United Brachial Plexus Network, Inc.

Has anyone else's children had nerve graph surgery done that didnt work.And your child still has no movement. And can anything else be done. Please Write Back
Thank You

Yes, there are things that can be done. I recommend checking out some of the other doctors. They can, though it is not done often, re-do nerve grafting. Although I was told that after 1 year the muscles start to die, that might not actually be true in kids. Go to our medical resource page and start contacting some of the docs there.

good luck,
let us know how you are doing,
claudia


Message was edited by: claudia

JAvier has a severe ROBPI. He had primary with grafts done @ 10 months old and we didn't see any recovery until 16-18 months after surgery.

Wow, Thanks I had no idea they could redo nerve graph surgery. I'll mention it to our doctor.

That's so great for javier. I am so happy to hear that there is still hope for my Dylan. It has been one year this month since his surgery.

Jessica

hi Jessica,
My daughter Lucy had primary nerve grafting done when she was 3 months old. She is now 2 and her 2 year surgery anniversary will be the beginning of October. She had a global injury meaning that all 5 nerves were involved and they ended up only having 2 viable nerve roots to graft to.

Her recovery has been extremely slow. At 22 months post surgery this is what we know:

-She has nerve activation down to her hand because we know she can feel it when we massage her hand and mess with her fingers.
-She has tricep and minimal bicep. We had her tricep botoxed in March because it wasn't giving her bicep a chance to get stronger.
-We think that she is starting to contract her forearm because we are beginning to see a little bit of wrist extension and her fingertips flicker.

Our doctor recently told us that she had expected a little more recovery by this point but also reminded us and herself that Lucy's injury was extremely severe and that it can take up to 4 years to recover from primary surgery. We were disappointed to hear this and continue to wait as patiently as we can. Just this past weekend we met some other BPI families whose children all had different injuries and amounts of recovery. I'm not sure how old your child is but they told us that between 2 and 3 years of age their kids grew a lot and that is when the most of their recovery occurred. That gives us some more hope.

So in a nutshell, Lucy has minimal movement but does seem to still be gaining a little everyday.

I would definitely seek further opinions to see what other options you may have. Good luck!

Carol, mom to Lucy, 2 years, LOBPI

Oh I forgot to mention- Dr Bhatia (surgeon) and Dr Toor (neurologist) both said that a child's full recovery can take up to 5 years. Not "fully recovered" , but what an individual child will gain. Speak with other docs, you are not legally bound to a specific doctor.

MArlyn mom to Javier 3

Hi, my daughter has had three surgeries; a nerve graft, a nerve transfer, and a muscle transfer. She is now 5 1/2 years old, and has had very little recovery at all. She can bend her arm slightly at the elbow now, but her surgeon said that it's debatable whether she would have been able to do that without ANY of the surgeries. I do believe, however, that my daughter's case is not the norm. I hope your daughter experiences as nearly a full recovery as possible!