United Brachial Plexus Network, Inc.

Hi everybody, It's so good to know you are all here for help or advise, not a day goes by without me checking UBPN. For the last 9 months it's been good to know, I am not alone!!!!.......Anyway.....
My baby boy is 9 months , 22 lbs, active, happy, and almost walking!!!!!!!!! Last week is Doc told us we should have a seconday surgery done. Now my question is...so many of you did it and so many of you did not. I would like to know why some parents decide not to perform a surgery, and if some parents regret doing it and why.Thank you
Take care everybody

Hey! I'm not sure if I'll be any help but I'll try. Brittney has not had any surgeries because we didn't know until she was older that surgeries might help her. She couldn't walk until she was 13 months old so little Vance is doing great at almost walking at 9 months!! He is a hefty little guy at 22 lbs already and sounds so active!:) Hope you aren't wearing your back out by carrying him!:) He must be a cute little guy. Personally - I do not regret not going thru with surgery. I noticed that Brittney improved until she was about 5 - 6 years old, then she quit improving, BUT a year later she started to improve functionally again, and over the years after that - she can do things now that she never could before. I think alot of it also was due to her growing - taller, stronger, wanting to do things... (And swim team and sports) This injury is so strange - hard to figure. I hope that someone posts here with more advice - I just wanted to share about us. If you think that he is improving on his own then maybe you might not want to do the surgery - YOU know best! I hope that you get the advice you need!
Christy

If a secondary surgery is suggested, this means that it is already known that your child has muscle imbalances. The question to ask your doctor would be, what can you do to stop the muscle imbalances and reduce the contractures? Can it be changed through therapy, electrical stimulation, splinting, bracing or something else that is non-invasive?

In my personal opinion, one compelling reason to do a surgery earlier than later (if one knows that the problem already exists) is that the child learns compensatory movements and habits form and to undo this is very hard.

I certainly am not trying to sway you toward surgery or against surgery, but I think it's important to know that each child is so different that it might be better if you get multiple opinions from the bpi specialists rather than from us moms. Even if we tell you about our own experiences with our children, your child is an individual with an injury that we know nothing about and our answers might not apply to you.

These are very hard decisions to make.

Our daughter did not need nerve surgery and there were no issues about me having to decide that b/c the doctor told us she just didn't need it. For secondary surgery, we knew it would likely be in her future so I always kept it in the back of my head. I didnt like the idea of surgery, but I knew that if there was something out there to help improve her arm and ROM then I would probably do it. To figure out if secondary surgery needed to be done sooner or later, we had an MRI. That MRI showed that her shoulder was subluxing so the doc wanted to do the surgery asap. We planned it for a few months later b/c we waited for winter months b/c of casting issues. The reason why I decided to go along with surgery was b/c she needed her shoulder joint fixed, and she couldnt get her arm above her head or behind her head. I wanted to try for this as the success rates are very high. Since no children has ever gotten worse from this particular surgery, that made me feel 1000 times better. So to make a long story short, we did the surgery. After surgery she was able to do things that she never did before and her shoulder joint was stabalized and fixed. Would I do it again? Yes, with no doubt in my mind. Her secondary surgery was a miracle surgery for her and it basically gave her her arm back.
~Krista~

Hi,

I emailed you to tell you that I was thinking of you cuz I know this is a difficult time.

Let me know what you decide and know you are in our thoughts.

Chrystal

I love the name, Vance!!! If my daughter would have been a boy that was the name we picked out (hubby's middle name). Anyway we have not had to make the decision about surgery, yet. My daughter is only 4 months old and docs say it is a definate possibility down the road. My heart goes out to you and your family with this decision. Just remember what ever decision you do make for little Vance, know it is the right one!!
Love and Prayers..............Tara