United Brachial Plexus Network, Inc.

Guest, (I feel so funny writing as "null" and addressing people as "Guest!" Such is the life of those of us in litigation ...)
Anyway, to answer your question- Our little girl has supination both with arm bent and extended.
Rachel, just to encourage you-at first, all we saw was the neutral arm, like Amanda has. The supination came a little bit later. So there is still hope that that will come in time for her. I really hope so.
What is so neat is seeing our daughter actively trying things where supination is involved. She is doing more fine-motor activities. She's like "hey I can actually do this?" as if she never noticed that other arm could move.
At any rate enough about us. I am so glad to hear from others about your children. Each one is so precious and we must thank God for the amount of recovery each of them get.
Kath, I wanted you to know your posting made me cry.

Supination is so important. I realize it more and more every day as my child gets older. Nicholas is 6 1/2 and was scheduled for the acromioplasty for late March and was cancelled. Supination is the only thing he can not do and which keeps him from doing many other things kids his age can do. He is mentally ready to have it fixed. He has had two surgeries at TCH so far and he would rather be anywhere but there having surgery. However,he said to me when I told him he did not need the surgery. He said, "Never, you mean I will never be able to do this?" and tried to supinate and showed me with his left arm. It broke my heart. Kids are cruel too. He is in grade K and the kids play a game called 4 square at recess. He had been telling me for about two weeks on and off that they will not let him play because "of my arm" I kept trying to make light of it and saying of course you can play you just join in and get the ball over anyway that you can. Well the rules are that you must hit the ball over with palms up, he can not. So he sat out and watched for two weeks until finally he said, mom, the duty aide told me if I can not play the right way, I can not play at all. I was steaming!!!!! Went to the school the next morning and took care of it, I hope. But how sad and frustrating. There are so many everyday tasks that we use supination for. I am grateful he is so functional just hoping to find something to help him gain more supination. He was trying to play volleyball with his cousins and boy did he struggle with that not being able to supinate one arm. I guess it is getting more noticeable as he gets older and is doing more things, plus he is able to verbalize it now. It is easy for a DR. to say that do not need supination and can live without it!! Sorry so long. Stacey

I don't know what we are doing now about the acromio, my son was supposed to have it done in Sept., but I talked to Lisa T. last week and it is cancelled until they find out more...we are still going to TX, Lisa said there are other things that they can do, but I want to know what...I want to be prepared when we go there and know a little something...I emailed Nath last night and he called me back today and told me that he was leaving Baylor and that Shenaq doesn't do the acromio...I just feel like we are back to square one. My son's shoulder definately needs some work, we had caps done 2yrs ago, but Nath told us last summer that he believes that it only took half way. So now I am so confused about what to do next.

I am so glad to hear about the other children doing so well post acromio...maybe we will get to supinate soon, too...

Blake is going into 1st grade next year and we so wanted him to be not so restricted by now with his mobility...We were lucky to be able to hold him back in t-ball this year again(likin the late b-day!!) He had one practice with baseball and it was more than mommy could bear with all of the kids asking "why can't he even throw a grounder?" We'll try again next year with coach pitch. He used to throw with his BPI arm, but now we are letting him throw with his non-affected arm so he can have better control over his throw.

Crystal

Crystal,

I just wanted to let you know that I talked with Dr. Nath a couple of days ago and he said that he would be doing the acromios again - he hoped in Aug/Sept. So, if you feel that that is the right way to go, you may still be able to. He said that he will be doing the surgeries at TCH.

Sally

Crystal,

There are other surgeries that can be done to improve shoulder function that have a longer, more established track record. If it were me, I would be very curious to find out WHY Shenaq is not doing this particular surgery anymore. The reasons might be informative.

Nath, in his private practice, can do pretty much anything he wants, where Shenaq working with a hospital will be more restricted in trying new things. It is up to you whether or not you think that is a "Good Thing".

Kate

Just an update....I was able to see both pre-surgery and post surg. x-rays with my own eyes, truly remarkable!!!!! Major improvements. He has lost some of his ability to fully supinate. He still can supinate, but he uses his upper torso and leans his body into it. That's ok. He had major boney impingement prior to surgery. Dr Nath removed 1 cm from both the clavical and acromio. That's alot of bone. The x-rays prove the bones are now symetrical with the left side. His posturing has improved greatly, he now holds the arm down to the side, in a more natural postion. I am so thankful for that. I felt so badly for him as he used to hold his elbow out to the side at 90 degrees. I pray for the children who have had this surgery and are planning on having it done that they also see wonderful results like we have. & 7 months post acromio and there are no signs of shoulder subluxation!!! YIPEEE!
Good, bad or indifferent, it is important to share experiences with others. Kate, I'm getting this vibe that you are not comfortable with Dr Nath going into private practice. Can you please elaborate on that, have you taken your child to Dr Nath in the past? I'm sure he will have a team of professionals working with him. I don't think it's possible, or legal for one man to be in the operating room. As I stated before, Dr Nath will make his announcment when the OFFICIAL change occurs. In the meam time let's not speculate on what may or may not happen. let's wait and see. That's how rumors get started and things get blown out of proportion. K?

Academic medicine can be a very political thing! I don't think any of us will ever get the whole story. We just have to go with the doctor or doctors we trust and whose methods and surgeries have the best track record, I guess. But that's great to know that Dr. Nath will start doing acromios again. My understand is that is isn't actually a new surgery (it's been done on adults), just one that is new to be tried with BPI kids.

Allison,

I can go into it if you want to e-mail me privately. My opinions are a result of my personal value system, which could be and likely is, different than other people. I don't see how I could answer your question here without starting another board war

Kate


Kate

Kate, I appreciate your response and know exactly where you are coming from. We will probably have Shenaq do the next surgery anyway because of the insurance issue with Nath, it is hard enough getting insurance to pay his fees without the added hardship of Nath's new insurance issues.

Don't get me wrong, Dr. Nath is a WONDERFUL surgeon and has done all of Blake's surgeries to this point, but my family can't afford to come up with an up front fee at this time. I am looking into what else could be done with Blake's shoulder and emailed Dr. Price in NY for his input.

I did REALLY appreciate Dr. Nath calling me himself and discussing his new "move" personally with me.

I guess I'll see what happens and do lots of homework!!

Thanks everyone for the advice!!

Crystal

Acromioplasty is not new for bpi children. It was posted a while back that it was done in the UK and is currently being done at other U.S. hospitals (for example, Cincinnati bpi clinic), just under a different name.