United Brachial Plexus Network, Inc.

Hi- I am a lurker.My son has ROBPI and his injury is very sever. He has never had use or sensation in his right arm. He had primary with nerve grafts about 3 months ago. I am wondering if there are any adults here that have never had any use/ function of their injured arm? His arm just hangs.

THANK YOU!!! THAT IS WHAT I NEEDED TO HEAR. MY SON'S INJURY IS VERY SEVERE- 2 AVULSIONS + TEARS ON OTHER NERVES. HIS DOCS HAVE ALWAYS PREPARED ME FOR THE WORST. MOOST HAVE SAID THAT INJURIES THIS SEVERE ARE RARE. I DON'T KNOW- ANY NERVE INJURY IS SEVERE. BUT- I HAVE COME TO TERMS WITH IT AND WONDER EVERYDAY IF WE SHOULD BE LOOKING INTO DIFFERENT OPERATIONS OR JUST LET HIM ENJOY HIS CHILDHOOD, W/OUT A LOT OF RECOVERY AND WRAPS.

Big Javs mom,
I am 18 ROBPI. I don't know exactly how severe my injury is but to me I would consider it to be one of the more serious, however I never let it slow me down. I have very little feeling in the bottom half of my arm and hand, and no feeling in my pinky finger. Also I can not raise my hand above my head or reach behind. So it is not great but I make the best of it.
I am in drama, and I participate in every sport in phyed. But most of all I love softball! I have been playing since 3rd grade and I think that I am every bit as good as any other person on the team!

Your sons primary surgery should help him a lot and I am not speaking from experience because they did not do this surgery 18 years ago but I think it takes a while for stuff to return after primary.

Hope that helps you. Feel free to ask questions, I am open to all questions.
Amy

Lori and Amy
What great answers. I think it is hard for parents to see that we mature bpi injured have not let our injury hold us back from anything.

I guess you might consider mine serious but until I had evaluations after finding UBPN ... I thought I had a rare injury and of course mild compared to others... Even though I had never met anyone else. I never let it hold me back I think it made me more determined and creative. How about you guys? Don't you think sometimes you tried things just to see if you could? I think that is why I have so many hobbies. I tried things and found I liked most of them... except tennis & vollyball... oh I never tried golf because I can't swing the club with either hand.
Besides I have been forced to watch enough golf on tv and think I might be bored.... LOL...
I guess I am normal I had three children and now have 5 grandchildren.... OH and I will be married 40 years in Nov.
Kath

Bigjavs mom you need to take a deep breath and relax. your son is not even 1 yet and he has had a couple surgeries already ! Try some therapy for awhile and let him build his muscles back. It takes a little while for strength to return. Give the surgery a chance and a chance for the muscles to build up with some good therapy!!

Umm, I really don't appreciate that post. I know that this message board is for everyone to be ab;e to post exactly what they think, but I must be honest. That one bothered me a bit. I don't feel like I need to take a breath and relax. If my son's arm never works that will be fine with me and he is being raised as a strong individual and we treat him the same as our older son. The reason I was asking for comments from people with no use or recovery is because I don't believe I am going to put him through anymore operations. He will be fine- whether one or both arms work. I am not upset anymore- haven't been for a while. The only reason I even got the primary surgery and nerve grafts is because we were told that it needed to be done with in the first year of injury. If it wasn't for that time limit- I wouldn't have made that decision. I would rather it could've been something that he could choose to do or not to do later on in life. I do appreciate all posts in response to mine, and I harbor no hard feelings. I just wanted to let you know that I am not brooding, or sitting here staring at Javier's arm waiting for it to move. I have too much Faith in a Higher Power for that. If his arm is supposed to work, it will. If not- oh well. He's healthy and happy.

Here! Here! & 3 cheers for BIGJAVSMOM!!....AND for all moms!! Sorry I was out of touch for Mother's Day wishes to all.
Hugs,all~~Carolyn J

HI! I never have been on this site or any other in fact. I'm 19 and I'm just starting to find out what exact injury I had. All I know is that I had severe nerve damage and my arm is a couple inches shorter than the other one, I can lift it a little or open my hand or straiten it or do much with it. I saw the mothers post about her son and I just wanted to reply. Your son will have no problems being "normal" I grew up and I was the MVP on my varsity volleyball team, I played softball, threw discus and was in drama and now im in college becoming a music teacher. Sure I always had to find another way of doing things but I did what I had to do. At times growing up and even now I go through periods where I question everything. You know those Why me? questions and I get real sad but my boyfriend and family always reassure me that its ok. If I could give you advice it would be to be aware of your sons emotional state too buecause as youll notice he'll be very srtronged willed and he might to to make it seem like theres nothing wrong but all might want to do is talk. Good luck with everything

Well Guest- you sure hit the nail on the head... I am not worried for a minute about the physical. I can let Javier do anything he wants and raise him to be a strong and confident individual. But I was wondering about any types of depression or self hatred or anything like that. What matters to me most is my son's happiness. He couldn't be any more "normal",lol
His favorite meal is mac&cheese, green beans and chicken. lol Thank you all for your posts.

Marlyn
You made me laugh ... more "normal"... LOL...
I am normal but I am so strong willed...
I drove my poor Mom crazy... if I decided I wanted to do something I never let anyone or anything stop me...
She could not understand when I got older why I was so fiercely independent and strong willed.

I finally told her, it was all her fault! Bless her.
She could not have it both ways...
I had to be determined because I was never allowed to say "I can't", therefore,
I never think " I can't do something."
It is so hard for me to let anyone help me...
I always want to do everything for myself...
I guess that is normal, at least OBPI normal... LOL...
Hold on to your sense of humor you are in for a strong ride... we can be so stubborn!
But, hey if we were not stubborn we would never have accomplished anything.
Kath