slower to grow or the growth may be so retarded that it will be grossly obvious. Thanks for any help.

My son in 7 and his arm is shorter too. I was told that this is just the way things are. His arm is probably about an ince shorter too, however, he has a slight elbow contracture that affects the way I can measure. Call her surgeon and see what they have to say. Their may be a new surgery to help correct the problem. Gayle mom of Brandon 7 ROBPI

Mine is about 2.5inches shorter (I am now 30 yrs old).
Marieke

My son also had the nerve surgery at 7 months. He has also had 3 other surgeries. His arm is slightly but not that noticeable. I would say less than 1 inch shorter, but I was always told it was the way he held his shoulder. That is why we just had the triangle tilt surgery in Houston with Dr. Nath. Who did your daughters nerve surgery.

She had her surgery done in Toronto at Sick Kids. She does have an elbow contracture but I only measured from her shoulder to her elbow. I hear about other surgeries that are done for these kids. I certainly don't want her to have to undergo any more. Especially at this age. But I want to make sure that I have all my bases covered and not find out too late that I should have been more proactive sooner rather than later. Thanks for all your advice. She really has been leading a great life but every once in a while the Erb's pops up in our life. She is even learning to play the violin backwards!

How did the surgery go for the tilt? I heard that the surgery does not have any research to back it up.

Thanks

The Tilt has a ton of research to back it up. Just go to Dr. Naths weblog and you can read all about it. My son had it done 18 months ago and the results were AMAZING! You can also e-mail Dr. Nath for all the info on it. Dr. Nath would never do a surgery without being certain your child needs it. He thoroughly researches before he does any operation. I mean every surgery ever done had to be tried on a few people before they figured out if it worked or not. With the tilt he is continuing to see great results.

I was told that sometimes the arm is shorter or smaller b/c our limbs grow in response to being used. The less you use one limb the less it will grow. For example, in paraplegics their legs tend to be short and small (not muscular). I could be misinformed, but could that be a factor as well?

If you count the acromioplasty (the pre-cursor to the Triangle Tilt) the TT is still only 3 years old. A little caution as to its being a long-term solution is in order.

Kate


Message was edited by: katep

I didn't say it was a long term solution. But really how "long term" are any of these surgeries. All the amazing doctors all over the country are learning everyday to help our babies. I am so thankful that there are surgeons out there who are willing to try new ways to fix these problems our children face. I Thank God everyday that these doctors are willing to research this injury and put so much time and effort into helping our kids. I mean think about the first mom 15 or so years ago that tried the first primary surgery. Thanks to her we now know what that can do. And that goes for all the surgeries. Think about the first person who ever got a heart transplant. I'm sure they had their doubts and look at where the world is today. I don't think anybody is claiming that the TT is the permanent cure to all BP injuries. But who are you to say it's not a great solution with the technology we have today. I for one was not going to wait 10 years so I could see every kid have it done but mine, and by then it be to late.