United Brachial Plexus Network, Inc.

Well we went to CHOP today and I must say it didn't go the way we expected at all. The Dr there an Othopedic BPI surgeon said no way to limb lengthening too many complications and he said with Frankies limited ability to now bring his hand to his mouth making the arm longer would only make the arm more non functional. He said the x rays showed the elbow was dislocated and had been for years (all the xrays and MRI's taken and we were never told this not even by the Dr that took the Xrays that this dr saw today)this could not be fixed . He also felt the only way to get rid of his elbow contracture was serial casting and that will only get him 15 to 20% more and the contractures will most likely come back in time. He did say he could cut the forearm bone and rotate the bone so the palm faces down giving more use and a more natural look. As far as the hand he said since the muscle tendon transfer done 11yrs ago that didn't work used up all the muscles and tendons and surgery on the palm was already done once there wasn't much to be done and surgery on the outside of the hand would make him be able to straighten his fingers but take away from the bending motion he is just starting to get from his last surgery. He did say that he would move the thumb and fuse it so he can pinch things but I don't know about that my mom had that done and its bad looking and painful in the cold weather and doesn't really work at all. I felt so bad for Frankie he said he was really starting to imagine himself doing things with two hands. I tryed to be strong and told him that we now have two opinions both at totally different ends of the scale and now its time for a third and that will hopefully guide us in the right direction and that also this may be GODs way of saying wait and see what new things can be done in a few years. So now I start looking for other Drs and get their opinions. I just emailed Dr Kozin any other names would be great. Mare

Oh, this is terrible that you have gotten such differing opinions, but I am sure many of us have been in your same shoes. This injury is still in such a learning stage that many providers have different opinions on what is best because knowledge is just coming forth. They all need to share that knowledge, with patients, parents, and other providers. Keep at it...get that third, or fourth, or fifth opinion if that's what it takes. Hopefully you'll hear from Scott Kozin very soon as he is usually very prompt in his responses unless he is out of town. Best wishes.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

I know how frustrating it is to get two different opinions and not be sure which is best. I hope you can find a good 3rd opinion. Hang in there.

Well March 9th we go to see Dr Kozin (just keeping my fingers crossed ) and praying alot. Thanks Ladies it helps to know I'm not alone.
Mare

Hi Mare,
You and Frankie are definitely going to the right p;ace for your 3rd opinion! I'll be praying for you. Hang in there you two.

HUGS,:)
Carolyn J
Adult LOBPI

Mare,
I hope you get a third opinion that will make your decision easier. It is never fun to go through this but remember you are not alone. *HUGS* Hang in there.

You know I just keep thinking about the choices I made when Frankie was little. Maybe if I did go through with the mod quad when he was 5 he would have had a better out come then he did at 14. I now know that at 4 he shouldn't have had the muscle tendon transfer to his hand because it failed and now doctors say if it wasn't done then they could have fixed his hand now. These are all the things I feared would happen when making the decisions then. Frankie says I shouldn't feel bad that I did what I thought was best and that he would never want to have to make those decisions for anyone he loved. I guess I just have to get over it and stop beating myself up. It makes me second guess all my decisions now. Im just glad I now have all of you to talk to and get info I didn't have this 14yrs ago and It makes a world of difference. Mare

It's always so hard when we have to make decisions for our children and even worse when they are medical ones like this. I know I always second guess where it comes to the kids. There is just no way to know what is the absolute best answer for all time. We just have to do what we can and what we think is best at the time. Hang in there. I hope you get some good answers in March.