ACR good/bad

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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admin
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ACR good/bad

Post by admin »

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!


admin
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Re: ACR good/bad

Post by admin »

bump up please!
alyssasmommy
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Re: ACR good/bad

Post by alyssasmommy »

Curious - what is ACR?

Thanks,

Jody
admin
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Re: ACR good/bad

Post by admin »

It's a shoulder surgery that Dr. Kozin does at Shriner's Hospital in Philadelphia. It is for shoulder dislocation.
katep
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Re: ACR good/bad

Post by katep »

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
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Re: ACR good/bad

Post by admin »

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
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Tanya in NY
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Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
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Re: ACR good/bad

Post by Tanya in NY »

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
Tanya in NY
Amber's Mom, ROBPI, 13 years old
katep
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Re: ACR good/bad

Post by katep »

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
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Re: ACR good/bad

Post by m&mmom »

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
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Re: ACR good/bad

Post by admin »

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