United Brachial Plexus Network, Inc.

Clint- THank you for the opinion. I stated that it depends on what type of injury and the severity. If it is bad then someone may try another surgery. If it is 89 to 90% in use-I just ask myself is it worth it? I was told the next surgery if it happened, it could be more dangerous than the last. I guess in my situation I am afraid. I lost my son for over 6 minutes and he was clinicly dead. They almost gave up untill an angel appeared and started his heart again. MY son has "SPells" and that has a part in my decision making also. Good luck Ann

Our 9 year old is considered "high functioning" by her physician who has made brachial plexus injuries her main interest. Our daughter had muscle transfer surgery the summer before she started second grade. The surgeons considered her high functioning also but thought that perhaps the surgery could enhance certain movements. I hesitate to say this, but she lost certain function but gained other functionality "more important" in everyday life situations.

Bottom line, if we could go back and do things over, we wouldn't elect for the muscle transfer surgery. The stress and extra therapy don't appear to have been worth the increased "more important" functionality. We would have waited until she was older and hope for more conclusive preop opinion. That's my humble opinion.

Ed

I think it is time to move this post up because as Lizzy said on a recent post this information is important and new parents need to have all information.
thanks Liz for the reminder.
Kath

I thought I would type another perspective from someone who decided on early surgeries but now have decided to discontinue with surgery.

My daughter had both primary (7 months) and secondary (2 years) surgeries and both were extremely successful for her -- all we have to do is look at before and after videotapes to see the amazing difference. However, just recently (my daughter is now nearly six) a surgeon recommended bicep lengthening and we decided to draw the line. Frankly, we just don't see her very, very slight elbow contracture as hindering her progress and day to day living. We will however, continue to monitor her progress. We also believe that if she should decide one day that she wants the surgery for aesthetic purposes we will certainly move forward.

It was just heart-wrenching for us when she heard what the surgeon recommended and started crying that she didn't want any more surgeries. We knew it was time to step back and evaluate the needs of our daughter and the wants of her parents -- we are living happily today with our decision but respect those who choose to continue with later surguries.

Good luck,
Kim

hello I too suffered an injury to my r/bp
I went to see dr.grossman in miami and was very pleased with the team in miami i was at the hospital
with surgery the following when i was told my platles
were to low for surgery well needless to say it was an emotional rollercoaster for me for which i am still riding as this was about two weeks ago I have
accecpted that surgery will not be possible due to health reasons,i have improved some since my accident
and applaud all that choose whatever route that life lays down infront of us my friends i read at therapy
go thru go around go under but don't give up good luck ron

Kim,

Thanks for sharing! We too have taken a similar route as you. For us, we have come to realize that true quality of life is much more than the current status of my child's arm. There is a child and a little soul in there as well, and for some of us, I feel it is perfectly fine to find what balance is best for our child's whole being. I feel very good about not following all the surgical advice. If we did, the first few years of my child's life would have been surgery after surgery, recovery, post-surgery therapy, etc. I think it is just something that we need to truly evaluate and look at from our own perspective and from our child's as well. There are no right or wrong answers here. We just need to search for what we feel is best for our child, no matter what that may be.

Up to the top for new posters.

Back to top for Mack's mom.

up to the top for new posters. If you haven't read this thread, please do, it is inspirational

Well, 12-1/2 years ago when my daughter Brittney was born, my main fear was if she would be able to function in the world and would her life be a good one and normal one – would her friends understand… would she fit in. I remember once when I took her to therapy and the therapist asked me what my goals for her were and I said, “ to be able to clap her hands like the rest of her friends” which sounds so silly now but at that time I wanted that so much for her. I also hoped that she would be able to give me a two armed hug and tie her shoes someday. She has done so much more and every year I get less scared if that makes sense.

I’m not sure how to describe my kid because she is the one who is strong and keeps me laughing. Although her injury at times can be difficult for her, she does fine. She does not get special help thru the school, or special treatment because she is too strong and determined. Some people might disagree that I should request special help – but try telling my daughter that one! She has not had any surgeries because we didn’t realize until she was almost 9 that surgery might possibly help her and by that time my husband and I had spent 9 years telling her that she was perfect just how she was – which of course we believe. At age almost 9 the doctor told us that if we left her arm the way it was that she would not be a ‘happy teenager’… he was more direct using the word ‘ suicidal’ but I know my child and she is a very happy kid…. Looking back I get angry – at the doctor who implied that my child would be unhappy if we didn’t ‘fix’ her… He does not have a BPI, and how dare him tell me that my child would be so unhappy with herself when her teenage years came and that we should make her ‘look’ better for others …. Well doc – she is in the top 5% (yep – averages almost 100 in all of her GT classes!!) is on the swim team, plays competitive soccer (starting line up) and loves,it, made honors band on a clarinet that the band instructor called to tell me that she didn’t feel that my child could keep up because of her injury but she went from 14th chair up to 1st chair and then on to Honors band and is amazing, she has a boyfriend that is so sweet to her and she has more friends than I can even count, and is living an awesome life. She’s taking a cooking class, 7th grade PE with many friends, and this year has a top locker in Middle school instead of a bottom one – she was excited about that, and is very popular. In the ranking of what is important to her right now in her life – lifting her arm and suppinating are not up there! Mall clothes and sparkly stuff – they rank way up there. I think that a scar would freak her out! (Please know that it is her age and our experiences) I am very glad that we have made the choices we have made and I feel that teaching our daughter that she was perfect as she was/ without surgeries has helped her believe that she is just fine as she is and is loved as she is. If her injury would have been more sever I might consider more though but she did regain movement. I think that she knows she can tackle anything now, and of course if she were to ever want to try for more function we would. I do think though that if you tell a child that they ‘need’ to have more to be happy that they will believe that ,and my child has always just accepted that her one arm is not quite as strong as the other. I can’t help but wonder if it were me and I had something different about me and how I would feel if my parents constantly wanted to ‘improve’ me. So, I guess that is why surgery has not happened in our family, - no pain – plenty of happiness and laughing – no scars – life just goes on and we live the life we were meant to live.
Christy