United Brachial Plexus Network, Inc.

It seems as though no one has had just the CAPS, am I correct? I am not assuming everyone who has the MQ needs the CAPS as has been implied, but I have not heard of anyone who needed just the CAPS. If someone has just had the CAPS I am interested in your experience.

Nettie - the audience here is very limited - have you asked the docs directly about their statistics and about links to families with the preferences you are seeking?

Francine,
Yes, and I am seeking this answer from specifically individuals affected by BPI, not the general orthopedic audience. I guess I know what the answer is as I have asked this question several times over the course and NO ONE can tell me that they are affected by BPI and have only needed to have the CAPS. I have drawn my conclusions. On to another topic.

Nettie - I don't think you understood what I was saying.

What I meant was that when someone posts a question on here, only a small percentage of the people that even visit this board will see your question. And those people that visit the board at all are only a very small percentage of the brachial plexus population as a whole.

Therefore, I think you should direct your question directly to the doctors who are doing the CAPS surgery. They have greater access to a higher percentage of the population and you would get a more realistic answer to your question.

Also - in my opinion - I don't think that you will find anyone that has NO surgery and needed the CAPS because those that don't need primary surgery usually don't have deformed joints. You see the deformed joints in the more severe cases - where the child was not able to grind out a lip on their glenoid.

So maybe the true question revolves around the Mod Quad. But then again, I'm not sure what you kind of conclusion you are trying to draw.

-francine

I am confused. I thought the primary surgery was for nerve damage

My son just had his surgery and he had a muscle tendon transfer and the caps done on his shoulder. Hopefully,this will be it.

Nettie - you wrote "It seems as though no one has had just the CAPS, am I correct?" so that's why I included primary in my post. Yes - primary is for nerve repairs.

Nettie,
I'm confused now!!!!

"I thought the primary surgery was for nerve damage"

The nerves being damaged IS what causes the shoulder to be deformed in the first place. If you didn't have nerve damage you wouldn't have the deformity. Am I just reading this post wrong?
T.

I am still hoping that a few of you are out there that can share your thoughts on the idea that many of us were told that the main reason for the mod quad was to get the muscles in better balance so that the shoulder could develop more normally. We were directly told, and know others were too, that yes the range of motion is a great benefit but that the main objective was for the development of the shoulder joint. So now, I too, am wondering if the mod quad isn't leading to the proper shoulder development that it originally was thought too, and if so then why are so many kiddos needing the caps surgery. I think it is a good point that so far only 150 have had it compared to 1,500 with mod quad, but how many of those 1,500 have been evaluated since they really started doing a lot of these caps. It just seems like almost everyone I know has been recommended to have the caps (all the children I know are age 4 and under). I also have spoken to several people lately who have decided against the caps surgery at this time, so the 150 also doesn't take all these people into consideration.

P.S. I know several who never needed primary surgery (and yes Nettie they had mod quad) and who needed caps so I am not sure about the severity of it and its relationship. It throws my theory for a loop.

Hello,
My son had Mod Quad at 20 months old and he is now 4 and half. He did not have the caps nor is it in his future. His shoulder is very stable. I think it may be to the fact that they used to do Mod Quads at 4-5 years of age but have switched to younger ages.