United Brachial Plexus Network

A recent post to Francine brought up the question about caps needing to be re-done. I was told that it could have to be done multiple times due to growth and it not holding, but not sure if that could mean twice, three, four or more times.

1) Has anyone ever been given an idea of HOW MANY times it might possibly need to be re-done between 2 and 17? (I know it will vary per child, but could it possibly be needed to be done like 4 or 5 times?)

2) How long has the caps surgery been done for? If it has been 2 or 3 years and some kids have needed it done 2 times already, could it possibly continue to be a procedure that is needed every 3 years or so until the child stops growing?

3) Is there anyone out there who had this procedure done like 3 years ago, and it looks like it is still holding fine?

Thanks.

I have such a big struggle with this same thing. I have been told by TCH that my son needs the caps surgery, but I worry about it not taking and having to do it again and again. The Mod quad was such an easy decision, he was gonna gain movement from it so we did it. The caps surgery (my opinion now) is something that may or may not work for your child, it seems so ify. I hate to have my child have surgery if its NOT gonna work. Its been 2 years now and I still havent felt good about making that decision to have it done. I'm gonna see the drs at the NY picnic so maybe they can help me with the decision. My sons does not complain of pain in the shoulder and can function with the movement he does have. I worry about loosing movement. Anyone else want to comment about caps that had it done.

This is my opinion - Maia was dislocated - she was in pain from the dislocation. Other doctors we spoke to felt that it was ok to give up on the joint and I was NOT going to give up on her joint, especially because it was causing her so much pain. I wanted her to have another chance at creating that socket for herself so that as she got older she might not have conitnuing problems with it (due to re-dislocation or arthritis, etc.)

We are very careful with her - as careful as I guess you can get without putting your kid in a closet BUT things happen. And you have to keep on moving the arm so that the joint DOES get created. So we are getting her that shoulder garment/brace from Ruth Cofre in Chicago that will hold her humerus and scapula in place. Hopefully -if it works the way promised - this brace will reduce Maia's risk of re-dislocation and maybe Maia will NEVER need to have another caps and just maybe she WILL grind out that joint for herself.

For Maia - in my opinion - doing caps was NOT a choice. It was something we HAD to do to repair a problem. I viewed it much like - if you break your arm you're going to have it set by a doctor and put in a cast....would you ever choose NOT to have it set and casted? Why wouldn't I choose NOT to have her bone put back in it's rightful space and tendons tightened to hold it in there.

just sharing my thought process....everyone makes their own decisions based on their own thought process

-francine

ps - we will be having this brace made at the end of March - we're going to TCH for it... I will certainly have a page up on it as soon as we return....

http://www.arkpcb.com

Ruth Cofre

I think that it is a much harder decision if there is NO pain to begin with. Do you put your child in pain through surgery to try to prevent future pain that might or might not happen? That's the difficult part. When there's pain - I'd think the solution would be much easier.

I often wonder how many older adults have dislocated shoulders without pain but have never found this site -mainly because there wasn't a need to seek out help for something that wasn't bothering them.

Christy

Just came back from picking up Maia and remembered one other piece that we were told.... if the bone goes in and out because it's really loose, then two things can happen.

First of all - will the joint ever get created the way it should if the bone moves in and out and secondly - what if it keeps on moving in and out and there is a grinding of bone to bone (reason for arthritic condition) and then eventually it eats away at the capsule itself, herniating right through it. I remember Dr. Nath telling us that those are the cases that may not even be able to be repaired because the capsule is too damaged. So sometimes being in pain isn't the only reason to have something like this repaired.

I'm not saying any of this scare anyone or convince anyone to do the surgery - but it's good for you to have this information so that when you do talk to your doc, you can have this list of questions to work with, get their opinions, and then make your decision.

I don't envy anyone making a decision about any surgery. It's just a horrible thing to have to do and I'm sorry that we are all put in this position in the first place.

-francine

Kelsey was subluxed, not completly dislocated. She wasn't in pain from it. We decided for her to have the Caps surgery to fix what we could while we had the opportunity. (didn't someone post a while back that their older child couldn't have the caps procedure done because they were too big?) Kelsey came out of her splint and we were shocked by the way she looked! She couldn't put her arm down, it didn't look natural or anything. As soon as she could she was in the pool everyday and doing her therapy exercises. Her shoulder is at normal range now for strength. For us this surgery has worked beautifully. We are still careful about her shoulder, and keep her off the monkey bars (we had a close call at the beginning of the school year). In our case it was the best thing we could have done. So far we don't have any indication that it will have to be redone.

Don't know if this helps or not. Good luck on your research. I hope you find the answers you are looking for!

Nancy

Hi Nancy

How long has it been since your daughter had surgery?

So glad things are going well!

My son had the caps done last Aug. He was 75% dislocated but not in pain. The results of the surgery were great for Nicholas. His shoulder does not droop anymore, his arm is in a much more natural position, he has gained some supination but not full. The main thing it did is place his arm in a more natural looking position, his arm falls naturally down by his side, his elbow is not elevated or slightly bent like it was prior to surgery. He is very functional and does anything he wants except hanging, supporting his own weight. That is the only restriction TCH has given him. For us it was a good decision. Stacey

Kelsey had caps last April. We just started back to therapy today after taking a hiatus. She was in a maintanence phase and her therapist just had a baby. She has regressed some in her function, but not in the shoulder. Her regression is in what little hand movement she had. No one is sure why she has regressed right now.

Nancy