United Brachial Plexus Network

Our daughter, after talking with Dr. Nath last month will have to have the triangle tilt in the fall. She had the mod quad with him at 9 months and has beautiful overhead motion. He told us that there is a small (like 10%) chance that she may not get all her overhead motion back. This is a concern. Has this happened to anyone? I would feel a lot more comfortable with our decision if I had some feedback from other people who have already gone through it.

Thanks,
Andrea

I don't have experience with this surgery, but I just wanted to quickly say one thing. No matter what surgery your child may have, the pros and cons are most important. Is the present function of your child good now? Are you willing to possibly lose over head motion? Over head is important and sometimes may outweigh the benefits of this next surgery. I haven't heard of anyone losing this motion from the TT, but like many other surgeries out there today for our children and this injury...there isn't a lot of long term studies for certain ones. If over head is imperative for you I would research as much as possible and talk to everyone you can find who had this surgery as long ago as possible. In my opinion I wouldn't risk a 10% chance of my daughter's over head movement and function. To me that is a big percentage. Ever since my daugther was injured I am not fond of percentages anyway b/c anything to happen to anyone. Good luck.
~Krista~

My son has NOT had TT but I can tell you that, in my opinion, if y ou are happy with your child's progress, sometimes it is best to leave things alone. My son had Primary and Mod Quad and I can tell you that I would never Ever Risk what he has now to maybe get him a little more function. I think that the more they have the more risk that you lose something. I agree 100% with Krista.....you have to research. I recently had a doctor telel me that my son was 90-95% function wise and said that is we wanted his arm not to wing we could so one more surgery, however, he then added that if it was his son, he wouldn't do it. I took that as okay, you can do it, but I would leave him alone. so we are. The surgery the doctor spoke about could be done later in life if my son so chooses. Good Luck, Like Krista, I have never heard of anyone losing permanent function after TT, but maybe just temporary after surgery, however, even that would scare me.....
Gayle mom of Brandon 7 ROBPI !

My daughter had good overhead. Then she became internally rotated and as the internal rotation got worse, and her elbow became more and more contracted, her overhead went away. She went from 180 to 70 degrees in a couple of years.

With the increase of internal rotation, she is now at higher risk for scoliosis. She has a distortion of her back and trunk muscles, bringing one hip up high, making that leg now internally rotated and now she's not weight bearing on that leg (which if that continues will make that leg permanently shorter because the weight bearing grows the leg). Her elbow is more contracted, I can no longer even passively supinate her hand. She's not using her biceps anymore, only her deltoids because the internal rotation has taken away that ability. Her deltoids are being overused and now even if it gets fixed, we have a major habit to overcome.

We agreed to the triangle tilt because the positive extremely outweighed the possibility of one negative. And with the loss over overhead that we were already experiencing it didn't even factor in.

You need to make these decisions based on your own child's issues. There's that old saying that no two children are alike. Ask Dr. Nath specifically what the consequences will be with your child if you decide not to have this surgery. Find out what grade of scapular elevation your child has. Is it a 1 or is it a 4. The Triangle Tilt has much more going on then just simple function. Continued and worsening internal rotation has full body and long term consequences. Just ask the adults about how long term compensation has affected them.

There are many more questions for you to ask before you make this decision. Some children may lose overhead and many more will not lose it. Are there any similarities that can predict who will and who won't? Some children regain it after therapy. Are there any that haven't?

Surgery decisions are hard. NO ONE wants to do surgery on their child unless it's absolutely necessary. Way the pros and cons. Look to the future.

sorry, made a boo boo
way = weigh (at the end)

10% is not a small chance, it is actually 1 in 10 kids. That would not be an acceptable risk to me. Second opinions can help with these decisions, good luck in your choices.

I want to try to clarify some confusion. The 10% refers to the risk of weakened overhead function, not complete loss of it. Children regain the overhead movement through therapy. In some cases overhead movement is as it was before surgery immediately after the splint is removed, and in other cases, especially with older children, it can take up to a year to gain full overhead movement back. The risk of complete loss of overhead movement is a much smaller risk, if any. Ask Dr. Nath about this specifically and he can explain it better than I, but this is how it was explained to me by Dr. Nath.

I am always wary when I hear things like "it could take a year or more" for something to happen after a surgery which has only been around for a short time. Just how long has Dr. Nath been doing the Triangle Tilt? I believe it is only about a year; before that it was the acromioplasty and before anyone says they are the same thing, they clearly aren't. There are many kids who had the acromioplasty previously who are being recommended for the TT so clearly it offers something "new". The (undesirable) side effects may also be new and not fully realized yet. Is there any reason to rush into it, or can the decision wait until the effects are more known?

I would definitely get a second opinion. 10% is a high number and overhead function is one thing I have noticed the adults really miss if they have limited function in that area. There are some great bpi doctors out there getting great results, see what they say, it won't hurt and might help.

I think that therapy might be the whole key here. When my son had mod, I got him therapy at the hospital and I did therapy every hour for 5-15 minutes depending on what he would tolerate that day. I never let him stop using his arm. I am sure that some people think that once they have surgery they are fixed but THERAPY plays a VERYimportant role !!!!1