Re: Bobbi does nees caps surg...advice?
Posted: Sun Mar 23, 2003 12:13 am
I think your questions are great and none of us should ever feel the need to apologize for asking anything that is on our mind. I can share what I do know, but I don't have all the answers. No, this surgery is not brand new. I am not sure when it was first started but I do know that Pearl has been doing it for about 3 years. Kozin has been doing it for approximately 2 years, and I am not certain about Waters. I know Pearl has done around 60 or so. I don't know the exact numbers of the others. I know they have done the surgery on all levels, from those who are mildly subluxed, to my friend's son who was basically completely dislocated. I think what is MOST encouraging about this procedure is that it really appears to be working and doing what it truly intends to. It is allowing the humeral head to go back into the glenoid and it is actually staying there overtime and as the child grows, at least I know it has been for the past 3 years. With this injury, one never truly knows what tomorrow may bring, but the doctors that perform these surgeries are very confident (but hey, aren't all doctors, or so they act that way). I think what matters the most is that these surgeries aren't having to be redone AND the shoulder joint is KNOWN to be developing much more normally which is actually being confirmed from follow-up MRI's and ongoing research. I am NOT saying that caps are never working, I would just prefer to try a less invasive procedure in which I would not have to worry about redislocation by swinging on bars or someone pulling on my child's arm. The fact that it has yet to have a need to be repeated in 3 years says a lot to me and that it is closely being researched on each child (at least by Kozin). Something else worth noting is that this procedure is also acheiving the goals of the mod quad or other muscle surgeries. Sometimes it is combined with a transfer and other times the child may just need the release. For some the idea of one surgery to address muscle issues and subluxation issues sounds wonderful, compared to the need for 2 different surgeries (like muscle trans/release and caps surgery being done later) and a high likelihood of repeat cap surgeries needed.
Hopefully, some people can share findings from 1-2year post cap follow-up MRI or CT studies.
One question I do have, and perhaps Jaime can help me. When you say 50/50 chance of the caps surgery working, I am not clear on what that means. Do you mean 50% chance that the sutures will hold the humeral head in place in the glenoid and that the child will not longer sublux or dislocate? Or do you mean a 50% chance that the joint will actually begin to remodel and develop normally?
I think all of this is exciting and hopeful. I think it is wonderful that doctors are working hard to improve the treatment for our children. I am very hopeful that as all of these specialist begin to work together, they will in time find the best ways to treat our children, or at least precious bpi kiddos to come!
Thank you.
Hopefully, some people can share findings from 1-2year post cap follow-up MRI or CT studies.
One question I do have, and perhaps Jaime can help me. When you say 50/50 chance of the caps surgery working, I am not clear on what that means. Do you mean 50% chance that the sutures will hold the humeral head in place in the glenoid and that the child will not longer sublux or dislocate? Or do you mean a 50% chance that the joint will actually begin to remodel and develop normally?
I think all of this is exciting and hopeful. I think it is wonderful that doctors are working hard to improve the treatment for our children. I am very hopeful that as all of these specialist begin to work together, they will in time find the best ways to treat our children, or at least precious bpi kiddos to come!
Thank you.