Capsulodesis

[browning93]

Is it normal for a capsulodesis to need to be done after the Mod Quad? Since I never heard of it before, I'm wondering if we're going to have to go through it. Mod Quad is the only thing that has ever been mentioned. Trying to get perspective on what type of surgical journey we're going on here. LeeAnne

[Kristie]

It is my understanding that not every child needs the Capsulodesis. It just depends on if your child's joint is dislocated or not. From the info I have been reading it sounds like the kids that are dislocated do end up needing the Capsulodesis. At least this seems to be how TCH does it. I haven't heard of what other BPI specialists do but TCH is usually on the fore front so I woudn't be surprised if others do something similar.
Kristie

[browning93]

We're going to TCH Feb.4th for Mod Quad.Was just hoping this would be the only trip.

[Nicole M]

We had the mod quad and caps at the same time. Dr. Shenaq was our surgeon. He was very nice and he did a great job. Are you going to TIRR I assume? The people there are very nice. Dr. Shenaq explained everything very clearly and he was done with both procedures in a hour and a half. The only problem we've had was asking questions to him directly post op. He doesn't have a public email and his staff handles all his calls. Dr. Nath assisted the surgery and he has been excellent about answering questions. I don't think the mod quad causes a need for the caps. We were told we were just coming in for the mod quad and then he found her humeral head was dislocated while he was working on her. He sewed it back in place and saved us another trip. I really think different children need different things. It all depends on the injury. Maybe if after the mod quad the muscles don't get strong enough with therapy, they are unable to hold the shoulder bone in place and therefore it becomes dislocated. There are other people here who know a lot more than I do about the subject, but that has been our experience. Hope this helps.

[francine]

We were hoping that Maia's primary was the only surgery she would have needed, too.

It's just that each child has such different issues and what happens during the recovery periods differs so much too. One can never really plan the future with this injury. Three and one half years ago I never would have believed that Maia would have needed 3 surgeries and even more in the future. The extent to which this injury goes has been shocking. And it all follows what the words "permanant and severe" mean. I just recently came to the complete understanding that this is and will be a lifelong issue for Maia. That was the hardest thing to comprehend and accept.

Not all children need the capsulodesis. Not all children get dislocated. But as it was explained to us- a dislocation can start off being no big deal but can end up turning into a very severe issue, so severe it may not be fixable if too much time goes by.

My advice to you is to take it one step at a time....and have an open mind about what the future holds.

take care,
francine

[CW1992]

Just a thought. Which is worse - choosing not to have surgery on a dislocated shoulder which 'might' cause arthritic problems in the future but is in no way causing any pain or discomfort at this time - OR - choosing to have the surgery which would 'definitely' cause pain and most likely require repeated painful surgeries in order to prevent the 'possibility' of pain later.

[francine]

Just because a child has a capsulodesis doesn't mean that they have to have any more surgery. We were told that sometimes they need to have it again in a couple of years but that's it. Other surgeries are for other problems unrelated to the dislocation.

I think that you also have to ask, if a child doesn't have pain - would they feel 'any' pain in the shoulder? do they have sensation in the shoulder?

And the next thing is that a dislocation might not just cause arthritis - the bone can actually herniate through the capsule and then repair becomes a very serious issue- sometimes impossible.

I am only a layman but in my mind it seems logical that if a child is knowingly dislocated and is not in pain and does not have surgery - I think I would be inclined to do MRI and/or CT scans at regular intervals to keep a watch on that joint.

-francine

[CW1992]

Thanks for responding Fran. We were told that once the dislocation was fixed, (which 'typically' but not 'surely') improves her situation, she would probably require future surgeries for repeat shoulder capsule releases as well as tendon transfers to assist with supination. The surgeon himself called the surgeries "options" and did suggest an MRI so that we'd know more for sure. In our case my child does have the capability of feeling pain in her shoulder but is in no pain. One of my concerns about choosing to have any surgery is that it will only start the ball rolling for so many more down the road. Of course if surgery was without a doubt 'necessary' we would have it done.

[browning93]

In our case we've gone through intercostal nerve grafts and it was well worth it. Now the Mod Quad. Since I hadn't heard of the capsulodesis before I was just curious about what might lie ahead. She is not in pain at all now and she can feel in her shoulder. The nerve grafts and TES caused alot of reinnervation. I'm just concerned about future pain and the possibility of dislocation has never been brought up. I guess we'll just go with the flow. I'm kinda in a position of EDUCATING her doctors and insurance company as well as myself. I had to fight for 2 1/2 years to get the Mod Quad approved, taking info to doctors offices and sending stacks to the insurance case worker.I still have to constantly fight for therapy and we pay for TES evals out of pocket.I'm trying to set up postop appts.now so I don't have to fight and waste time when we get back. Thanks for all the info. Glad I found the site.Helps to know I'm not alone and have others to learn from! LeeAnne