United Brachial Plexus Network, Inc.

Hello message board. My name is Sandy. I already feel pretty emotional about posting my thoughts. My eight year old little girl has a severe right OBPI. The last time she saw the surgeon for the injury she was six. He wanted to do a two bone surgies - humeral and forearm ostotomies and a gracillis transfer. She's had primary surgery and secondary surgery done in TX as a baby. I've been afraid to take her back because I wondered if I was just putting her through more pain and discomfort. I haven't seen any dramatic improvements. Catie has a flaccid wrist and no hand function. The bone in her lower arm shorter than the other arm. So here I am two year later knowing its time to find my daughter help. Catie's occupational therapist had recommending me posting my questions on the message boards to get some opinions. So if you have one (good or bad) I would love to hear it.

Anyone had the gracillis transfer as a child? Did you have a good experience? Has it helped you? Where did you have it done?
Anyone had the upper and lower arm ostotomys? My daughter arm is mostly bent at the elbow with palm up.
Thank you so much

I would suggest that you go and see a BPI specialist and actually I would get a few opinions. In two years the recommendation can change as well as the surgeries that the doctor or doing or not doing any more.

My daughter did not have the gracillis moved, they were going to move it to her bicep but they changed there mind and used the latissimus instead, this was done almost 10 yrs ago at the age of 5. She just had her ulna shortened in Oct of last year and is doing well so far from that.

Best of luck and again I would suggest going in getting several opinions.

Angie

Hi Sandy!

My daughter who is now 13 had the gracilis transfer at the age of 7. This was by far the most difficult surgery, as far as restrictions and recovery time. The process may have changed in the last 6 years, but she went through ALOT to recover. Kelsey had no wrist or hand movement prior to the surgery. She can now pull her wrist back, but not down. She has enough grasp in her hand to hold something large and light, like a yogurt or a remote control. We spent 7 days in the critical care unit at the hospital, with Kelsey's arm wrapped with a sheet to the frame of the bed. She couldn't do any more moving than that would allow. They used skin from her hip to graft over the transferred muscle, then later that skin flap was removed. When we got home, there was no school for several weeks, and no outside play, PE, or functions with large groups of children for 8 weeks. Dr. Klebuc in Houston did the major part of her surgery. She ended up with 2 scars on her leg, 1 on her hip, one large one on her arm just below the elbow, and 2 on her hand/wrist.

Please feel free to e-mail me if you want more specific information. patterson765@msn.com

My son Joshua had the gracillis muscle transfer in July of last year. He is 10 years old. It has only been 8 months, but we are starting to see some improvements in the movement in his hand and fingers. He did have some limited movement beforehand. It was a difficult decision for us, but as we are starting to see improvement, I am encouraged that it was the right decision. If you want to "chat" more, you can e-mail me at sheri.roesler@verizon.net.