United Brachial Plexus Network, Inc.

Hi
I just wanted to pick up on Aurelia's comment about the botox - I just thought I'd let you know that botox can be used and is frequently used for children with obpi - it can help a great deal with muscle contractures - the surgeon injects the botox into whichever muscle is contracted too much, which then allows parents to perform extensive physio on the weaker muscles in order to try and make them stronger and more able to counteract the stronger muscle. For many children it's a great alternative to surgery.
Sorry to butt in - I know it's not really relevent, but I thought you might be interested in it.
Personally I think the silicone implants for pecs and biceps etc is a great idea - I'm sure many people with a bpi would seriously consider this surgery if it was available.
Karen

Sorry, but shoulder pads are uncompfortable,unstable and sweaty. A prosthetic company called Hanger can create any prosthesis necessary (shoulder,leg,arm). They are not the most comfortable But we must make due & you will become used to it. I have a paralyzed right arm going on 8 yrs. (car accident.) Dave Verhoff of Hanger inc. in KC,MO was great. These simple things can increase esteem and help to get back to your old self. Hanger inc./ 1-816-363-6886 (KC,MO). They are located all over the country and you can probably find one near you. Hope this will help, Please let me know

Ian,
I think your idea is great, why not? People that are disfigured from burns try their best to correct what damage thats been done, why not for TBPI? I'm an extemely physical man that loves to use my body to dive into adventure and trouble at times, or at least was last year before my accident. And I'm at the stage of the waiting game, waiting for nerves to kick back in after surgery so I can get into physical therapy to see what kind of recovery I might get. I'm not to hopeful (as I'm not one to settle for anything but perfect), and it doesnt help as I watch my arm and shoulder wither away to nothing as I wait. My problem is that I drank too much milk and ate to much meat as a kid, so I've got quite a bit of muscle mass on the rest of my body, exept for this little twig of an arm I've got left. If recovery is not to good, I'm going to the chopping block and getting this limb chopped, stuffed, and mounted, right above the old fire place. But if the old bugger gives a good fight, I'd like some kind of balance given back to what used to be my pride and joy. Never met a man I couldn't beat arm wrestling with that old beater and I wouldn't mind giving it back a little bit of it's old glory (at least for looks). All fooling aside, in a year or so I was planning on going full ahead into finding a specialist to help out with a little bit of corrective cosmetic surgery. As I happen to live in Hollywood, the silicone capitol of the world! The only apprehension I have about it, is aging, with the possiblity of the body's natural physical decline. Anyway that's an issue that can be delt with in thirty years, as I'm thirtyfour presenlty. The one area I do truly care about is the shoulder, as you mentioned, mine is flat, sharply angled, and narrows done to a point like my kayak. And my scapula juts out so I now hate wearing T-shirts, not to mention my bone-twig of an arm which is still moslty covered by my sling (for now). Maybe I've lived in Hollywood to long, but for a single athletic guy who used to be called 'Arnold' or 'Hulk' jokingly by the guys, it's pretty hard having something that was a life long part of your identity replaced by something that unfortunately feels freakish at times. I might just not be used to it yet, as my accident happened nine months ago, but I'm not sure I want to get used to it. Anyway, Ian, I need something to get my self busy again as you can tell by the length of my response, so I will hit up some of my Hollywood contacts up, and start my hunt to find out the best chest implants in town and find out from there, who did them and see if there are any options out there or anyone willing to work with the idea of creating something that might be part of the future for people inflicted with this thing called BPI.

Cheers,
Christopher

Christopher,
Please keep us informed on your findings! I am sure that there are many people here that would be interested in what you learn! Thanks for leading the way!
Courtney

Christopher,
It was good to here from a fellow southern Californian. I know how the change in life style pulls you down. I got my tbpi riding my road bike doing hill work while training for the Amtrak century (Irvine to San Diego). Hit a car head on at 40 mph going down hill and coming around a right hand curve. Needless to say, I haven't been riding much since then. My road bike got totally destroyed anyway. Snapped the carbon fiber stem off the front fork. Bent the frame. The bike is only good for wall decoration now (perhaps a shrine?)Sorry, I'm rambling. What I wanted to ask was where did you have your surgery, and who perfomed it? I'm shopping for a bpi specialist now. I'm going to see Dr. Edelman at UCLA on Oct. 7th. But I don't Know anything about him. And if I not happy with the results, I'll go see Dr. Stevanovic at USC. I just might go see him anyway. I was WAY to patient with my present Dr. Time to fire him. Anyway, good luck with your quest to get back what you've lost. Keep fighting the good fight.

Karl,
I've met up with Dr. Edelman, who was highly recommended, but not specifically for BPI, just peripheral nerve surgery. I wanted to have a local doctor in case of need, since I had surgery at the Mayo Clinic in Minnesota. I found him to be a very good man, and quite intelligent, but up to date never had to use his assistance for anything. And he may be retiring soon, but not sure. Don't bother with Stevanovic, he was my main doctor while at USC post accident for 25 days. He has nothing to offer, sorry to say. Best of luck. If you're in the area, give me an email so we can exchange telephone numbers, maybe we can get together and trade war stories or at least compare scars. I've also got tons of info on other doctors outside of California. Let me know.

Christopher

Christopher,
Thanks for the info on Edelman and Stevanovic. I was afraid that would be the case. Tell me about your surgery, and the doctor(or doctors) who perfomed it. Its Sunday morning and the pain woke me up at 4am. The only thing that eases it is exercise or staying busy. I'm trying to get back in shape now. I broke my hip when I hit the car. Had to let that heal. Three months in a wheel chair. Also had a cervical collar on for four months. Frachured C5 and cracked one rib right at C5.I would like to start riding again but everyone I know thinks I'm crazy. I miss the high form riding and running. Maybe I can ride a recumbent bike. Does anyone out there run with a tbpi? I guess I should post that as a topic. Anyway I'll let you know how it goes Tues. with Dr. Edelman. I think I have to start looking at going to the Mayo clinic or LSU. Email me at karldphillips@yahoo.com if makes it easer to exchange info. Thanks again for the help.
Karl

Karl,
I've replied to your personal email address, if you don't get it let me know. Mine is cljanney@pacbell.net .

Cheers,
Chris

Karl, I'm also from California.My Dr. is at Stanford, Dr. Hentz. He's listed on the site. If you're not happy with the new Dr. I would highly recommend DR. Hentz. If you want to know more about my experiences with him my email is:
lorrie.broderick@bigfoot.com

I have had my injury for 16 yrs now. I was 17 and a runner so I had muscles and was in good shape. After two surgeries I sow a doctor @ Mayo clinic that put an implant into my arm, sort of like a shoulder pad under my skin. It was much bigger than just a shoulder pad. It went from my shoulder down almost to my elbow. It looked beautiful but after about 2 wks it fell off my shoulder. They went in and sewed to my neck muscles. Again after about 2 wks it fell, the stiches ripped through the implant. They then decided it was too big (they said I was fighting gravity) and removed it and filled me with expanders. They had another one made alittle smaller. Taps were made on them to sew to my neck muscles and even screwed blots to my bones. Sadly, it fell once again...this time it lasted one month. Its still in me. I sow my doctor in Feb. He thinks he could use Gortex (sp?) Lands End uses it in their boots and coats. Its almost weightless. He believes if he can have it made it would be the largest implant ever made for the human body. They use it for the face area now. It will cost 10K and my insurance will pay for it, so I think I'm doing it. If anyone is looking for a good plastic Surgent Dr Craig Johnson (Mayo Clinic, MN)is mine and he is a very kind. I hope this helps anyone out there wanting to look some what the same again. I've lived with this implant resting in my elbow area for 9 yrs but its better than nothing.