United Brachial Plexus Network, Inc.

My Neuro Surgeon of choice was Dr. Adelson in Pittsburg at the Children's Hospital. My son never did have surgery but I felt this doctor was very competent. I also like Dr. Kozin a lot too. We didn't start going to him until Ian was older (like around 2 yrs of age).

I also sent you an e-mail.

Blessings,
Kristie

Hi,
We had the exact opposite experience with Dr. Nath. We had already been to see 2 surgeons and they were both of the opinion to do surgery by 3 months of age to preserve the muscles in our daughter's arm/hand. She had no movement at all in her arm & hand. She was about 6 or 7 weeks old when we met with Dr. Nath and he felt that it was still too early to decide if primary surgery should be done. He explained that prior to starting his own practice that he had done a lot of primary surgeries but that by the time he was involved in each of the surgeries, the neurosurgeon had already cleaned up the damaged nerves and he just completed the grafting/reconstruction of the plexus. He seemed very conservative in regards to primary surgery and thought that it was better to wait to see what she might get back.

We ended up going with the surgeon we first saw in Atlanta and we are glad that we did. Our daughter's injury turned out to be extremely bad, C5-C7 ruptured and C8 & T1 avulsed. We are glad that we didn't wait because I think we now have higher hopes for more movement possibilities in her hand.

You will definitely find that there is a split right down the middle about doing primary surgery by 3 months or waiting and seeing. I think we finally decided that if we didn't do surgery early on that she most likely would never have any hand movement and if we did the surgery early, no movement was still a possibility but at least we were giving the hand a chance to show us what it was going to do. Does that make sense?

We are now 2 1/2 years post primary surgery and Lucy has sensation down to her fingertips and can move her fingers a bit. She can't grab anything or make a tight fist and we are still working on biceps, elbow flexion, and supination but we still have some time to go. Our surgeon always tells us that it takes at least 4 years after primary surgery to see the full results of the surgery. Our surgeon also reminds us that we do not need to worry about secondary surgery at this point until we see what we are going to get back in the way of function/movement. I hope this information helps! Good luck with your decision.

Carol, mom to Lucy, almost 3!(LOBPI)

First off...Thank you all for the advice and for the several emails that helped us in coming to a conclusion.


We decieded to have the primary surgery here at Childrens Memorial hospital. Dr DiPatri and Dr. Alden perfomed surgery on last tuesday and she is recovering well. We brought her home on thursday and she is doing well.

They removed a very large neuroma and grafted 6 nerves plus 2 nerve transfers. I never asked which ones but I will at her follow up. They said that the surgery went well .

It was the longest 9 hours of our lives waiting for her to be finished...and afterward she looked so swollen that we cried ...

She now is having trouble sleeping but I dont know but assume that its normal. otherwise she is getting to be her normal smily self.

I know recovery will be a long process but we seem to feel we did the right thing at this time...

They could not get to the neuroma (small) that was pinching her hand nerves and they didnt want to chance hurting what limited function she had there already (little gripping and bending)

Thanks again

I am glad to hear your daughter is doing well! My son had nerve graft surgery almost 2 months ago now. He had trouble sleeping for about 2 weeks, can you blame them? I would put him down to sleep and 10 minutes later, if that, he would wake back up. He only wanted to be held. He is doing very well now and laughs and smiles all the time! It is a challenge, and I wish he didn't have to go through this, but our struggles will be worth it if we can aid in preventing other little ones and their families from going through it. Your family will be in our prayers.