United Brachial Plexus Network, Inc.

Hi,

My son has been recommended for the "ACR". I need to hear any feedback on it, good or bad please! It has been so hard trying to decide on surgeries and doctors! I am so scared thinking I am supposed to know something and I don't, just like his birth all over again. I just don't know if I'll ever trust another doctor.I just don't want my baby hurt anymore

Please reply in email, I don't want to cause an argument! My email is anonymous_bpimom@yahoo.com .

Thank you so much!

bump up please!

Curious - what is ACR?

Thanks,

Jody

It's a shoulder surgery that Dr. Kozin does at Shriner's Hospital in Philadelphia. It is for shoulder dislocation.

Anon,

You are referring to the Anterior Capsule Release performed by Dr. Kozin (and a few others).

This is the only surgery our son has had so far, and it has been a miracle for him. Check your email for more details

Kate

Our daughter had this surgery in Boston with Dr Waters at 2 years and 4 months old and it was a huge miracle for her.

~Krista~ Connecticut

I've emailed you with my response, which is that basically we are very happy with the ACR results thus far. One year post-op now. We go the end of this month for the one year MRI and visit with Dr. Kozin.

Tanya in NY

Guest,

I have seen a number of guest posts on this site which have referred to "failed ACRs". I would love to know what exactly those posts are referring to??

If the judge of a surgical procedure for BPI is that no further operations are needed... well, wouldn't that mean a certain surgeon, who is well-loved on this website, has a HUGE failure rate?? Just to make clear - I am NOT criticizing *any* doctor with this comment! BPI is a complicated injury, with complicated after-effects. The judge of a procedure should be whether or not it actually does what it says it will do... not whether or not it solves every issue in a single operation.

We believed there was value in waiting for natural recovery for our son. No surgery can completely recreate what should have been there in the first place, before the injury, the arm as God intended it to work. But we discovered his shoulder was dislocating and the socket malforming when he was 10 months old. We didn't want to rearrange muscles with him still so young, and yet if we waited, he was sure to need an osteotomy in another year or two. So we chose the ACR to preserve the formation of the shoulder joint, so that his *natural recovery* still had a chance.

With the ACR, a *lot* of natural recovery was revealed. Will it be enough to avoid future tendon transfers? That has yet to be seen. But that wasn't our goal for the ACR! We did because we felt it was the best way to preserve the shoulder joint; everything else is a wonderful bonus. Only time, and followup MRIs of the shoulder joint, will tell us if if the joint is forming properly - if we made the right choice or not. Only time, and natural recovery, will tell us if the ACR was "enough" or if he will need further surgery. We were given a 50-60% chance Joshua will need tendon transfers in the future. For us, a 40-50% chance of *not* needing to rearrange muscles was worth a little "wait and see". If his shoulder malformation is worse rather than better in April (when he has his first follow-up MRI)... *then* I will consider the procedure a failure! But if it is forming properly, but he still goes on to need tendon transfers, and someone wants to point to that as a "failure"... well, I will be pretty annoyed

I wrote you privately, as well, but I felt this should also be said here.

Kate

Matthew had the anterior capsule release a couple of years ago and the results have been amazing. His shoulder has formed nicely and the increased function is outstanding.

Deciding on a surgery was always a difficult process for us. We kept asking questions and getting opinions until we found the procedure we felt most comfortable with.

Cindy

Do any of you have ct scans that show the joint before and after the ACR?