United Brachial Plexus Network, Inc.

Hi all
Me again asking for help. Sean's arm is wasting badly and as you all know at this point in time he has lost focus. He tells me that the physio in the hospital told him it wouldn't make a difference to work the arm. Is this true in other's experience? I feel as though I am always looking for answers, but I can't give up and I won't give up on him. However, I do need some help in motivating him to take action to keep the arm in good condition so that when the technology to fix it is available he will be able to take advantage of it. Does anyone have any data regarding the stem cell research and BPI? I know that it is possible to regenerate the nerves and have them reattach to where they are supposed to. Can anyone out there help me? Thanks again for all the wonderful support. You have all helped me and my family get through thisso far.
Love and prayers
Moira

at first my arm was completly flail. i was really bummed. after watching my arm atrophy i used my left hand to move my bpi arm. constantly moving my fingers and making a fist. bending my bpi fingers all the time. no matter what they say ,never give up! your musles must be flexible for tendon transfers. everyone here has a time of mourning, but never give up. KEN

Hi again Moira. I'm sorry to hear that Sean is still feeling low. It can take a long time to come to terms with what has happened. I was 21 when I got my bpi, and like Sean's, it was (is!) a severe one. I remember Sean is in his early 20's, it is a tough time to suddenly accept a new direction. I think you posted that Sean was planning to go to Uni to study, has he started yet? I think getting a new focus away from the arm would be a wonderful thing for him.

Here are my feelings about this, I understand that not everyone feels as I do, we all had different experiences, plus, I'm the injured person, not a parent feeling pain on behalf of my child. I understand how he is feeling about the PT, I remember reaching that stage. It seemed to me that doing these passive excercises on my flail arm was just a bad joke. I also remember that when the time came for me to accept that my arm was not going to recover any further, the relief of not attending physio was huge, it enabled me to stop feeling 'disabled' and recommence my life, changed, but still me, a whole person. I did keep my joints moving, mainly by living a very active life and expecting my arm to come along too, it seems to help the arm feel more comfortable, and helps me with the various sports and activities that I do now. I also remember it was very hard for my family to accept that I wasn't going to 'official' physio any more, they took longer to accept the extent of the damage from the bpi than I did. The muscle wastage too seems to affect others more than it does me. I'm used to it.
Perhaps it would help if you spoke to the physio yourself, and to Sean about what he hopes and expects from now on for himself as a person as well as the prognosis for his bpi.

Stem cell research as I understand it may one day enable Drs to stimulate the regrowth of nerves from the spine and if it works, will be a huge breakthrough for bpi injuries and many others. I personally was not prepared to wait for medicine to catch up with me, I felt strongly I had to 'move on'. When I got my injury, reimplantation of avulsed nerves was being tried in Europe. My consultant told me about it, but also warned me I was young and that I could effectively spend my whole life looking for surgical answers. It took me a long time to work out what I wanted for myself, I was very afraid of what life would hold for me without my right arm. Miracles do happen, my miracle was that somehow I got through what Sean is going through, and despite having no functional use at all of my right arm I consider myself completely recovered from my bpi. This may be hard for you to understand, but I have spoken to many long term bpi injured people who feel the same way, irrespective of the amount of recovery their arm had. It must be very hard for you to see your son in so much pain, your posts make me feel very keenly the things I felt so many years ago, and help me understand my how my parents were feeling at that time too. I am a parent myself now and frankly would rather experience a bpi myself than see it happen to any of my children. Nowadays, my parents too feel that I did get my miracle.
Sorry to have been so long winded, it is hard to put these powerful feelings into words that will convey my message without causing offence. I sincerely hope I haven't caused offence. I would never advocate anyone to go against any therapy that might help them, now or in the future, and if I remember rightly, Sean's injury is not all that old yet, he may yet gain some recovery. I guess I am just saying that I truly understand Sean's feelings about this, I've been there, and come out the other side. Your concern about him is wonderful, he needs all your support right now. I hope things look better for you all very soon. Take care and best wishes to Sean. Jen NZ

Hi Moira! We would like to express our deepest sympathies to you and Sean. Jason is 25 and is dealing with roughly the same thing. We were in a motorcycle accident 6 months ago and Jason suffered a tbpi with avulsion of 5 nerves. Jason is in therapy now to keep the shoulder and arm supple for further surgeries that may help regain some use of his arm. We think that therapy on the arm to keep the joint functioning is important. Sean really needs to know that this isn't the end of the world, things will get better, it just takes time. There are a lot of people out there with similar injuries. Sean needs to know that he is not alone and it helps a lot when you communicate with them. Sometimes the best information is from the people who have experienced this injury rather than from a doctor who doesn't specialize in it. Let Sean know that everyone here is pulling for him and can really help him.

What caused his injury, how long ago was it, and how severe is it? It will help us to understand how we can help. Also, where are you located? We are in AZ. The sooner Sean see a specialist the better. Timing is everything. We saw Dr. Nath on Friday and attended the seminar on Saturday and know now the route we must take. I urge you to contact Dr. Nath(if your not already seeing a specialist). He will be able to tell you if there is anything that can be done. There is a time limit for nerve transfers. Dr. Nath is based out of Texas Childrens Hosp. His number is 832-824-3193 and email is rnath@bcm.tmc.edu. If Sean would like to talk to someone, I think Jason could really relate and help him mentally deal with what he is going through and I think it would help Jason as well. Just drop us an email and we will exchange phone numbers.
Good luck and hang in there. Things will get better.

Jason and Amy

Hello Moira.....sorry to hear that Sean is feeling down. Unfortuanately that kind of goes with the territory with this injury ( And I still have my days also. Important for Sean to break out of the cycle though, cause it can drag you down and not let you up if you're not careful. Perhaps Sean can re-focus on other things that interest him. Easy to say, harder to do....yes. But it's do-able. His injury occured in a split second, but the truth of the matter is that it will take time for him to come to grips with what has happened, and then be able to sort through his emotions and deal with them. I can remember being in bed a short time after my accident and EVERYTHING was crowding in at one time. It was almost more than I could handle. But, with time, each little problem that came up was carefully thought through, (taking lots of deep breaths) and worked through. It wasn't easy.....but it was neccessary. And I can't stress enough the value of being able to simply talk with others who "know". This is a healing in itself. It made me realize that I'm not alone in this......and that it's ok to even make light of my predicament.....and that there's life beyond my arm. Well....didn't mean to write a book. Feel free to e-mail if you'd like.

About the wasting........I am a little over two years post accident, and my arm and hand is noticeably smaller....and I am (to a certain degree) self conscious about it. Where I've had recovery, I have a bit of tone. But the muscles that havn't been innervated (forearm & top of hand) have wasted a good bit. I doubt that I'll get them back....(another one of those things we deal with). I am still attending therapy about every two months, and will probably stop in the next six months, unless of course something decides to start working again. I won't give up either, Moira. Now the fight is to keep what I've got, and continue to "mentally heal". (I think Jenny coined that phrase) Tell Sean we're here if he needs to talk. It would be good to hear from him ) Thanks for your post.

George

Hi Moira,

My son was 22 when he had his bp accident. He was in the hospital 11 days and we were just blown away in that short amount of time how fast the arm wasted away. The accident was in May and everyone who came to visit him brought gifts. Many people brought muscle shirts or tank tops of his favorite university Michigan State. I didn't understand at first because he loved these clothes but never put them on. Finally I realized he didn't want everybody else to see how small his arm had gotten. The accident is 9 years old now and he still pretty much keeps the arm covered. He went to physical therapy forever and I must have done range of motion exercises on it for years. I eventually hurt my rotator cuff doing exercises on this arm that was totally flail. He has had 2 surgeries, but as 3 of his nerves were totally avulsed and 2 of them stretched very badly we really haven't seen any improvement in the arm whatsoever. He sees Dr. Kline in New Orleans and just had another surgery in June. Dr. Kline is hoping for him to get some elbow use. He did go back to college and got a new line of work using computers and has managed to go on with life. Even though he is now 31 I didn't want him to have another major surgery all alone so we went with him to New Orleans in June. I had had hope for years there was going to be something new. I followed stem cell research, I listened to everything Christopher Reeves talked about, whatever just trying to figure a way that the nerves could be put back into the spine. I asked Dr. Kline flat out will there ever be anything that will help him and he said NO! He said whatever this latest surgery gives him will be all there will ever be. Knowing was better than having spent 8 years hoping. I must say he has figured out how to do most things with one arm. I could live happily ever after and I am sure he could to if only they could find a cure for his pain.

.....here's something I cut and pasted from another board re pain relief, it's in South Africa but may offer some hope, maybe someone else is doing this kind of stuff elsewhere in the world.

"For seven years Adrian Brenner was in such excruciating pain he planned to take the extreme measure of cutting the nerve causing the trouble. Luckily, such drastic steps were not necessary. In January Brenner became the first person in Africa to be given an electrical implant that kills his pain by bombarding the nerve with false signals, making it unable to relay the messages of pain. All Brenner can feel now is the tingling of the electric current that runs from his chest to his upper arm. Speaking at the Christiaan Barnard Memorial Hospital, where the operation took place, Brenner described the unbearable agony he had suffered in two fingers after five operations had damaged the ulnar nerve running from the neck to the hand. Morphine and other painkillers would not work. The answer came from a medical article about a US device called a peripheral nerve stimulator. It is powered by a mini-generator which, in Brenner's case, has been implanted in his chest. It sends electrical signals along a wire inside his arm to a series of electrodes attached to part of the ulnar nerve which is still healthy, in his upper arm. The generator fires signals along what doctors call "fast" nerve fibres, making it impossible for the "slow" fibres to carry their messages of intense pain to the brain. Plastic surgeon Stuart Meintjes and Martin Rall, the anaesthetist who runs the pain clinic at CBMH, inserted the device, which cost around R60 000.00 (approx 5000 pounds - MadBoy). Brenner's medical aid is paying for the procedure. The device is used only in cases where conventional nerve medication and other, less expensive surgery, does not help, Raff said. He eventually expects to perform around four such implants annually." - Jo-Anne Smetherham for Cape Times, 12 March 2002

I totally agree that it's better to have a surgeon be realistic about recovery than offer false hope, it was one of the things discussed at the bpi symposium in Paris as being of concern to some surgeons. I hope your son gets some relief soon :0) Jen NZ