United Brachial Plexus Network, Inc.

I will also add that in our experience, stretching/therapy is such a huge factor....and I would also imagine it is certainly is a huge unknown variable in determining outcomes.

After my child's partial mod/quad we did formal aqua, occupational, and physical therapy weekly for over 1.5 years, we also did weekly swimming lessons. Since then we have gradually reduced the therapy schedule and now 3 years later do swimming lessons, ot 1x week, and pt every other week....plus, of course, all the stretching, therapy stuff, and modifications (meaning things like using a slant board to do homework...etc.) we continue to do at home. We are constantly adjusting the "work" we are doing to the changing needs of our child's body. Some weeks we focus on shoulder, but then others its posturing, or contracture, etc. Growth spurts are particularly challenging because strange new things creep up, but we try to be as vigilant as we can and address the ever fluid issues.

I just wanted to offer further that as a part of my decision to have my child operated on, I asked very very clearly: "Will my child experience a very long term result THROUGH HER DEVELOPMENT?, eg, until she had achieved her full growth, and I was told that she would. That has not been the case, unless the doctor was speaking unbeknowst to me of a specific muscle system ...

My son is 7 1/2 and he had nothing when he had mod. however, now he has everything along with a little bit of behind the back.......not always but sometimes. I purposely put things in his right back pocket so he has to reach back there. I too agree.....it all depends on 1) the child 2) the severity of the injury 3) the OT and PT Gayle

There are a couple of very long-term studies on latissimus dorsi and teres major tendon transer (the muscles transferred in secondary surgeries). They are not very encouraging for long-term functional gains, especially gains in abduction.

Long-term Results on Abduction and External Rotation of the Shoulder after Latissimus Dorsi Transfer for Sequelae of Obstetric Palsy

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

This is a 15-year followup from Gibert's group; either lat or lat plus teres major were transferred. Patients were immobilized in 120 degrees of abduction and full external rotation. They that found "Despite initial satisfactory results, latissimus dorsi transfer to the rotator cuff for sequelae of brachial plexus palsy has a high risk of decreased shoulder abduction in the long term." No mention was made about improvements or losses in internal rotation or adduction.


"Brachial plexus palsy secondary to
birth injuries (subtitled LONG-TERM RESULTS OF ANTERIOR RELEASE AND TENDON TRANSFERS AROUND THE SHOULDER)"

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

Patients were followed for a mean of 30 years (range 25-42). Patients were immobilized in only 45-90 degrees of abduction and external rotation. Their results showed no significant improvement in abduction, and improvements in external rotation that did not last. No mention was made about improvements or losses in internal rotation or adduction.

Both of these studies had very limited number of patients at long-term followup. And it is very hard to compare between what was done 15-40 years ago and what is being done now. But these studies definitely give me pause in considering tendon transfers for my son, who has only 90-100 degrees of abduction, but nearly full external rotation.

Kate

wow, Kate - thanks for posting this!

Juliana had the full mq at 14 months old. I would not encourage a full pec cut--it has so many negative outcomes. She lost ALL internal rotation. Can't come to midline, can't cross over to her right arm, except up to the elbow, can't get behind her, can't put her hand on her hip...and, there are cosmetic issues as well. Her left (affected) areola and nipple are different than her right.

That being said, the mq in and of itself helped with range tremendously. And I would do an mq like surgery again. However, one change that has been made, for many doctors doing mq-like surgery, is that they are leaving more of the internal rotation. Juliana has about 110 degrees external rotation, but 0 internal... I'd trade some external for internal and so would she.

I, too, am glad that the effects of surgery are being investigated.

But remember, each child is different. And, as difficult as that makes your decision, you have to remember it.

In retrospect, I would go more conservatively that aggressively with this surgery. You can always go back in and loosen something more, but once the internal rotation is lost, it is very hard to get it back (I know--we are trying to find a way to do this now).

And as for gaining as you get older--remember that kids arm length to body ratio changes as they get older, so they can do "new" things.

good luck, trust yourself,
claudia

THANK YOU ALL FOR THE ADVISE. I REALLY THINK THIS HAS HELPED IN THE DECISION MAKING PROCESS. WOW, WE AS PARENTS HAVE GONE THROUGH SO MUCH, I COMMEND ALL OF YOU. EVERYONE IS SO NICE, I COME & READ EACH REPLY AND I CANNOT THANK YOU ALL ENOUGH. THANK GOD FOR SITES LIKE THIS WE WOULD NOT BE ABLE TO SAY THAT WE WERE WELL INFORMED IF IT WAS NOT FOR THIS PLACE WHERE WE CAN SHARE OUR STORIES. BLESS ALL