ACR good/bad

[katep]

Guest,

The 20% was referring to young children who were given only the ACR and then went on to need tendon transfers anyway. Dr. Pearl's recommendation is to do the ACR only in children under 4, and the ACR with tendon transfers in older children. They have seen that 20% of the ACR-only kids end up needing tendon transfers to gain external rotation. That means that 4 out of 5 of their kids didn't need tendon transfers if the ACR was done early.

Kate

[admin]

I would like to thank all of you-especially
Katep but others too-for letting this discussion take place so courteously and informatively. The information here is invaluable to those of us who just want to know what's out there for the kids.
Thank you.

[chrystalhurst]

Krista,

you said...

"I am simply stating that there are differences when it comes to how each doctor describes the surgery."

I am so lost and trying to understand. Can you explain further what you understand the differences to be? I understand that Kozin will do ACR arthroscopically and w/o tendon transfers and that Nath typically does open with tendon transfers but I still don't understand why one doc sees 80% success on ACR's w/no tendon transfers and another doc doesn't. Does your statement imply that there are intrinsic difference in the technical aspects of the surgery?

If I'm just blind, forgive me....trying to absorb..

[katep]

Well, I'm not Krista, but...

I think there basically isn't a lot of data to judge which technique is "best", in which case doctors tend to rely much more on their personal experience and opinion. Dr. Kozin has now seen a lot of ACRs w/no tendon transfers, and is happy with what he sees. Dr. Waters does it differently, but is happy with what he's seen, as well. We had to choose between these two doctor's recommendations, and it was NOT EASY let me tell you. They *do* subscribe to different theories! And on the 80% not needing further transfers number from Dr. Pearl: he may also have a different standard for judging whether or not additional surgery is warranted. It all makes it very difficult to compare.

I am very glad that Dr. Kozin and Dr. Waters are both participating in a multi-center study that is specifically trying to answer these questions of "which technique is best". I know they compare data and are compiling results along with many other clinics around the world. I only pray that the answers will start coming more clear soon, so new parents have an easier time making these decisions.

But it's a fact that doctors will weigh the risks and benefits of surgical intervention differently, and that also contributes to differences of opinion. Part of finding a good doctor for you is finding one who you agree with on a fundamental level; for instance, how important (and worth the risk) *is* that last 10 or 20 percent of function, how "daring" they are willing to be with respect to new techniques, how do they weigh disruption due to time out for surgery versus possible improvement, how do they weigh potential losses of function (from transposed muscles for instance) etc. etc. It's a long, long list! Finding a compatible mate was much easier, for me at least!

Kate

[chrystalhurst]

Kate,

thanks...

you are right...being comfortable is the key thing...if the greatest surgeon in the world cannot communicate to me what he wants to do to my son and why...we need to go elsewhere...

chrystal

[admin]

Chrystal,
You are not blind. It is very hard to gather so much information when trying to learn more about each prodecure that is offered for BPIs.
Kate answered your question perfectly, but I just wanted to add a couple more sentences to explain myself better. (It's hard to do that!)
Since people think that I am writing these posts to go against Dr Nath, that isn't the case here. I see a big difference and one of the main reasons for that is:
Dr Nath believes that the surgery will not benefit a child if it is performed alone. There is a huge debate about this and I know of several doctors who will disagree to this. So I want others to know that you can have the option of having just the ACR without any other work done and there are good findings on results so far. Time will tell more. Also, the doctors don't alawys see eye to eye on what exact tendons/muscles have to be lengthened/transfered. There is not only one way to add to other work besides the ACR if it isn't done alone. Like I said in my earlier posts, you HAVE to speak to each dotor individually to find out the needs of your child's unique injury. It's that simple. I am glad there are a number of options. And I am glad b/c there are a number of different types of residual problems that need to be addressed differently in each child.
I can't describe my thinking any more than that. I hope it helps you understand where I am coming from.
~Krista~

[chrystalhurst]

it definitely helps Krista...

thanks to you and kate for being so thorough in your explanations

[admin]

Just to jump in too, my child has had the acr by Dr. Kozin. He does transfers with the acr if necessary based on the individual child. One other difference based on Kozin's explanation is he will preserve as much of the subscapularis as possible where Dr. Pearl does not. I know when I got an opinion from Dr. Waters also, he said he would do the surgery open and once he got in there he would decide what would get done like rotational osteotomy, transfers or just the acr. I wasn't comfortable with giving him that control during the surgery so we went with a doctor that could give us more precise answers.

[Matt's Dad]

Krista,

I did speak to Dr. Kozin about the surgery.
And I do not feel you are offending Nath.
And basically we agree that the surgeries are the same, the difference is in the success rate.
However, Dr. Nath doesn't say the ACR has a high failure rate. He says another surgery (TT) is required to address the scapula winging. The ACR doesn't address that.

Krista, I do not think you are wrong for thinking the way you do. I didn't post to start trouble with you. You oughta know me by now. I do post things and say exactly how I feel. I respect you opinion, however we disagree sometimes.

Cindy,

TCH and Dr. Nath don't do the mod quad and surgery to fix dislocation, like Kozin's ACR, at the same time because of the splinting. Mod Quad, the arm is up. For the triangle tilt, the arm is down and flexed at the side.

[katep]

Bernie,

When Dr. Kozin and Dr. Waters do the ACR in addition to the tendon transfers, the arm *is* splinted in a statue of liberty position. Splinting doesn't prevent dislocation repair and tendon transfers from being done in the same surgery.

Kate