United Brachial Plexus Network, Inc.

Amy - when she does fine motor her fingers shake like it would for someone with Parkinsons but it's just the fingers - not the hand. When we do e-stim they shake and move involuntarily - fingers go up and down it's different than the normal ones...as if we attached a massager to her hand and turned it on and added more boucne to it.

Hi All, my daughter Danielle,ROBPI, had the humeral osteotomy done by Dr. Waters Jan 20, 2005. Before surgery she was not able to get to neutral. When we had the 3-D MRI done Dr. Waters was shocked by the condition of Danielle's shoulder. From her movements he thought we would be able to have a tendon transfer. After talking it over we decided to have the osteotomy. For Danielle (each case is different) this was the best option. She gained the ability to reach over head and turn palm up which she was not able to do before. She did lose the ability to put her arm behind her back. For Danielle the gain out weighted the loss. She can now fix her hair and her arm hangs more "naturally". She is using her arm more now without being prompted. This was just our case. Everyone is different and everyone has to make the choice that is right for them. Francine you were wondering about how the Doctor's do the osteotomy. I can only tell you that Dr. Waters does leave the "hardware" in and he does cast (in Dani's case 5 weeks). I had to see Dr. Price for a consult. I don't know if the hardware stays in but he said he uses a splint instead of a cast. I hope this helps. Please feel free to email me if you have any questions, dpog117@aol.com - Dawn

Dawn - was that a 3D MRI or did you mean a CT scan? I'm so glad that Dani did so well with it. That's great news!



So this is what I have so far about the osteotomy....

Incision: some doctors do the incision in the front where it can be seen and some doctors do the incision inside the arm where it can't be seen.

Plates & Screws: some doctors plate and screw and leave it in (titanium which is MRI compatible) and some doctors plate and screw and you have to come back for another trip to the O.R. to remove it

Immobilization: Some doctors cast and some doctors do a two-stage soft dressing and then harder splint/protector. Some doctors move the children into a splint after the casting and some don't. (this may be defined per the individual)

Deltoids: I have still have an open question about whether or not they always fracture above the deltoid insertion or not. This answer may hold the key as to why some children gain nothing and why other children gain so much.

Regression: and some children have to have it done more than one time because there is regression.

as more info comes in I will post...

I don't think Dr. Waters does a 3-D MRI. I think Dani you mean just an MRI? It is all 3-D, it is just viewing software that converts it into a 3-dimensional image. There is such a thing as 3-D MRI, but they are for looking at 3-D images of like the heart and stuff like that. If you took everything on the regular MRI and converted it into a 3-D image, well... you'd end up with a picture of your child, since MRI shows everything!!

The MRI check for shoulder dislocation and malformation entails standardized measurements on an MRI angle which shows the glenoid and scapula.

Kate

When Dani went to Boston it was for 1 3-D MRI. That was what the rx stated. We had it done right at the hospital so ther wouldn't be a problem.

Here's a link to 3D MRI brachial plexus images

http://www.tosinfo.com/mri/images/img_gallery.html

Wow! This has really been a great discussion.I wished this would have been available when we were considering this surgery for our son. Although I am truly glad we opted to do the surgery this discussion would have been great info before hand. I would like to share our experience with you all. I don't know if it will help anyone but I still would like to share. For the first 2 years of my son's life I searched for answers and doctors that could help us. When he was 18 months old I found UBPN and learned about all the surgeries and great doctors available out there. I learned so much and also learned I was not alone. After seein numerous doctors and hospitals they all told us to count our blessings that his recovery was as good as it was and they couldn't recommend anything to help us surgery wise. We went to OT twice a week and he was doing great. Until he was 2 he just stopped progressing and his arm seemed to get a little more internally rotated everyday. He looked like a little chicken. Brayden was unable to throw a ball, clap, supinate his hand past neutral, reach high in the sky, put his hand to his mouth to eat and quite a bit of other things. We finally found an orthopedist in Atlanta who said there was hope. After some tests he recommended the osteotomy. He explained to us that Brayden arm had grown kinda twisted and looked like a twizler and that is why he held his arm that way and couldn't do all those things. He assured us he would not lose any function but gain so much more. After much prayer, thought, tears and more prayer we decided to go ahead with the surgery. I was so scared he would lose everything that he had worked so hard for. That August we went to Atlanta and had the surgery. It went beautifully and we came home with our new Ga Bulldog cast. 6 weeks later the cast was removed and much our suprise the nurse gave his cheez its to cheer him up, because he was super scared of the Xray and the cast saw and he fed himself with his right hand for the first time. I just broke down in tears right there. That day we went home with a removable brace. Four weeks later we started back OT and the therapist was amazed. We did OT for a few more months and then the ortho. decided he was good and we quit OT and he has been great ever since. We are so glad we did the surgery and to this day Brayden is still gaining more funciton. I know that was long sorry but I felt I need to share our experience. We go back in February for another check up. I will keep you and your family in my prayers. I know how nerve racking this decision can be. Feel free to ask any questions. I will do my best to answer, I am not as knowledgeable about nerves,muscle and bones, etc. But I can share with you our experience. Thanks for letting me share!

Ashley, mom to Brayden almost 3 1/2 ROBPI

Hey there,

I found your posting very interesting, as I have had 6 elbow surgeries.

My name is Lindsay, and when I was little it was discovered that I could not straighten my right arm. Recently I turned 25 and was given a memory book from my father, with a print out of all my old arm doctor appointments.

I didn't know if your son was still having a problem with his elbow. But if you'd like to discuss, I'd be happy to.

Welcome Lindsay
I'm Mare also from NJ could you please tell me what elbow surgery's you have had & by who and if they helped. My son Frankie is 14yrs old with a lbpi his elbow is contracted at 60 degrees with a permanent ulnar dislocation and bony growth, his arm is externally rotated palm up & can't turn it at all. If you would like you can email me at Tinny61@aol.com He had the modquad in 2006 and now wants further options for the rest of his arm. So far he has seen 4 doctors that gave him no hope.
Thanks for posting Mare