United Brachial Plexus Network, Inc.

Anne thank you for replying to my message. I will definitly email you to found out more about this surgery. I will keep Ben in my prayers. Nancy I would love to talk to you more about how you feel about Dr. Klobec. I agree with you about doing the surgery in January. It makes it much easier on the kids. Cathy all I can say is THANK YOU so much for all your advice and support. You are a wonderful person. Christy I would also like to know what the Doctors said to make your final decision on having this surgery. Thank again to everyone, Linda

Linda: actually the doctors have never had to say anything to us. We sought them out in the first place because we knew in our hearts that things weren't getting any better and they were pretty severe. The Dr.s did tell us in their opinions that she did need surgery(ies) but only after we consulted them and had seen problems that told us it was time. For example, primary, she had no return and no function whatsoever at 3 months. Nothing. Mod quad--she could have used this on her pecs at least during primary but as soon as she started getting some return after primary her whole arm was rotated in towards her chest and she could barely move it as it looked like it was bound to her side and chest. Capsulodesis, it looked like her shoulder was melting down her arm and then suddenly like she didn't have shoulder any longer at all. Lots of pain with this too. Pretty obvious signs and in OUR opinion for Katie we felt that if there was help availble and we had access to it ten we did not have the right to take that opportunity away from her. That was our bottom line basically--she had a right not to be injured and to live as normal a life as possible and that was taken away against her choosing. If there was help for her and i had researched and knew it could help at least some then I was going to give that much back to her. As far as the gracillis transfer..the doctor's did not have to tell us even that she was going to need this until we asked what about her wrist and hand--and my first instinct is to say I would not have that done, just as I say I would not have an osteotomy done. I cannot bear the thought s of it. But my heart keeps saying but Christy...look at her wrist and fingers. She's wants and needs more than what she has, what are you going to do when push comes to shove and she reaches the age where she can handle this surgery. I pray so much that her wrist and fingers return as only those of you parents on this board know. But every day I see her wrist turn under more and more, I see her trying to do things, getting weaker and weaker and she has to try and use what elbow strength she has. I see her try to use her fingers and the just splay wherever with little control on her part. no progress is being made whatsoever now. And there is the post a long time ago from one of the adults whose hand did not return and he just so badly wanted to have it amputated so he could use the rest of his arm. Yes, there are many people that live without their hands. But would they choose to have that corrected if they could? The thoughts of all her surgeries tore our hearts out and we spent months researching and soulsearching before we made those decisions. All I can do is the best I believe for her, that is our job. But I can't wait for the day she understands fully and can participate in the decisions. Maybe we should ask Deana (SP?) whom is going to TCH here soon--if you could take a trip back what would you have had done surgery wise? What is it you want in the way of recovery? I wish that I could help you Linda, but see I am just a searching and frightened parent/grandparent just like the rest of the families on here. We each have to search our hearts and go with our guts. Best of luck with your decisions, whatever they may be. Most of all though, peace be in your heart with those final decisions.

Linda; what website? I can only think of Josie and if it is she I did not realize she did not have a good experience (return). Francine..can you help us out with an update from Josie and Ivelese? Could you ask her to contact me?

Christy, That is the website I was talking about (Josie's). Linda

Hi,
My 4 year old son just had the muscle tendon transfer at Children's hosp. in Wisconsin by Dr. Matlaub on Sept. 1st. He is still in recovery but I know at least one other person who has had this surgery with great results. Her son's shoulder was so tight that therapy wouldn't have helped any. Dr. Matlaub said Jacob's shoulder was very tight as well. We just got to a point where he wasn't improving. Plus his original date of surgery was July 7th and was rescheduled two more times after that. We were trying to save therapy visits for post surgery. He actually regressed as a result. Thus I felt more confident in our decision to go ahead with the surgery. I thought any little bit of movement would help. His injury isn't as severe. He sustained a stretch of the nerves. I hope this helps. Email me with any further questions.

Stephanie

Hi Linda, I tried to respond a few times to the e-mail you sent me earlier but it keep bouncing back for some reason - it must be the right address as I just clicked reply - just wanted you to know I wasn't ignoring you - just can't get through. As far as the surgery I have not met anyone that has had it so can't really help you with the decision process - i will keep you guys in prayer that you will know what the best thing to do for Connor is - those decisions are so overwhelming. Love Vanda

Kelsey had her surgery in January and her results have been incredible! You can e-mail me and I will give you my phone number if you want to call me. Also, Kelsey has a page on the injurednewborn.com site:)

Nancy

Hey Linda! This Kimberly, Brittany's mom!! We are in Houston right now. Brittany is having the osteotomy tomorrow morning, Thursday. She is going to have to have the upper one, then in 3 months, the lower. We are looking at doing the gracilles transfer next summer. We saw Dr. Nath today. Last year I had talked to a lady that her daughter had the surgery and she had good results. I will have to see if I can find who that was. I don't think a lot of BPI's have to have this. Take care and we will talk again soon.

Kimberly

Brittany says "Hi" to Connor, I miss you, & I cant wait til our wedding.

My opinion is that you should press your BPI's pediatrician hard for information that you understand on this method...