United Brachial Plexus Network, Inc.

(I posted this on the General Board, but I didn't get much response so it was suggested that I post on this board.) This is my first time posting on this board so I want to introduce myself. I am the mother of a 20 month old girl (Renee) who suffered a severe ROBPI. She has had nerve grafting and muscle/tendon transfer surgery at Texas Children's Hospital. I just met with the TCH surgeon at the NYC picnic last month and he is now concerned about her shoulder dislocating and is recommending the capsulodesis surgery next summer. He asked us to get x-rays of both shoulders, which we did. The head of the humerus on the right side is significantly smaller and farther away from the shoulder joint than on the left side. Has anyone had their shoulders x-rayed later in life and does the bone difference remain? (We are trying to encourage more weight bearing activities, but I'm not sure what impact that will have on the bone growth.) Is this what causes the arm to be shorter on the affected side? Does the severity of the injury have a direct effect on the difference in arm length and size? Does anyone know if there are growth hormones that would help with bone growth and bone density? I appreciate any input you can give me.

Hi Julie

I am not sure I could answer any of your questions in medical terms but I will try to help...

I was at the NY Picnic. I am an adult/obpi and my shoulder has alway slooped... I call it the knob missing-- just as Dr.Nath showed in the slide presentation...

I am not sure if any adult/obpi has had this type of surgery because I don't think it was available....

Weight bearing seems to help... I was super active and did lots of wheel barrel play and also other weight bearing exercise. My arm is about 3 1/2" shorter...
I don't know about growth hormones?

I have had two bone density tests in the past 5 years and the doctor said that I have the bone density of a young adult... that's a laugh since I am 62 and no signs of osteoprosis (sp) still can't spell....

I wonder now if all the weight bearing exercise I had to do has any bearing on this out come. I am fair short and light eyed and they claim that people like me are more likly to get osteoprosis...

Wish I could help more.
Kath

Julie:
I'm a 63 year old ROBI and recently had an x-ray of my right shoulder. My right humerous is smaller than the left but not what I'd characterize as significant. I've never had any shoulder dislocation issues. However, my injury is probably not as severe as Renee's. Length differences in my arms is about 1 1/2 inches when measured from the elbows. I can raise my injured arm to about head level. Seems like all of our injuries are different in some way.

John P.

Julie- your question about growth hormones.... TES nighttime stimulation does this very thing... TES is an estim that is done while the child is sleeping. It does not cause muscle contractions - just brings circulation to the arm...circulation meaning blood AND the growth hormones that are excreted at night. It also helps with sensory aspects. I believe it's one of the best modalities for our kids.

If you want more information about it ....
http://www.injurednewborn.com/maia/estim.html
http://www.tascnetwork.net
http://www.mayatek.com

or contact Leslie McKibben PT at lmpt@worldnet.att.net
- she teaches TES concepts to therapists and may have studies about bone growth for you.

-francine

I see you already have great advice here...I e-mailed you!!
T.

Julie
I might be able to answer your questions a little, although I am not medically qualified, I am the co-ordinator for the Erb's palsy group in the UK.
In January of this year, I had the privilege to attend an international symposium of the top surgeons in the field of BPI and this topic was discussed, although rather hurridly and not in any real depth that a lay person could understand.
However Prof Rolf Birch discussed that in his experience of about 600 obpi injuries here in the UK , they had found some correlation between severity of injury and limb length and also between early surgery and limb length.
As far as I understood, he was saying that those with more severe injuries do not have such a good blood supply to the limb which in turn affected bone growth. I think this has been known for some time and all the physical therapists over here push the children quite hard to do weight bearing exercises to encourage the blood supply.
Also he said that in those patients who had nerve graft surgery at an early age, the limb appeared to have less difference in length than in those where surgery was performed later.
He concluded by saying that this study was in no way absolute, and that further in depth studies with larger groups would be advantageous.
So from that very short presentation (he was up for about 3 minutes) we didn't really get any conclusions other than keep up trying to encourage a good blood supply to ensure good growth plates in the bones.
Several parents over here have enquired about limb lengthening procedures and have been told that these could be done at about 18-20 years of age.

Growth hormones are a tricky topic in the UK with the possible link between human BSE and growth hormones given to children before synthetic supplies were available, so many parents over here wouldn't be interested in those for their child.

We are told by physical therapists that a good posture and maintaining good rom will all help to alleviate the difference in bone lengths.
hope this info is useful
Karen

I find this a very interesting subject. Our OT told us that weight bearing was very important to bone growth. Her explanation was that there exists some static response between weight bearing (and moving against gravity) and bone growth.
When Dr. Nath was here in NY, we had a conversation about this as well. It seems there might be some kind of "growth hormone" that the nerves give off. He admitted that studies of bone growth in the bp injured infant were few and far between. If this is true, then it makes sense that infants who have nerve repair earlier will have fewer bone length differences. However, for those kids who require surgery I think some damage is to be expected. Juliana was lucky to have nerve grafting at 4.5 months and her arm is shorter, her hand smaller, and her shoulder deformed. I am taking her for xrays and mri on Monday morning, so email me on tuesday and I'll tell you what she looks like now. She is almost 3 and we did xrays last summer(before she was 2) and the head of her humerous was deformed then too. We were told by a radiologist and by Dr. Shenaq that she was "normal abnormal." In other words, she looked as they expected for a child with her level of injury. I think this is an interesting area of study, though my lack of medical degree makes me a poor candidate for running one!!
Perhaps in the future, more doctors will look into this as they make more progress in spinal cord injury medicine. Perhaps they will find something there that can be applied to our kids.
claudia

Hi Claudia

I think this is also very interesting...

If weight bearing helps perhaps that is why so many adult have various degrees of length.

I did a great deal of weight bearing exercises as a child. What 10 year old is still playing wheel barrel. I did not realize that all play was geared towards therapy. There really were no formal PT for people my age. Once you got any movement you were done and that was as good as it was going to get!... Glad my Mom did not give up....

I wonder if we polled the adult community on the length of their arms and what exercises they did as a child if it would give us any insight into this...
Kath

Great idea Kath!
Karen

I can feel the difference in the size of the bones in my arm although to look at the 2-there is not a noticeable difference in sze. I also can feeel the lower bones in the erb's arm seem to be turned somewhat to the side. I've never been able to talk a Dr. into X-raying them becuase they don't feel it's medically necessary. By the way, I'm ROPI and 49-severe arthritis in the un-erbs hand,carpal tunnel. pronator syndrome. Pat