I heard back from Texas Friday and they want my daughter to have the capsulodesis surgery, a bicep lengthening and possibly a radial nerve decompression for the hand. I have several questions that I didn't ask Lisa Davis because I was in shocked, so I'm hoping that the message board can help. First, It was my understanding the capsulodesis surgery is to repair dislocations of the shoulder. Which, that has not really been an issue with my daughter she can not supinate but it sounds like reading other posts that a lot of the kids are getting supination, so is that why they would want to do the surgery? Has anyone had the bicep lengthening and the capsulodesis done at the same time? Again, it sounded like from other posts that the arm was in a cast for the bicep lengthening and the capsulodesis is in what looks similar to the SOL splint just with the arm out. So, what do they do in case like this? Also, has anyone had all three surgeries mentioned above together and how did you deal with the recovery. This will be my daughter's fourth surgery and I'm not looking forward to this...I was in complete shock when Lisa D called me because I thought my daughter was doing so well and was progressing along!
Any information would be helpful! Thank you everyone!
capsulodesis and bicep lengthening
Re: capsulodesis and bicep lengthening
my son had capsulodesis and bicep lengthening done 4 weeks ago. He tolerated it very well and we just love to look at how straight his arm is!!! His splint is straight out to the side and he manuevers it very well. His inside of his arm where the bicep lengthening was done is very tender. He had a posterior dislocation and that is why we had the capsulodesis done. He could not supinate and his arm was severely internally rotated. From what everyone is saying post splinting, we are looking forward to see some improvement. We understand that it is a big recovery process and plan on being in the pool a lot post splint. We are still doing sponge baths since he wiggles so much when he is out of the splint and we don't want to take chances of hurting him. He wants the splint on and wants us to hurry up and wash him. He is 4yrs old. I hope this helped a little bit, we are glad he had the surgery done and look forward to great results. Crystal S.
Re: capsulodesis and bicep lengthening
Hi Andrea. Sorry that you received this news and hopefully if you choose to go ahead with it, it will help your daughter in a great way. People are coming back with such positive results from the surgeries.
Maia was dislocated and that's why she had the caps done...but the symptoms she had was pain and severe internal rotation and inability to supinate. Her arm is MUCH different now than it was in terms of positioning. We're not yet there in terms of knowing what she'll be able to do with it because she can only raise it to 45 degrees yet - so we have a lot of time still to do this rehab. It's still sore and she's still scared of trying to move it too much. But that first day the splint was off she had supination - now that's pretty much gone because it's stiff...but maybe in time when she work the stiffness out she'll have that back. We have a lot of hope.
As far as doing all three procedures at the same time - well bravo for TCH for doing this together rather than separately (if the child needs all 3 done of course) because you only have one splinting/casting and one rehab...not three... can't even imagine 3 more after already having 3...ohmygosh, sends shivers down my spine.
So my best advice to you is to keep on thinking about all of this and keep on asking them questions until you completely understand it all and can feel comfortable making a decision about it.
I know you've been through this three other times so you're old hat to this but a while back we came up with a set of questions to ask your surgeon...some of them may be apropros for you to use at this time...especially finding out if there is any function/movement she will lose, etc. The questions are found at
http://www.injurednewborn.com/maia/drquestions.html
hope it helps a tiny bit...
please take care of yourself ok? Do you already have a date?
-francine
Maia was dislocated and that's why she had the caps done...but the symptoms she had was pain and severe internal rotation and inability to supinate. Her arm is MUCH different now than it was in terms of positioning. We're not yet there in terms of knowing what she'll be able to do with it because she can only raise it to 45 degrees yet - so we have a lot of time still to do this rehab. It's still sore and she's still scared of trying to move it too much. But that first day the splint was off she had supination - now that's pretty much gone because it's stiff...but maybe in time when she work the stiffness out she'll have that back. We have a lot of hope.
As far as doing all three procedures at the same time - well bravo for TCH for doing this together rather than separately (if the child needs all 3 done of course) because you only have one splinting/casting and one rehab...not three... can't even imagine 3 more after already having 3...ohmygosh, sends shivers down my spine.
So my best advice to you is to keep on thinking about all of this and keep on asking them questions until you completely understand it all and can feel comfortable making a decision about it.
I know you've been through this three other times so you're old hat to this but a while back we came up with a set of questions to ask your surgeon...some of them may be apropros for you to use at this time...especially finding out if there is any function/movement she will lose, etc. The questions are found at
http://www.injurednewborn.com/maia/drquestions.html
hope it helps a tiny bit...
please take care of yourself ok? Do you already have a date?
-francine