Bobbi does nees caps surg...advice?

[admin]

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.

[julie715]

I don't know much about the arthroscopic procedure and would like to know more.

Tristan just had caps at the same time as his MT. He was fully dislocated (posterior) - we don't know exactly how long. It was diagnosed in Nov. with a CT scan, and surgery was in Feb. He did not seem to be in pain. Our surgeon told us about the laxity in the back of the joint, as francine mentioned. She surgically reduced this tissue. Her opinion about the prognosis was that is depends on the strength of the muscles supporting the shoulder joint.

Tristan is still in his cast so we'll see how it goes.
Julie

[marymom]

seems to me if there are not recurrences with the one, and there are with the other, than it just makes sense...
otoh, who do you believe? Are there documented stats out?...showing no recurrences of dislocation/subluxation with the newer procedure?
Not that believing the moms isnt enuf for me, Im a big believer in mom proof- Im just curious.
This is pretty huge I think.

[Francine_Litz]

Ok - a question...

if the back is loose and the bone is falling out the back - how is cutting open the front going to help... so logically I see a new opening at the front and the bone can slip back in with this new opening - but what's stopping it from falling out the back? I'm seeing the front loose AND the back loose and now that sounds like more instability not less.
And doesn't it take cartilage a huge amount of time to heal? I know I'm just probably missing something - I hope that you guys can fill in the missing pieces.
Thanks,
francine

[Francine_Litz]

ps - what's the name of this surgery? does anyone have any links where I can read more about it?

[admin]

can i get more info on reaching these doctors. jacob is 9 and had caps at 7 but didn't help. dr nath wants to do osteotomy but i decided not to. he has not had any MRIs and is very subluxed posteriorly as well as internally rotated. he had mod quad at 4. this procedure sounds extremely interesting. we are in texas but will go anywhere. why isn't dr nath doing this procedure here?

[m&mmom]

Here are some answers from Dr. Kozin. I had made a typo in my previous post and didn't realize until I re-read it today. The surgery has been around for 3 years.
How is the humeral head held into place once it is pulled forward? external
rotation of the shoulder moves the head foreward, held in place by keeping
rotation or adding tendon transfer

What is done about the laxity of the capsule posteriorly? nothing at all,
will tighten over time

What about the nerve injury caused by endoscopic techniques? must be careful
of axillary nerve

What is the long-term success rate and how many have been done? we have done
them over the last year, about 15, mike pearl in CA has done them over the
last 3 years, about 50 or so

Why is this method preferred over the caps? the caps does not address the tight anterior capsule!!

Cindy

[jacobsmom]

i would like more info on these doctors. it sounds good for my son. he is 9 and had the caps at 7 but it didn't help. dr nath recommended osteotomy(to rotate the humerus because of the internal rotation) but i didn't want to do it because i can't see how that would help. have you done this new surgery already? i will go anywhere for jacob if it will help.

[m&mmom]

You son sounds like a friend of mine's son but he's only 6.
My son will be scheduled for this procedure once an mri is done.
We had our appointment with Dr. Kozin @ Shriners, Phila. You can also consult with Dr. Waters @ Boston Children's.
Cindy

[jacobsmom]

are you having the mri done at dr kovin's or your son's regular doctor. how long does it take to get an appt with him. can you give me the number to his office and dr waters. i would really like to have him look at jacob and tell me what he thinks. do you know if they are doing this surgery in houston at tch? (probably n0t since i haven't heard of it).