United Brachial Plexus Network, Inc.

For the past few months I have been doing extensive research on the net for Brachial Plexus Injuries(Traumatic). Incidentally this enquiry is not for myself but for a friend whom I love deeply. We have decided to marry but somehow his injury stands in the way of gaining consent.
He met with a motorcycle accident three years back(September 2003). He has recovered a lot both emotionally and physically. He is doing excellent work in an Multi National Company.
Although I haven't gone through his reports I can tell you whatever information I have with me. He suffered from a brachial plexus avulsion in which all the five nerves were torn off. He underwent surgery under Dr. Anil Bhatia and I think the thoracic nerve was diverted to his right arm(the affected arm). He can fold his elbow for a minute if he takes a deep breath. But because he has given up hope of regaining any further movement he does not even want to discuss any future surgeries. The blood circulation to his arm is perfectly all right. The tips of the fingers are slightly bent always. He complains of a pain very occasionally and caries out his responsibilities to perfection. But because he feels that the left arm is sufficient he does not intend to give any other options a chance.
But looking at the different posts in UBPN I believe strongly that there is a chance of restoring basic functionalities like perhaps hold the arm against gravity.
I do not know if I am asking for too much but as long as there is even a single ray of hope I want to try.
I also do not know whether the above information is sufficient to elicit a response from you.
Please help !!

There is always a ray of hope if you allow one to be there. When we lose hope, we hit the point of which we think all is lost, then something new comes along and the ray of hope returns. I know my injury is really not very similar to your friends. I was injured at birth so I have never experienced the fully functional use of both arm. I cant imagine having use then losing it.
From what you have described kinda sounds like you two need to have a very deep conversation. This injury if you choose to ignore it will not go away. It could even cause more problems in the future. This can be a lot of stress on both of you (you mentioned you plan to marry). Your friends needs to know that you will love him and be there for him even if some day he cant work any more. I hope that other tbpi people will chime in here, but I think he is afraid of disappointing you. And Tbpi's like obpi do NOT like to admit we cant do something. It kills! But there come a point in our lives that we are not super heroes. WE are human.
Talk to him and love him like there is no tomarrow and maybe offer this website so he had the option to read and communicate with others who are going through the same thing. Talking to other people about it does not make you any less of a being and it can be extremely helpful!
Also ofer the point that he does not have to look into tratment options if he does not want to, no one will force him. But be there to support him when and if he chooses to look into treatment, its a lot to think about.

Good luck! I hope that you are able to work every thing out and marry this man you love!

Amy 19 years old ROBPI from MN

It sounds like your friend is cut from the same cloth as me. I avulsed my brachial plexus and have no movement in my left arm. What I realized is that I have 2 good working legs, right arm and a good head on my shoulders. You can drive yourself crazy focusing on getting that one arm working. What is important to me is to move on in life despite my handicap, have a career and be independent and self-sufficient. That is my ray of hope. As strange as it may sound, sometimes you just got to move on, always hoping for the best but planning for the worse.

-Rich

Hi,

I am the mother of a son (29) who 6 1/2 yrs ago was also in a motorcycle accident. He also only has use of his right arm, hand. After one surgery, getting off all meds, except tylenal, he put his life back together, continued working, he uses a one handed keyboard, found a girl, unfortunally they were engaged for 3 years and it just didn't work out, he continues to do everything he wants to, encluding deep sea driving, the running joke at the last few camps, Ryan can do anything he wants except put his hair in a ponytail. So far, he has also opt not to have anymore surgeries and seems to be doing just fine.

After what I have seen Ryan and other TBPI's do with limitation of using two hands, I will always say there is a big ray of hope.

Wishing your boyfriend all the very best.

If you have any more questions email me at karen@ubpn.org

Hugs to you both,

Karen

I think there is always hope. My son did not avulse any nerves but the arm is still limp. He cannot even bend the elbow. Just movement while laying on his side. He is going back to Mayo, for tests, where he had his first surgery. He said he does not want any more surgery. I need to respect that. I know if it were me I would do it if they thought it would help. But, I am not the one with the injury. He wants to move forward and not have the arm the focus of his life. He still does therapy and will continue. The muscles are getting stronger. So, until he decides that he is ready to try something other than therapy I think I need to let him make that decision. His car was hit by 2 semi trucks and we are lucky he is here. Due to his other injuries there are many things he cannot do that he could prior to the accident. But he has come a long way. We are thankful for what he can do. We expect to see improvement in all areas yet to come. And if the arm is always limp that is fine he can walk and talk again and has returned to college. He will lead a full life and has had no shortage of girlfriends post accident.
So........yes there is always hope, just give him time and space.........this is a long healing process for all.
Sue

Thank you everyone for your advise and support. Sometimes it seems so difficult for me to understand why the entire world can't see him as I see him. The capable one. My parents are deeply troubled and don't want me to go forward. They have been told by some doctors that even though things might look good there will be devastating long-term effects. What effects-- none of them care to explain. Can anyone show me a way to convince them?

RT,

I am with Rich on this one, as far as the attitude about moving forward. I did the same, avulsed all five and had a surgery that allows me to bend my elbow with the breathing nerves. By the way, I can now bend it with out breathing and can have it bent for as long as needed. As far as having hope, I took the attitude that I would spend my time focusing on living and let others worry about hope of surgical break through's, 20 years later and they are still looking, I am still living:)

As far as the world looking at me the way I see me or my wife and family see me, they do because I don't treat my arm as anything to focus on, so they don't either. Your parents might focus on it, but that is their hang up, not your fiances.

To your last post, your parents being concerned, I don't have a clue what they are talking about or what some Dr said. The only thing I could see as a worst case, he gets tired of having his arm and gets it amputated, doesn't impact his life. If I had to amputate my arm, it wouldn't change my life at all, except I might have to get my suits re-tailored, I am a business man and my suits need to look good. In fact it would help me do the sports I like even better, water skiing, snow skiing, golfing and numerous others, because I wouldn't have to wrap it up. Might be a bit harsh for some, but I don't see any other long-term effects I might have to deal with. Like I said,I am 20 years in, so you might say I am dealing with mid-term effects and for me there have been none. Yes, I deal with pain, but been fairly constant since the start and learned fairly quickly how to deal with it without drugs and does not negativly impact my life.

As far as showing them something to convince them, I would find out specifically what they are afraid of and then you could address something specific, not some unknown "devastating long-term effects" I would also hope they are more concerned about his morals, ethics, treatment of their daughter and the many other things that are truely important in a marriage, rather than if one, two or no arms are working.

If somehow they are concerned about him being able to support a family financially or partner in raising children, again, Rich said it well, last I checked in business all you need is a good head on your shoulders. And read around a bit, there are many who raise kids just fine, my wife thinks I do ok with ours.

To wrap up, based on your first post, your guy seems like he is doing great and I wouldn't worry about him. Tell him to keep charging forward, enjoy life and hope you get to enjoy it with him.

Dan

G'Day RT,

Where to start? I'm 31, Aussie Boy and had my accident November 16 2003. LTBPI- Left Arm Dominant(Obviously Now RIGHT hand dominant lol)

A car T-Boned me doing 60mph, I broke left shin, hole in right thigh from knee to groin, severely sprained both ankles, ground section from outside of right knee, splits resulting in both halves of Pelvis being torn away completely from spine,put right hand through windscreen creating tendon damage and providing temporary home for a cup and a half of glass, severed left phrenic nerve resulting in left lung not functioning anymore, fractured left Radius and Ulna, Severed C5 and Completely Avulsed C6 C7 C8 and T1, also severe head trauma, and to me that's enough but to others here I'm only a beginner with not much comparatively.

My pain was always the worst part of this injury, and I was on Methadone, GabbaPentin/Neurontin, Mexilitene, Amytriptyeline, and a few other incidentals but the above were my main pain meds.

It's a huge journey of self, when you go through this. And sadly for all the friends and family there to support us, the only person who can cope/deal with this is the one going through it. It's not that the help isn't appreciated or wanted, it's just ultimately a personal thing that we need to eventually come to terms with ourselves.

A key thing I've noticed is for loved ones etc. to NOT push us, or pressure us. Definitely don't fuss over us. We need to accomplish new challenges ourselves with no hassle.

Your parents don't need convincing, they do need to talk to Dr's who know what they're talking about! There is a database on this site of Professionals in the TBPI field. Beyond that, stuff their consent, they are being narrow-minded by putting a very minor impairment in the way of their own daughters true love and happiness. You need to be very clear in your heart and soul about your feelings for this man,and if it is what's right for you both, then you both are the only people who need to make this step for yourselves!!! IT'S 2006 NOW!

I married after my accident, I was unhappy in my relationship and went into massive self doubt due to my physical injuries and new appearance (ie:scarrs etc.).I felt trapped in the marriage and seriously believed noone else would ever have me the way I am now!I gave up on ever finding real happiness and felt I should just shut up and get over myself and lie in the bed I made for myself!

I left and I've found a woman who is absolutely everything I could ever have dreamed of and more. Kym is absolutely stunning and we both know that our souls have found each other finally. Kym is constantly forgetting that I have a LTBPI purely because her love for me is unconditional and she clearly loves me for who I am and not my physical self. Marriage and Children for us is a given, not even up for discussion we just accept that's what lies in our path together.

I know from my own personal experience, and friends who have the same or similar injury and one in particular who has lost his leg, we all need to maintain our own identity and be who we are.

The last thing any of us want, is to be a burden or hindrance to anyone. We need to be self sufficient and maintain our own personal status without feeling like we owe anyone or vice versa!

We aren't ignorant, and we will find out if someone is with us purely out of duty because you can't fake love. If you can't cope or foresee yourself coping with the future, you need to tell him, it won't be easy but certainly for the better!

Otherwise, he clearly hasn't lost any earning potential, and you just need to respect his wishes about surgery and don't fuss over him. I want to get my arm amputated next year and Kym will be sad but tells me repeatedly it's my decision ultimately, it's my body and my arm!

Sorry if I'm too blunt!

Cheers And TC

Jamie, Kym and Jack(My LTBPI)

Thanks a lot of you who have shared your stories and strengthened my faith. This forum and the people in it have shown me that -Disability is always in the mind and never in the body.

Thank you all for sharing....for those of you who have learned to deal with your pain without medications, or those who are on medications that are helpful...please give details. My son is nearly a year out from the accident which avulsed C5-t1. He is in terrible pain and has tried a multitude of medications. He will be having an extensive pain evaluation in a month. The doctor wants to know what his goals are (realistically) and how we think she can help.

Also, Sam had nerve transplant surgery simular to what has been described. This is month 6. He seems to have sensation lower down toward his elbow. The other day he had an itching sensation at the lower biceps area. Can others who have had this surgery please describe their experiences in recovery of sensation and function? Thanks, Michele