United Brachial Plexus Network, Inc.

Julie:
In answer to your original question...

I can't imagine, nor do I want to imagine what Juliana would look like if we had not done primary. She had c5, c6 completely ruptured and c7 avulsed. She had very poor hand function and no sensation. She had surgery fairly early--at 4.5 months. I credit our early surgical intervention with her incredible recovery. She has had modquad and biceps lengthening, and we are now looking at caps...but she does everything she wants to.
She is in a regular pre-k program, she does all of the activities, some of which she does with some assistance from her teachers, but they really try to let her do it on her own.
She is funny, bright, sweet, head-strong, stubborn and adorable.
She swims and draws and is working on tying her shoes. She was a big baby and is an even bigger 4 year old!! She has had and continues to have sensory issues and a slew of wacky things that only other bpi parents (and bpis themselves) could relate to!!!
We started to notice a change in her arm about 3 months after surgery--she seemed to notice that she HAD an arm! I still think we are seeing recovery! There are lulls in the recovery, times when nothing seems to change. But that is true in kids in general. As time goes on, you spend more time just "doing" with your kid as a kid, and less time concentrating on the arm and what it can or can't do. I know it is hard to believe right now, but there is a light at the end of the tunnel. And that light, I have learned, is your child.

This is a most infuriatingly individual injury. Why two kids with the "same" injury do not recover the same way is just incredible...That said, I want you (and all of the newcomers) to remember not to compare yourself or your child to anyone else. Ask a million questions, I know that the community of this board will answer every one. But remember that each child and each case is truly INDIVIDUAL.

I hope it helps,
claudia

Julie,

I very rarely post anything here mostly just read to see what's going on but when I see a parent looking for info on primary surgery I usaully share our experience. My daughter, Cheyenne (LOBPI), had primary at 5 1/2 months at Childrens Hospital of Iowa. C5 and C6 where stretched so it wasn't the most severe of injuries but enough to require surgery.
Before surgery she had fingers and wrist function and could lift her arm by the shoulder some but had very little if any bicep fuction. After surgery her arm went back to when she was first born (pretty much totally limp) but she still had hand and wrist function. The doctors usually tell you not to expect any new movement for at least 6 months post op. Cheyenne started having bicep movement at around 4 months post op. By 6 months post op she was getting total hand to mouth. Cheyenne is now 2 yrs. old and has about 95% function. There isn't anything that she can not do at this point. Her left arm is a little weaker than her right but it doesn't really slow her down any.
With all the stories out there about kids that have to have multiple surgeries and I'm sure your doctor has told you that most kids that have one surgery have to have more surgeries it can get be very overwhelming. I like to let parents know that there is the possibility that their child can make it with just primary surgery.
I forgot to mention that she started pt at 10 days old and was officially discharged at around 18 - 20 months.
Leslie

I just wanted to thank everyone for sharing your experiences. I realize every kid is diffent, and (of course) I am hopeful for the best outcome for my child. Leslie, your story gives me some hope that there is a possibilty for just one surgery! Does your daughter have any limitations at all -- is it possible to tell one arm is different from the other?

I'm scared to death about the surgery.

Julie

Hi, My 7 month old just had surgery on the 9th. He took it well. He acts like he's never had surgery. I have no regrets. It is what he would have wanted. If you wait, it might come back to haunt you when he's a teenaget. He is happy, and it does not change his personality. We thought it would. I think he knows we are helping him. Ann

The only thing my son had before surgery was a lot of compensation. He would move his shoulder and fling his arm over when laying down. He had no bicep, tricep or supination. He did have hand and finger movement. He had that from the day he was born. He had primary at 5 months old and 6 months later he had bicep. Now the only thing he can't do is supinate. You can't tell anything is wrong unless you already know or when he runs. It hangs like dead weight when he is walking and running. Primary surgery at TCH is the best thing that happened to my son. It didn't slow him down either. I remember when he finally woke up from the anesthesia he give us the biggest most beautiful smile in the world. His scar is beautiful, and not that visible unless he is red from sweeting or something. Now he is about to have his second surgery in little over a week, (Caps).

Julie,
Sorry it has taken so long to reply to your question. I only get online when I am at work (3 days a week) and do not always come to this website.
Cheyenne doesn't really have any limitations. She is somewhat weaker in her left arm but most of us are weaker on our non-dominant side.
As far as being able to tell the difference in her arm. I believe that those who have seen her progress from very little to where she is now will always see the difference and will always notice when she uses her left arm to do something (parents, grandparents, close friends). I think it is a habit for me to notice when she uses her left arm to do something even though she does it all the time - it always triggers the 'oh look she's using her left arm to do a high five or she's reaching with her left arm to open the door'. As far as strangers noticing anything different with her arm - no I don't think they do. The only way people find out about her injury is when they see her scars and ask what happened.
Hope this helps.
Leslie