Surgery for my 5 mth old on 3rd March, Nerve Graft/transfer

[ltm07]

Hi There,

My son is 5 mths old and he is booked for surgery on the 3rd March, our surgeons at the Children’s have said that there are no avulsions and are assuming that there is just scar tissue. So are going to do a graft/transfer.

I would really love to hear from parents who have a child that has had the surgery and how it went for your bubs and how your child's recovery is now (range of movement, etc).

If you have any photos etc that you are willing to email me that would be great also, so i can see what my lil' man will look like coming out of surgery!!

THanks!!!

[gawilliams]

My daughter just had surgery by Dr. Kozin at Shriners in Philadelphia. She had surgery on 1/31/11 at 5.5 months old. They did an exploratory and she had four out of five avulsions. So they did a lot of transfers and grafting. I cant say what her outcome will be, honestly im scared to death of what it will be. Dr. Kozin believes she will get back about 60% function back in her arm/hand. The most she will probably be able to do is just hold an object. Im going to make another post to update everyone. Please read for more details. Good luck with everything, I know its going to be hard, but these little people (called our babies) are such fighters and survivors.

[mkeimm]

Our daughter had her surgery (nerve transfer) when she was 4 months old, so only a month younger than your little one:) Her c5 and c6 were avulsions and I believe her c7 was stretched.

Before the surgery she could move her fingers and that was about it. Her arm just hung their with her hand in a waiters tip position. Lily is now 17 months old and we have slowly since the surgery seen great results! She can now move her arm up to her mouth but is still unable to self-feed with her affected arm. She can grasp things with her hands just fine, but is unable to supinate very well.

Recently we have seen her able to start moving her arm away from her body as well. She pretty much skipped the crawling phase and was strictly a scooter on her butt-very cute btw. As she transitioned from scooting to walking she did start to crawl a very small amount, but always preferred to scoot. I bring this up because I never really thought I'd ever see this happen. Oh, she can clap her hands now too. Never thought I'd see that either. We just had a year follow up appt from the time of surgery and Dr's said she is still healing from the surgery so sounds like more improvement to come.

We work on range of motion stretches with her in addition to continuing OT. There is talk of a possible shoulder tendon transfer in the near future as well to help get her arm above her head.

I will pray the surgery goes well and is a success!! I think it was the hardest thing to hand my little baby over to the Dr's for Lily's surgery. It was very scary. My husband and I thought it felt like an eternity waiting for her to get done. When she got out of surgery she was very swollen every where and tired. She really slept a lot. I don't think she was really in any pain. I hated seeing all the tubes and stuff they had attached to her. I do have some pics I could email you. Just need your address.

[bpiparent]

My daughter had surgery at 4.5 months she is now 9 months. She could lift her arm up not quite to waist level, but no elbow, wrist or finger movement and she had the waiters tip. C5 and C7 were ruptured whereas C6 was an avolusion. The day of surgery was horrible the Dr did his best to reassure us and I knew it was the best thing for my daughter but watching the nurse carry off my baby was heartbreaking. It was a long 7 hours we did get updates about every hour which helped and seeing all the other parents there in the waiting room made us feel less alone. When she came out of surgery she was tired and swollen and had all kinds of tubes and monitors all over and she was in a cast that looked like a nesting doll. Both her arms were crossed over her chest and in the cast and it went over her head so people said she looked like Kenny on south park. The first time I held her I was so scared and afraid I would hurt her little legs or that she would slip because there was just this solid cast with no arms or neck to cradle. I also have pictures too if you would like to see. She was in the cast for 4 weeks it was much harder on us than her. She rolled and used her feet a lot it didn't seem to bother her much. The nerves were taken from her legs but her legs did not seem to bother her either. I took her places with the cast on (mall, grocery store) I would put cute bottoms on her and most people thought it was a sweat shirt. I didn't see it, to me it looked like a cast and I always thought people were starting when in fact they weren't.
It has been 5 months since her surgery she has therapy 3x a week and she is back to where she was prior to surgery. It seems to take forever but in all my research it takes about 6 months for a child to get back to where they were before surgery and then up to two years to see the final outcome.
I hope everything works out for you and the surgery is successful!!!!

[ltm07]

Thank you soo much guys for your reply!!

In some way it's comforting to kow that there are mums out there that are going throught what we are now!!

[Carolyn J]

ITm007, I am praying for your son, his Medical Team and YOU too.

Please keep us updated on his surgery.
HUGZ
Carolyn J
LOBPI/72 ++