United Brachial Plexus Network, Inc.

My sons accident happened 9/04 since then he's been depressed and has given up. He's lost all use of his dominating arm. He had the nerve graft surgery here in NY but he's only giving it a 50% chance of working. I really would like to see him go to the Mayo Clinic, if we're going to do this he has to do it soon before his health insurance runs out. He's in extreme pain and his one wish is to be able to sleep through the night. Before the accident he was a very active man. He worked, golfed, snowboard and raced snowmobiles having to move back home and nothing to do is just killing him. He doesn't go to his pain dr or physical therapy anymore. I'm very worried about him. Should I let him work through it or should I be getting after him about physical therapy and the Mayo Clinic. Please help this very concerned mom, I want to help him but not turn into the nag of the year!

Joyce,
Your son's injury is still in its infancy. It will take time for the recovery process. He will need to give that recovery the best shot possible. That's easy for me to say, and I'm sure you already know this. I recently read a book called "The Pain Cure". It talks about the science of pain. It covers the importance of nutrition and exercise in the battle against pain and depression. Now, about the nagging part. Unfortunately that's your job. We all need a swift kick in the but sometimes. He has to believe that he can still have an active life even without the full use of his arm. I think this is paramount. One of the great things about the Internet is the access to other people’s lives. People who excel despite their differences. If he knew that there was a group of one-armed snowboarders or golfers waiting for him to join in. And he could be good at it, maybe even the best. What would that do for his self-image? After all, that self image thing IS the battle, right? So nag on. And keep fighting the good fight...Karl...

Hi Joyce,

My dad had left bpi. Left hand is his dominating hand.

We have just tried to see a Chinese physician recently ie the past 3 to 4 weeks. I can see that after taking the Chinese medicine, my dad can sleep better at night and much lesser pain. Before taking the Chinese medicine, he used to take 1800mg of neurotine now he only take 300mg and is thinking of dropping it totally.

The physician told us that he basically is prescribing the herb to relax the nerve so that the pain will reduce as the pain is cause by all the pulling / cramping of nerve. True enough it work for my dad.

I don't know whether you are able to find a Chinese physician in your country. If yes, you have to talk to him and determine for yourself whether the physician know what is nerve pain and whether he know what he is doing or not, otherwise don't trust his prescription.

The above is based on my observation of my dad's condition.

Hope you find your answer soon.


Regards,
Hwee Yong

Hi Joyce,

My dad had left bpi. Left hand is his dominating hand.

We have just tried to see a Chinese physician recently ie the past 3 to 4 weeks. I can see that after taking the Chinese medicine, my dad can sleep better at night and much lesser pain. Before taking the Chinese medicine, he used to take 1800mg of neurotine now he only take 300mg and is thinking of dropping it totally.

The physician told us that he basically is prescribing the herb to relax the nerve so that the pain will reduce as the pain is cause by all the pulling / cramping of nerve. True enough it work for my dad.

I don't know whether you are able to find a Chinese physician in your country. If yes, you have to talk to him and determine for yourself whether the physician know what is nerve pain and whether he know what he is doing or not, otherwise don't trust his prescription.

The above is based on my observation of my dad's condition.

Hope you find your answer soon.


Regards,
Hwee Yong

As parents, we want to do what is best for our children and sometimes that includes being a nag. Don't let him sit and do nothing and dwell on what he cannot do anymore; help him see what is available to him (the pain clinic, etc) and like Karl said, all the things he can do one armed!
I'm sure pain is colouring how he feels about being able to do anything, but if he can get the pain under control (and he needs to take steps to do that) he can and will do so much more to enjoy his life.

Peggy

Hi Joyce,

My son now 27, was in a motorcycle accident 5 years ago. He also was very depressed and in the worst pain I have ever seen anyone in. After meeting others like himself through UBPN he realized he could go on and life could be great. No he can't do all the things he did before, but there is very little that he can't do. He has just learned to do them with one arm. At our last camp the joke was, Ryan can do anything but put his hair up in a ponytail. He fiance did that for him.

He works in computers and found a one handed keyboard, now he has 2 or 3 of them.

With camp coming up this Sept. I really hope you and your son will come. It is amazing how many TBPIs don't want to come and after 3 days, don't want to go home. We had this happen at both our past camps. Please nag your son to come. It will make a world of difference.

If you or your son would like to email me, please do so. karen@ubpn.org

My best to you and your family

Hugs, Karen

Hi Joyce,

I'm so sorry that you're both having to go through all this. I think seeing my son in such extreme pain was far worse than any other aspect of the injury.

What was done surgically in NY? Does he go back for followup visits & to assess progress? My son's surgery was done at Mayo two years ago, and until fairly recently he returned every three months for followup. That frequency seemed to help get him "back in the saddle" re discipline with his therapy. He also saw a PT one-two times a week, which also kept him going. Bottom line, is there any followup or ongoing local PT? Is he using an e-stim unit at home to keep the muscles viable until the nerves can grow out?

This type of injury is SO hard, because the surgeons can only do so much - and then the rest really is up to the patient. Not only that, it can take years of motion & strengthening exercises to get the best outcome. I'm not sure I'd have the discipline & patience to hang in there for the duration.

But - and this is important - I'm convinced a major key to reducing pain is getting some movement back in the arm. That at least is what happened with John, who had all five avulsed. He's gone from massive daily doses of pain meds that only partially helped, to being basically painfree now (he might take one Neurontin ~ once a week, usually if under stress). Perhaps if for no other reason than this, your son could become motivated to stick with the program & give it his best shot.

I agree with the other posters that there are a good many people via this website who are in your son's age range, who have come through this, are physically active, and can be good encouragement. Another thing that helped John was becoming more active with his friends and just staying busy in general.

I feel like I'm rambling more than usual - I get carried away sometimes - so now I'll shut up. Take care & please keep us posted.

Ellen

Joyce,
I am sorry to hear that your son is going through this but I do COMPLETLY understand, I went throught the same crap myself! I was 21 when I had my accident, almost 25 now. I was uterly depressed and hated my 'new' arm and life!! It took me almost 2 years to get past this but now, other than reading the boards, I dont really think aobut it much, unless it hurts and I want to cut it off! haha

My pain has calmed down a ton since two surgeries. But when it hurts, IT HURTS! I take a pill here and there but thats it anymoore, I jsut try and deal. Therapy actually helped a ton, water therapy was GREAT!!!!

I agree with Ellen, the follow up visits with the surgeon helped to keep me in line, I wanted him to see progress every 4 months that I saw him so I worked hard.

I have not worked since my accident. Could I Do that over I would have tried to do SOMETHING sooner, Now I am SCARED TO DEATH to get a job, and i need one now! I did however go back to school and finish my degree. I am graduating in May with honors in Business Administration! I want to get into hotel management and this is deffo something that I can do with limited used of my injured arm. (I do have hand function and some other small stuff, nothing really usefull yet though)

Does your son read the boards here or even the UK boards at http://pub28.ezboard.com/badultswithbra ... usinjuries Their website is http://www.tbpiukgroup.homestead.com/index_1.html and there is tons of info there too! As you will find here, there are very successful people who have BPI!

Come to camp as Karen suggested! One of the greatest things for me was to talk with other injured peeps. I even went to the UK this past summer nad met with them, great people! We really do have a great ime. I was one of the people who DID NOT want to go to camp, once I got there I wanted to leave, when Monday came, I didnt want to go home!

If you want to talk anymore feel free to email me or even to have your son do so. I am ALWAYS willing to help where I can! I have free nights and weekends on my cell too!

COurt xx

Hi, i remember bouts of bad depression myself.. it takes time to work through and sometimes seeing a good Dr can help a lot with that, it did for me. Courtney is right, on the UK board she linked if you go to 'community' there are pics of people with TBPI doing things like horse riding, skateboarding etc. It could spark something for your son? There is also a site for one armed baseball players, i think it is www.onearmedbandits.com if i remember right. If your son has stopped PT, is he doing the stretching excercises at home? It is very important to keep the joints supple by passive stretching, they can seize up quite badly, especially fingers. Hope this helps a bit and he gets through this, good luck!

Joyce,

I'm sorry your son is going through all of this. My son is exactly the same. He is two and a half years post accident. He is on the duragesic patch, Vicadin and Neurontin. I just got him the SAM bed, this is a bed that has no pressure points, his winged scapular is helped by this bed along with the figure 8 brace. He is also depressed and see's a psychiatrist every other week. He scares me sometime when his depression gets bad and he says he wants to end it all. As mothers it is so hard to watch your child in pain and unable to help. My son is 20 years old, is unable to work because of the pain. I, like you, don't know what to do for him. He shuts me out when I ask too many questions, usually I can get one or two questions in before I reach his limit. He has had nerve graft surgery and now I would like to take him to Texas to see if his winged scapular can be helped. I would love for him to go to camp but he flatly refuses. Last year the camp was only one hour from my home and he still would not go. He will not get on these boards to speak with others. He said that would make him more upset. I try to convince him that talking to people in the same situation could help him. I do know that the head injury he also received in the accident has caused some problems that may compound his depression, I don't know if there is anything that can be done about that.

Best regards,
Maureen aka Gianni's mom