United Brachial Plexus Network, Inc.

I was reading Christy's update and I was wondering if anyone else has an update for when the splint is off? What kind of function lost? Gains in supination? We have 3 weeks to go till Blake's and I'm getting nervous as expected and a lot of doubt that we're doing the right thing(which I believe we are), but this is my firstborn and we've gone through so much with him and I am so not looking forward to going through this for the 3rd time. Thank you...

Of course you have to remember that everyone looks at things from a different perspective...so I can only share mine with you and my perspective of capsulodesis is very black and white.

If a child's shoulder is dislocated, the shoulder joint, which was instable to begin with, is now even more instable and has a much higher chance of severe degenerative disease and the start of other issues starting.

As always, when we have been put in the position of making decisions about maia's surgeries,we try and asses it from the direction of what does her future look like if we don't do this (in terms of degenerative disease and pain and further damage) - and not about what movement she has, loses, etc. If there are any movement gains then we look at it as an added gift.

For example - Dr. Nath told us that in Maia's case, this surgery would cause "winging" - he warned us - and we agreed to the surgery because not having it done would have caused many more issues.

Anyway - just one family's perspective.....

-francine

It all varies case by case. For our son, part of his supination problem was cause by not being able get the shoulder into socket. We have not experience any loss of movement. In fact, the range of motion has been considerably increased and looks really good. Preston was not able to supinate at all. The surgery is less intrusive since they sew the head into the socket and there is minimal to no cutting. The pain and soreness comes from having the arm in the splint. WARNING - after the procedure, our son began therapy again. We think that die to the position of the splint, the bicep muscle was short. Upon stretching, the radial head became dislocated and Preston had to have another surgery to put it back into place. Just watch for it as you go through the procedure.

Good luck - Bill

Natalie is one year post-capsuledesis. Her internal rotation was significantly improved. Unfortunately she did not gain any supination from the procedure, but there is definitely a difference in her appearance. She did have more winging after the procedure was done, but that has subsided. The incision looks like a faint scratch. The airplane splint was a pain, but so far I would say all was worth it. Good luck.

Well it seems like I have missed a lot in the last few days or so..or has it been longer?

Katie is doing failry well. Really well in the pool. She does have a slight contraction in the elbow but I have emailed Dr. Nath and waiting on a response.

I have to say that she has different movement now. Before when she walked it was stiff armed and when she ran I wondered why her arm didn't swing like most of the kids. Well it does now. It just seems like the whole shoulder thing is a lot looser now than before. And the winging is very pronounced and this huge part of her scapula ALWAYS stays up on top of her neck line. Looks weird. She had wrist weakness before but it is very profound now and I don't know the answer to that one.

She learned to crawl in the splint and still tries with her BPI arm straight out to the side. She was able to do it on the elbow at first but she keeps sliding out further and further.

I see a huge need for strength training as soon as the last 8 weeks are up and I don't see her cooperating. She is ready for the splint at night and at this point I don't know how she is going to get through taking it off permanent. It seems to do a great deal in releaving some of the pain or tiredness that she is getting. In fact..she suddenly seems exhausted most of the time now.

Hope God hear's my prayers tonight, not sure how many more of these things this family or this baby can take. Many hopes that all the others are doing well.

christy