United Brachial Plexus Network, Inc.

Hello everyone! I haven't posted in awhile. I was really bummed that I missed out on the Dr. Phil show, I printed the slide show. Does anyone know if you can buy tapes of the show? Anyway that's off the topic I wanted to talk about. We took Tyler (2 yrs old)ROBPI to Miami to see his neurologist Dr. Grossman this week. This was the first time they have seen him since his primary nerve graft surgery at 6months old. Dr. Grossman told me that he had another year to improve. He said that we would see improvement up to three years after the primary surgery. I thought Tyler would only improve until he was three years old. Does anyone know about this? Also when I was asking Dr. Grossman about other surgeries like the muscle transfers or using botox, he was like he doesn't need that right now, you need to wait awhile longer. I suppose that was good news, but I hate the wait and see what happens game. I want to be aggressive with Tyler's injury. I was really glad to see the article on TES and NMES in the Outreach article because we are just now starting Tyler on E-STEM. (His PT thought he was too young before) Anyway, just glad to be posting and talking to everyone. I can't wait until Camp next year, it will be out first and it will be great to be among kindred spirits:) Amber

We were told 6-18 months post surgery we would be seeing results. But, in talking to families with older children, they feel they were able to see results for much longer. The families still chose other surgeries when they came up, but for some reason attributed certain movements to primary and not whatever was the most recent surgery. Good luck with e-stim. I can't wait for camp next year either! Hopefully someone else will have more info for you.
Shannon