United Brachial Plexus Network, Inc.

My daughter had primary surgery at TCH in November 2003. She was 5 months old then. She has made some progress, but Dr. Nath said it would be six months before we would see any change. Has anyone found this to be true and how many of you have had the second surgery.

My son is seven months post surgery. I have not seen progress yet. My son was only 4mo when he had primary, soon he will be one. I am just giving it time. I have been to TCH for one follow-up visit and just sent in a video, now I wait. If surgery is recommended at this time, we will go forward.

Hi Jill,

The post primary wait was the longest wait of my life! And things did start happening very slowly...BUT the great part was that it continued happening probably until she was around 4 1/2.

It takes a while for those nerves to grow down - they only grow about 1 inch a month and as they go further down the arm, it actually gets slower...

If she was 5 months old when she had primary and he thinks it will take at least six months...your daughter will then be 11 months old... if you don't see progress by then, contact Dr. Nath again. If things aren't progressing the way you think they should be then you can do an EMG to see what is and what isn't connected and in the worst case, they do another nerve graft further down in the plexus to ease things along.... (I don't know too many children that actually had this done however - but I know that they will do it if need be - so that's a safety net for you.) It is known that muscles that are not innervated (connected to live nerve) will die at 12-18 months. So it will be important for you to stay on top of this in a timely manner.

Secondary surgery is very popular... even many kids who don't need primary but have late recovery are said to need some sort of secondary surgery from muscle tightness/imbalances and such. But don't worry about that now.... now you just hang tight for a while and then watch the miracles appear.

Yes - the miracles! They are amazing. It's at that point that you learn the lesson of how tiny things are just so precious and wonderful. Yep! and you'll be doin the bpi dance!! hmmm - do you know the steps? YOU WILL!!

big hugs,
francine

over here in the UK most bpi specialists tell us that we may see signs of recovery within 8-10 months post operatively
in my own sons case, he had a nerve graft at 6 months and he regained elbow flexion 13 months post operatively
keep looking - the signs are so small you may miss them at first - I will keep my fingers crossed for you.
karen

My daughter had primary when she was 6 months old at TCH in June 2002. Before the surgery she had no bicep or deltoid movement. We were told it can take up to a year or more to see results from primary. Anything before six months post op was a bonus. We saw Dr. Nath 4 months post primary and he recommended the MQ for Hannah. We saw a little flicker of bicep at this time but she did not actively use it yet. We did go ahead and have the MQ in November 2002. We saw results from the primary one year later. It comes in very slow, be patient.

Lisa

The rate of nerve growth is often quoted as one inch per month. In fact it is actually an AVERAGE of one inch a month, in some cases it is much faster, and in some much slower. And as Francine says, the rate can change throughout the recovery period. Don't worry!

and we also learned that it is slower in adults as compared to children...

we learned another thing at the symposium and I hope I get it correct...I believe it is called Tenile's line? (sp?) Dr. Pape said that you can actually tell where the nerve has grown to because right below that spot it will be painful if you touch there. I'll look it up and see if I can find anything else on that...

My daughter was 4 1/2 months old when she had her primary surgery for her ROBPI. She had 3 nerves avulsed. The surgery was done at the end of October 2003. We too were told to expect no movement for the first 6months. Since then Sophie has dazzled us with her movement, she only has resistance in her upper arm and some in her elbow and forearm. In the last 2 weeks when she stretches out after a sleep she lifts her arm up off the bed completely and does a kind of backstroke with it.......quite impressive really