Looking for Teens who have had or are considering surgery

[marionm]

Hello,

I posted this message on the Obstetrical Forum and it was suggested that I post here as well.

My 16 year old daughter had a brachial plexus injury at birth. We are considering surgery for her internal shoulder rotation and her elbow contracture.

My daughter and I are very interested in talking or meeting with other teens who have had, or are considering surgery.

I understand that there is sometimes a loss of some function while gaining other funtion. Have you been disappointed by this?

Thanks,
Marion

[Kathleen M]

Welcome Marion

I am glad to see you posted here... I am sure you will get some good information...

Looking forward to meeting you.

Kath

[Mommyanders]

My child is not a teen, but for the muscle transfer surgery we were told that our son would lose his ability to reach behind his back. I've also heard that he may have trouble holding his hand over their heart for the pledge (he's a LBPI, so that won't be a problem) and buttoning/zipping his pants. Hope this helps.

Kari

[Alice--Josh'smom]

Marion Hi, my son Joshua is 5, but I did want to mention that I went to a NJ gathering and met a very nice teenage boy who recently had surgery. I could give you the name of the person who held the gathering maybe she has his name. He was very nice and very proud of his recent surgery. The teenagers mom gave me her business card, I'm gonna see if I can find it and i'll email you. Good luck.

[marymom]

dear Marion, I am very curious about waiting untill teen age to have surgery for my son, we are currently getting adjusted by a chiro about every 3 weeks and looking at surgery perhaps about age 5-7 but...could you tell me about your teen's range of motion and pain occurance? You can email me if youre shy to post, mom@bellsouth.net but I urge you also to post here, never know whos reading that might have the same questions bright blessings

[highlander_1406]

Hi Marion i am 18 years old from scotland. I had a TBPI i have only had it for 9 months but i just had my second operation three days ago. When i just had my injury i avulsed c5 c6 c7 and did a little damage to c8 and t1 but that healed without surgery. On May 17th i had my first surgery which was to reattatch c5 c6 c7 which was succesful apart from c7 which was the one i just got done again. In the first surgery i had two nerves taken from inbetween my ribs and one taken from the inside of my bicep on my bad arm. My second operation the took 2cm of the ulnar nerve and put it in my bicep and i think the ulnar nerve was taken from my forearm well thats what i was told by the nurse on my way out of theature when i woke up,but then i was told they didnt take it from my forearm by a doctor i had nerver seen before so i am not to sure what they done this time. My arm was completely flail but just before this surgery i could move my fingures just as good as my other hand i had a good grip i could move my wrist up to just above nuteral against gravity and when standing up i could push my arm out from my side untill my hand was about 10-11 inches from my side so i am recovering well and i nerver got told i would loose any function while ganing and i think you should go ahead with the surgery but make sure you are going to a proffesional at this type of surgery and make sure you seek lots of proffesional advice about it. My surgeon was Proffesor Rolf Birch from Stanmore hospital in London if you would like contact information please dont hesitake to ask me my email is kevin_anderson84@tiscali.co.uk hope i helped you in the way you needed help

Kevin

[marionm]

Kari, Thanks for your reply. Have you decided to go ahead with the muscle transfer surgery? Are you hoping to correct internal shoulder rotation? Most of our doctors have told us not to do surgery because my daughter is considered to have made a 90% recovery. But my daughter would like her arm to be straight. We saw one doctor so far who says he wants to do the muscle transer first then the elbow.

Marion

[marionm]

Kari, Thanks for your reply. Will you go ahead with the muscle transfer surgery? Will you be gaining external shoulder rotation? My daughter just wants her arm straight. The one doctor we saw so far wants to do the muscle transfer first then the elbow. We do plan to see other doctors. Marion

[marionm]

Alice, Thanks. You can email me at marionm@sybase.com. Marion

[marionm]

Hi, My daughter does not have any pain but from what I have read it seems it can start at any time. My daughter is considered to have made a 90% recovery so over the years our doctors have told us not to do surgery. But my daughter would like to have a straight arm. She can not put her arm behind her head, cannot exernally rotate from the waist, has weak supination and an elbow contracture. She has participated in all kinds of activities like swimming and skiing without too much trouble but cannot climb a wall at the rock gym. Most people do not notice there is anything different with her arm. When she was little we did physical therapy, chiropractor and acupuncture. I believe they made a different in maintaining what shoulder stability she has now.