Did anyone lose overhead motion after Triangle Tilt?

[admin]

I agree that therapy plays a huge role in gaining improvement after a surgery. Yet, we are being faced with a problem even though we are working hard with therapy and have been since Ella's surgery in 2004. Prior to surgery she was never able to get her arm behind her back along with everything else that she was unable to do. Today she can do a lot, but she still can't manage to get that arm behind her back. I have been told by our doctor and by a number of therapists that we have to constantly work on this and it will come in. I am starting to believe that it will not come in. As much therapy as we do here at home and in formal PT it just doesn't always happen to make something better or get some back. Would I personally take a 10% chance to lose any kind of overhead function, whether it wasn't 100% lose or not? No. Overhead is one of the most important things and I wouldn't risk it. This is my opinion right now, but to the original poster, you have to talk to your doc once again and get more details about this. The pros and cons have to be listed and you have to determine how good of function and stabality your child has now. Is it worth the chance to lose some overhead? Do you need this surgery for other reasons that will make the injury better that outweighs the chance to lose some overhead motion? It will be a a hard decision, but your gut will give you the answer after getting more info from your doctor and talking to other parents.
Good luck.
~Krista~

[katep]

At some point, you also have to compare surgeries, not just what would happen with and without a specific surgery. Does one surgery have less risk of loss than another, while adressing the same issues, for instance. Does one surgery work better than another? What are the possible risks with each? What are the long-term outcomes? One doctor might recommend one surgery for a specific child, while two others might recommend two other, entirely different, surgeries. Each is making decisions based on a different philosophy, approach, seeing different results, etc. If you just take one doctor's opinion on the different surgical options, you may not be getting the whole picture.

Debating surgeries is not something that ever goes over very well on these boards, but I think you owe it to your child to investigate all the alternatives - including no surgery at all - before you make a decision.

Kate

[Marnie]

My son had the triangle tilt July 28th, he wore the splint 24/7 for 8 weeks and then another at weeks at night. When we first took the splint off I was really afraid that we lost overhead function, I started to notice it improving when he stopped wearing the splint at night time. He is doing so much better now, he still has weakened overhead function, but we are working very hard to strenghten his triceps, and I continue to see him improve. I am so proud of him for working so hard, we do therapy 2x a week and work every day at home. Hope this helps.

[Marnie]

I meant to say 8 weeks at night time.

[Kwest]

> With the increase of internal rotation, she is now at
> higher risk for scoliosis.

I'm interested in knowing where you got this statistic or information. My daughter also has some back distortion and trunk muscle issues and I brought up my concern about scoliosis at a recent doctors appointment and they told me that there is no correlation between bpi and scoliosis -- I was told that the risk is the same as any other girl and only more likely in families who have a history of scoliosis. I'd be curious to know if any of our adult bpis have suffered from scoliosis.

I fight hard to not get freaked out by all the things I read on this board that might result from a brachial plexus injury:-) THANKS!

[Marcel]

My son had 6 months ago, at age of 10, the first surgery. Being from Europe it was recommended us to have both procedures, TT + MQ, in a single surgery.
At this time I can tell you the overhead motion is the one which improved mostly.

Looking back in the past I would say since there is about a risk, it doesn’t matter too much is about 10 or lower or higher, you should consider ALL what the above posters said. For me when I had to make the surgery decision it was easier to put all the stuff I was able to consider as what will happen with my son in 6 months, 1, 2, 5, 10 years in both cases: with and without surgery.

Marcel

[admin]

Kwest, I have been told since day one that scoliosis was a huge risk if you have bpi. I know a couple of kids with bpi who are already having severe problems with it and have body braces. However, at least with my daughter and the other two children, there is one common factor between them and that is that they each have some level of diaphragm involvement. And one more thing, my daughter has hypotonia (low tone). (I don't know if the two other children have that as well.) So we're talking about layers pertaining to the bpi that can all factor in.

Here's the thing though. Everything was status quo until her internal rotation became worse and then the distortion in her back became worse. Another specialist (non bpi surgeon) has told us that the other side is over stretching because of the internal rotation. Yet another specialist (also non bpi surgeon) has shown us how that distortion has affected further down into her body. She now wears a full body support system that seems to be helping a lot.

So I don't have any scientific study but I have proof in my daughter's body. Any layman can easily see how distorted her structure is when she tries to move her internally rotated arm.

I responded to the original post because I wanted to bring out the fact that making a decision about doing the TT surgery might be MUCH MORE complicated than just hearing of a possibility of a temporary loss of overhead.

We have to keep on saying this over and over because it's true that each child is completely different than the next. I, for one, would trade no internal rotation problems for a temporary loss of function without question.

[Kath]

Kim

I have mild scoliosis what ever that means.I never realized it until my PT mentioned it a few years ago.
I grew up at a time when school children were required to sit up straight that combined with my mothers constant reminders about posture I think helped.

I have weak muscles on the right side of my back and scapular winging, it makes sense to me that I would have problems with scoliosis.
No one in my family has any problem with scoliosis and we all have very sturdy bones.
My bone scans come back with the bone density of a young adult and that was at 64.

I wonder if it is connected but really how can one prove it is?
Posture should always be check on OBPI children because of the possibility of a connection.

Kath (robpi/adult)

[Kwest]

Thanks for the responses. My first instinct was that we should be concerned about it and that is why I brought it up to the doctor originally. I guess we will just need to watch closely.

Kim

[admin]

The question to ask is has anyone had the surgery and got all their overhead back. It is my understanding that there is a 10% chance after the surgery things will go back the way they were. What other surgeries are out there is what I am wondering.