United Brachial Plexus Network

Hi everyone,

For those of you whose children underwent primary surgery, what did the recovery look like after your child achieved flicker bicep?

Aria has started bending her elbow slightly. The movement is sporadic and small - but it is there.

After this point in your children's recovery, when did you see hand-to-mouth and wrist extension?

Thank you!!!

mica

Obviously I can't answer your question but that is such wonderful news! I hope Aria continues on this great healing path
It really helps to see posts like this. The waiting is starting to get to me a bit (Harper still has zero movement besides wrist and hand) so seeing your post has lifted my spirits.

~Lisa
Mom to Harper, LOBPI, 8 months

Hopefully, the posts we'll read later in this thread will make us both hopeful and excited! (Yes, the waiting is soooooooo hard!)

Well Maggie is five and she had her primary done at 10 mos. She didn't regain her wrist at all and she just got her bending the elbow last year. I think she is a different case though because im sure she needs other surgeries, that is why I am def looking into other doctors.

Sorry for my input I know it doesnt help even though I was grateful to get back what she did because before the surgery she had nothing at all.

Jody had primary with grafts at 10months. He has no wrist flexion, slight extension and no hand to mouth. He got biceps about 20 months after surgery. But he also had nothing at all before.

best of luck to your child for a great recovery. The waiting is the worse part. Jody still surprises us and his operation was over 3 years ago.

Mica:
Julie had primary at 4.5 months. Prior to that she had a flail arm and hand. I don't at all recall WHEN things started to happen. I probably should have been better about "baby books" and stuff, but I wasn't (only my oldest has a baby book...). I can tell you that the wrist and hand came much later than everything else. Julie even had modquad with very little hand/wrist function. Her hand is still improving and she is 7 1/2. She has no biceps, so she uses her hand all the time. She is even learning to play the piano (though she really wants drums!). Maybe I subconsciously didn't want a timeline for things. Maybe I didn't really want to think back to how long it took for things to get better. I don't know. I know that decompression of the Axillary nerve coincided with improvement in the hand/wrist function, and that was done in conjunction with modquad.

I think you are in the midst of the absolute hardest part of recovery: post surgery, waiting period. I remember comparing her to other "normal" kids (how????). It was just hard.

I am not sure if it helps to tell you that Juliana is off to sleepaway camp with her siblings. For 7 weeks she will rely on her bunkmates, her counselors, her siblings and herself. Not only did I have to consider a school for the disabled for her (but didn't send her), but I wasn't even sure she would ever speak (ahhh, that is no longer a problem). What I mean is, once you get past this awful waiting period, life takes over and the arm is just part of life. Life is no longer the arm.

Brittany's (from TX) mom used to tell me this all the time and I thought she was out of her mind! And then it all started to fall into place.

Good luck,
I know how hard it is,
claudia

Thank you so much for your candor and honesty. I truly appreciate it!!!


mica

Brandon had primary at 7 1/2 months and we didn't see anything till after mod quad at 14 1/2 months, but before primary he had a completely flail, do nothing arm ! That is about all I can tell you....like Claudia, no baby books....couldn't do it with him.

He is 8 1/2 and is doing wonderfully, surprises us every day. The waiting is the hardest part and I still wish that I wouldn't have obsessed over his injury when he was little..although I woudn't change the way we did things...I lost so much time the first two years of his life !!!
GAYLE

Our daughter had primary at 3mths. we didn't see hand to mouth until almost 1yr. and never wrist extension. She will be 4 in July and just had a tendon transfer done for her wrist and thumb in Dec. 06. she is in a neutral position now and still can't quite get full extension but she can now brush her hair, feed herself and ride her horse so, we call it a success! Prayers and hugs!

Tonya & Stephen Holman

Mica,
I am always hesitant to post my daughters recovery (the last time I felt as if others doubt what I was saying) but after reading the responses that you have received I feel I have to share my daughters recovery. My daughter had primary at approx. 6 months. She had wrist and finger movements prior to surgery but no bicep. In surgery they found a stretch injury to C5 and C6. I can't remember exact time frames but I know she gained bicep within the 1st few of months after surgery. Her surgeons were shocked. It was probably another couple months before she actually got hand to mouth. She was released from PT at 1 1/2 years of age. She is almost 6 now.
I wanted to share our story - you don't hear of it very often but it is possible!
Leslie