United Brachial Plexus Network, Inc.

I am in the same boat, too. Dr. Nath states Logan needs the TT surgery but I am so unsure, we haven't needed anything done for 5 1/2 years now. She has full supination post modquad but has severe shoulder drop.
I need to hear some opinions of post op results.
Thanks everyone!!!
I still recognize a lot of your names!! Hope you are all doing fine.
Natalie

I think you need to explore all your options and don't rush into anything. Go for another opinion. You are the parents. Do your homework!!! Good luck to you!!!

i would get a 2nd maybe 3rd opinion. i know it was suggested to us that my daughter have this surgery. we went for a 2nd opinion and that dr said no to surgery. we are going to get a 3rd opinion.

good luck in what you decide,
christine

Mary Jane -

what was your sign? dr. nath wants to do surgery on amanda in a few months, but i'm very torn by the fact that he's the only one doing it right now.

christine - NJ

Our almost 3 year old just had the TT surgery on June 30th. When she came out of the surgery she was throwing up and very uncomfortable and both my husband and I looked at each other and started second guessing our decision to have the surgery. Well, 6 weeks later and now out of the splint we wouldn't have changed our decision to have the surgery. Reagan is able to supinate which she couldn't do at all before the surgery. She holds her arm down to her side like the non-injured side, not elbow sticking out. When I use to put tank tops on her the strap never stayed up on her injured side now it does! The sloping is minor and her winging has decreased dramatically. It has only been 5 days out of the splint and we can already see a major improvement...thanks to Dr. Nath! I wish you all the luck in your decision making. You know what is best for your child.

Thanks to all for the comments, I actually talked to Dr. Shenaq about a year ago when he came to NC about my daughter and at that time we talked about the surgery but he didn't want to recommend it because of the lack of research for long-term. I guess with my daughter she would get better results from decrease in winging and shoulder dropping; I don't expect supination because her elbows are dislocated and they don't recommend anything with that. Thanks to everyone for your thoughts and comments, it helps alot.!!

there are other drs doing the TT, but they are not calling it TT, dr nath is patenting the procedure but others do the procedure under other names

As Christi said, my daughter had the same issues as her daughter. Straps would hang off her shoulder. She was so picky about her clothes before since everything fit her left side different. Now she is willing to try different types of clothes because they fit better. Her elbow no longer flares out to the side, her winging is gone, he arm is straigter than it has ever been. I will admit that when we took the splint off 3 weeks ago, I was at first shocked at how tiny her arm looked, but we started doing passive ROM over a week ago and she is improving every single day! I would definitely have the surgery if I had to chose all over again.

I hate to be a naysayer, but it worries me that so many of these children are having this surgery and we have no idea the long term effects because the research hasn't been done long term. Other BPI specialists are actually warning people against this surgery because of this. I am just sharing my opinion and wonder if anyone else shares the same fears. If it really works, I think it is a wonderful, spectacular procedure. I would LOVE for my childs arm to hang properly (my child has a severe injury). Call me skeptical, but it seems too good to be true. I want to see some long term data before I allow my child to undergo this type of procedure.

Well, you have to weigh what you (your child has for function) against what the possible affects/outcome could be. For us it was easy. My daughter had barely any function of her right arm and now she (9 years, ROBPI) has gained a lot of function. She's had three surgeries to date(all with Dr. Nath) and she's done beautifully with them.

Not all children require surgery and not all children that do require surgery have multiple surgeries. It depends on the initial injury, to what extent and to what nerves.

My daughter was not operated on just for cosmetics, it was for gaining function. I have no regrets whatsoever. Everyone has to go with their own preference and what they are comfortable with.

Peggy