United Brachial Plexus Network, Inc.

My son is eight months old. We have primary surgery four months ago and we aren't seeing any movement yet (I know it can take a while but it's so discouraging). I don't have a very good feeling about things right now and that scares me. My gut feeling has been right with everything else so far. We go back to Cincinnati in July, which will be nine months after the surgery. How am I ever going to keep my sanity between now and then or between now and getting some movement. What is we don't get movement???? I need some reassurance from your moms and dads out there that have been through this. It's so hard!

Dr. Nath is having a clinic in Orlando in March, which is only about 6 hours for us. Would that be worth going to for a second opinion? Anyone ever been?

I don't know Dr. Nath, but I was going to suggest a second opinion. We see Dr. Waters, but Boston is probably too far for you! If you are feeling something in your gut, you'll feel better if you get another opinion. I know people travel far for Kozin, Nath and Waters.

You sound very discouraged. This injury is so hard. Tap into whatever supports you can right now. I hope things get better soon. Do you have good therapists (OT/PT)that you can lean on?

Brooke,

I e-mailed your yahoo address.

Hang in there - things get better.

mica

I didn't even read the responses yet. I had to post. My son had primary with nerve grafts on 2/14/05. He is just about 2 years post op. Please continue to be patient, I know it's hard. Javier was 13 months post op before we saw ANYTHING!! He progresses v-e-r-y slowly, but steady. All kids are different, but I just wanted to give you some hope. The nerves generate and healing I believe 1 cm per month. Best of luck to you and your child.

Marlyn mom to Javier 3 yo ROBPI

Hang in there. Our children have not travelled the same path it seems, but I wanted to send my support through words to you. Even though my daughter did not receive primary surgery as your son has, I can remember waiting and waiting for any type of movement for months in the beginning. It can be excruciating, the waiting I mean. You're doing the right thing by talking about it to those who can understand. We're here to listen...anytime...as a support. That's what I've always found in my "UBPN Family System."

Tanya in NY
Amber's Mom, ROBPI, 5 years old

It gets better Brooke, I was thinking of posting but I had an extreme case of Pink EYE and couldn't see to type.
Anyway, my son had primary at 7 months and we finally saw something after 14 months. It was long and hard, but well worth the wait. My son is 9 1/2 now and is doing wonderfully.

Dr. Nath for a second opinion. Certainly. His clinics are free and very informative. He will take the time to explain things to you and listen to your concerns !!! GAYLE mom of Brandon ROBPI

Hi, I too am new to the Web site and this forum. My son born in Feb 2005 had an nerve grafting done July of 2005, It took about a whole year to see any improvement. He is able to raise his arm against his chest in a 90 degree angle and that is it he has no finger movements yet and no usefulness to his arm (yet). His Dr is suggesting a 2nd surgery this year for my son which has to do with a lat muscle transfer...So I agonizing over the procedure... Please don't loose hope educate yourself about this injury, get 2nd opinion, or even 3rd opinion... I saw Dr Nath in Orlando last year and he was very informative but I was still not satisfied, I sought a 3rd opinion from Dr Grossman in Miami and still I am uncertain as to what is the best therapy or operations or Doctors for my son. Anyway you are not alone in feeling lost and confused and the "not knowing what happens next" is killing me .. It is a waiting game and unfortunately at the rate that nerves grow that is all we can do is wait.. and lots of ROM exercises .... Keep your chin up...It's hard I know.. but you will see results give it time... it will happen

The nerve grows about an inch a month and as it grows down the arm it grows even slower.... biceps should be about 6" from the neck? it might take some more time to see the first flickers...

If time goes by and you still see nothing you can get an EMG done (they can do a surface one with an electrode) to see if anything is coming through. I felt just like you and at 6 months I had a specialist do a surface EMG on Maia and it showed that the biceps were in fact connected so just knowing that took the pressure off.

This was one of the hardest waits I EVER had in my lifetime. I do hope things are connecting and growing in. Please keep us updated ok?
big hugs,
francine

I haven't posted on this site in years, but I check back once in a while to keep in touch...My daughter is 7 years old now and has a ROBPI. We didn't have any surgeries, so I cannot relate to you in that aspect. We did wait what seemed like forever to see flexion at the elbow (5 months, to be exact, when everything we read said that no movement by three months wasn't good). Please be encouraged that things do move slowly - and possibly at different rates for different children. Also be encouraged that you have a large group of supporters who know what it's like and understand. This board was a tremendous help to me - especially in the first few years. THANKS to everyone out there!