United Brachial Plexus Network, Inc.

I posted this story for a guy on another thread who was recently injured (on my birthday, actually), but it fits here, and thought I'd share my story as a 15 yr veteran. I read these stories on this thread and just kept nodding my head...

I'm looking for others who have traumatic injuries, who can give advice on defeating the pain, and hopefully I can help some people based on my longer term experience dealing with the injury.

I had an extremely bad car accident in 1991 when I was 18 (I'm now 33), c5, c6, t1 avulsion on the left side. I spent six months with crappy doctors in FL who wanted to amputate, and then after saying no, wanted to fuse my elbow. Obviolusly, 15 years ago a lot of people didn't know exactly what to do.

I saw neurologists and a plastic surgeon named Dr David Chiu at NY Presbyterian in NYC starting in July '92 until '99. Had two nerve grafts which back then were still considered experimental, the first took, I now have total use of bicep, and some delt/ pec action, but not much.

It took about 9 mos to a year to catch, and I remember the first bicep flickers came when I would sneeze. It's a great feeling after not having it for so long... The second was in 1996 to the radial nerve for wrist action. it never took. I basically have no use of my hand, but my bicep is really strong and I use it all of the time.

Sounds like other folks on here will be better equipped to help you deal with the medical side of the injury. A lot has changed since 1991, and while I'm very happy with the improvements I saw, you will certainly have more effective treatment today.

From a life-altering point of view, I might have some perspective. Your life will change, but you are still in control of it. I went from an invincible 18 year old to a total flail arm in a split second. That has huge impact on your confidence and psyche.

My advice as an "old timer" (as it were) is to keep your relationships with your friends and family alive. They are the most critical component of your psychological recovery. Talk, visit, have a beer (but not for a yr after your surgery ), and they will treat you like you treat yourself. If you act like an invalid and feel sorry for yourself, they will feel sorry for you too. That's not what you want, because that doesn't build a strong relationship. If you act like yourself, and acknowledge that you had an accident--but don't dwell on it--they will treat you with respect, as an equal, and with some admiration.

You can't hide what happened, so best that you own it, and don't let it own you. Those people are what will ensure that you get through this and return to life as you knew it.

Another thing, do as many of the things you used to as soon as you're able. You can still go to the gym. You can even go to a trainer that can help you out. I played soccer for a while and just had to tie it down with an elastic contraption. I still play tennis and can serve one handed. I play golf better than I did with 2 hands (which isn't saying much). I tie my own tie and my own shoes. I guess what I'm saying is that necessity is truly the mother of invention. If you really want to (or have to) do something, you'll figure out a way to do it. One time I had a blowout on the interstate, by myself. I had to figure out how to change the tire with one hand. Not fun, but now I know I can do it.

It will take time to master the little things, but you will. The bike though, hmmm not so sure about that one.

Anyway, what happened to you sucks. It's really unfortunate, and I honestly hope you regain full use of your entire arm. But keep in mind, it's not the end of the world. You're still the same person that you were before the accident.

Today, I realize that while that accident changed many things for the worse, it made me a much stronger person and a better friend and family member. Feeling lucky to be alive provides an interesting perspective and impacts the way you manage your own life. Since my car accident, I've gotten my degree, a masters degree, worked for the CDC, and one of the best healthcare companies in the US. I have a lot of responsibility, and I deliver. No one has ever asked me "if I'm able to do this or that" or anything like that. If I need to get something done, I'll get it done.

I live a great life. I still can pick up anyone in a bar, or talk to anyone at a party. I have a sex life (which I was really worried about initially). I have great friends, supportive family, and a whole lot of fun.

I live in Washington DC, which isn't far from Philly. If you ever want to chat, I'm happy to, by phone or in person. I also wrote about my pain experience on the once called "pain," but i haven't solved that problem yet.

Take care and keep your chin up. Your procedures will be effective, and i know it sounds really cheesy, but you have to rely on the power of positive thinking.

Take care bud.
Mack

RT Did you post a few months back possibly under a different ID? If not, please accept my apologies but your original post on this thread does seem very familiar.

As for the question, "is there a ray of hope" well, that depends entirely on what your, or far more importantly, your injured boyfriends' expectations for the future.

If "a ray of hope" means getting back 100% function in the affected arm, getting it back to how things were before the accident using various surgeries, then no, in his case from what you have described, this is highly unlikely.

If "a ray of hope" means can he get further surgery if he makes the decision to go ahead for himself and not feel pressurised by others, then yes there is possibly further surgery out there that could result in small regains in function. The technology and skills are there as we read practically every week, but the techniques are and always will be very difficult, and not always successful.

Each injury is vastly different from another, even tho they may seem the same, and this should be kept in mind ALWAYS when considering surgery, and reading about other success stories.

Your boyfriend sounds like he has reached a stage in his life with this injury where he is reasonably comfortable with the way things are, and has moved on, getting on with life, working etc etc and, although I do appreciate the fact that you want to help all you can, believe me, you probably aren't by not listenig to him.

These two quotes from your original post tell me that he has made a decision, and you should be happy with that, and respect his wishes..



One other quote from your post worries me and it's this one

I am not sure what is motivating you here. Are you worried about asking too much of your boyfriend perhaps? If so, then leave the decisions about his injry to him and support him in those decisions. They are his and only his to make, not yours.

Liz

2 me at least it seems that if u want his arm to work, for his sake, let it go, just let it go. however, if u want it to work for u, ask him straight and tell him y, i hope the relationship is strong in that case. dont mean to be rude, just direct.

Hi to all those who have provided me with your precious advise. I have started looking at things positively. .And No I haven't posted anything previously to this forum.The relationship still holds strong and I hope that things might start looking better soon. Thanks a lot for your help and prayer.

Hi, RT, and Hi again to the many of you who have encouraged me. You have given me so much, and now I am happy to be able to reach out and possibly help RT.

My heart truly goes out to you and your fiance...it sounds like you two are past the "friend" stage...but perhaps I can help explain your parents a little. I do know where they are coming from. You are their darling child, they have protected you, sacrificed for you, taught you, loved you and dreamed for you. I am sure, like all good parents, they dreamed big dreams, and that did not include you promising to spend the rest of your life with a man they consider damaged.

Because you clearly would like their approval, they are important to you and you must love them very much. You do not have to make an "either or" choice here.

Your parents need clear information from specialists, not just non-specific gloom and doom mutterings. They also need you to speak up with calm determination that you understand their fears for your future, and you love them for it, but you are a grown woman now, and you love this man, who meets all of your needs.

Point out that their fears are unfounded, because strong character and a good heart and soul are what you want in a husband, not necessarily a body with all its parts in perfect working order. Somewhere inside, your parents know this.

We all know situations where the perfect couple, who seem to have everything going for them, suddenly split up, and everyone is shocked. It happens very often when two people have been so busy checking out their chemistry that they have neglected to check out their values, their goals, and their ethics. If you can show your parents that you two have indeed checked these things out, and that you are very much in love, they will get it. Not in a second, but they will get it. All your parents want is for you to be happy. That's what all good parents want for their precious children, and what you will want someday for yours.

And if you are the first child to want to marry, or an only child, which is even worse, your parents' desire to protect you from making what they see as a serious mistake is even more understandable. It would be helpful if you have an aunt or someone from their own generation on your side. Just go slow, and don't give up on them; more than anything else, they don't want to lose you.

Now, I can't advise you about your fiance's medical situation nearly as well as all the others who have responded to you, but I do strongly agree with them all about the main thing they have all stressed: It is his body, and his problem to solve in his own way and in his own good time. Your job is to support his decisions. You have to keep yourself aware and up to date on what is going on, of course.

It would probably help your case with your parents if they see that you are knowledgeable about his injury and its prognosis and in what ways you realize how it may affect your lives, etc. They may be surprised to find out that you are not a naive, fragile little critter at all, but a mature young woman who has chosen the right path for herself. They may not be thrilled....you'll have to wait for the first grandchild to see that...but they will be more accepting.

I wish you the very best of luck,
Barbara-

Beautifully stated Barbara.
Sue

Thanks, Sue. I hope it smoothes RT's path a little.

The only thing worse than going through physical trauma yourself is having to go through it with one of your children.

I've been moving around the boards here, and I would just like to say how sorry I am that you have had to endure so much with your son Dustin. When one of your kids hurts, you hurt in places you didn't know existed before.

I see it will soon be a year since his accident. It seems that he has come a long way since then, with you searching out every possible lead for him, yet still finding the time and compassion to advise and comfort so many others. You are one terrific lady, and Dustin is much more fortunate than he may realize at this time.

I guess you are a little disappointed that he doesn't want to have any more surgery right now, but you seem to have come to terms with his decision. But how about your feelings about his three (3!) female roommates? Or is that already in the past? Your son does seem to have his own brand of luck.

It saddens me to realize how young almost everyone was at the time of his or her injury. It is so unfair, that at the very beginning of their lives, these kids have had to suffer such devastating blows. It certainly brings me up short whenever I start feeling sorry for myself.

Take care of both of you,
Barbara-

AWWW, Thank you Barbara. You are so special too. You brought goose bumps to me as I read your post. Yes we are lucky Dustin has made a great recovery in a short time. I get so much support here, it really does help to know we are not alone in this. Thanks for your wonderful words. I check in often hoping for a miracle, lol. I try to find things we haven't done yet. Any way to get that arm going.
Sue

Hi..I had found this site last year around my birthday. I got so much of strength from your advise and support that I can never thank you enough. I am still trying to convince my parents.I as most Indian girls do would have loved to get their consent. However we do hope to get married this year.I left India for my work 4 months back and now I am in UK,Sheffield. I will be here till March.The distance just strengthens the bond daily.Karen,Sue,Rich,Mack,Jack,Amy and most of all Barbara I am really grateful to you for changing my way of thinking.I always thought he would not be open to discuss the issue but we have discussed it and I have also seen his BPI arm. It looks frail and has bad scars but it doesn't matter as long as the heart is pure.
Sue,I have been following Dustin's recovery and I am so happy he is doing well.
Above all please keep us in your prayers too as my family is going through rough times and I am going through some really lonely times.

Hi Everybody..

To all those who have been there to advise me..I have a piece of good news.

We are getting married on the 24th May with mutual consent from our families.Thank you for all your help to make me understand things which were quite incomprehensible.

Please keep us in your prayers....and thank you once again