United Brachial Plexus Network, Inc.

Christopher-Good luck Tuesday!!! Dr Spinner is one of the best, is any other Dr assisting? I hope you get all you want from this next surgery. And beleive me if I find someone and/or something that helps with the pain you ALL will be the first to know. I'm waiting to hear from Dr Steinmann's (Mayo) nurse today. Keep me posted on your recovery.....

Hi kath it me todd, I'm going to see what they can do for me.I've had not one surgury yet so i'm going to see if they can help me.The thing that they mit do is muscle transfer to give me arm function i hope.DR. Bishop i read is really good,I would really like someone to try to help me,because no one has not done one dam thing to help me.so you can see way this has been really hard for me,they would rather have me cut my arm off and i'm not ready for that at all.I'm ready to work agian but i don't now what i'm going to do,I really like what i was doing, but it is hard to do home improvement with one arm it really sucks.It's really hard to carry a window up the latter with one arm.so I guess I'll go back to school,have any go ideals for work so i can make good money agian.thanks for the advise and i'll try to get a appointment with Dr.steinmann while i'm there.Thank's for every thing, do you no where there are some good Doctors at.
Todd~xoxo

Null,
I'm going in tomorrow to try and get tricept return by borrowing from either the somewhat working ulnar or median nerves that feed my somewhat functional hand. And yes, Dr. Bishop and Dr. Shin will be there with Dr. Spinner, to work on the old mess heap. Wish me luck, I'll be the first man walking this green planet to try this surgery out. It's something that my sister and I came up with after doing tons of research and meeting many doctors and I've been pushing for it since April, and I hope I'm not a fool for it. Take care.

Christopher

CHristopher,
I will be trying the median nerve for my biceps hopefull in the next month or so. I am waiting for Dr. Naths office to call back. Good luck and keep me psoted!
COurtney

Hello, I have been browsing all of these message boards and they are great. I don't have this condition but my 18 yr old cousin in Italy does. He suffered a really bad scooter accident 11 months ago and was in a coma and had a bypass, something with his clavicle and some other pretty major operations.

His family asked me for help because they felt here in the states we may be more advanced. Well through research and a ton of help from the Christopher and Dana Reeves Organization I was able to obtain all of this information. His arm is completely "flail" and he has a complete BP Avulsion. From reading these message board I was able to get some names such as Dr. Bishop at Mayo. I also contacted a Rick Abbot for Beth Israel in NYC.

He already had the nerve surgery where they take parts of your nerves from your leg, I beleive it's a nerve graft and it was 17cm. It's one of the largest ever done in Italy. The only reason why they did it was because he is young and still growing.

I don't think they are very optimistic about it and I think they want to see what can be done here in NY or wherever as opposed to what the doctors over in Italy are telling them. I can't imagine how hard it must be to learn how to deal with this sort of thing.

If there is anyone out there that speaks Italian, I am sure he could use the support from someone that understands what he is going through. I wish he could be able to sign on to these boards and read everything that I have read. If anyone out there has any information or suggestions that I can pass on, I would really appreciate it...doctor names, pain, if he has a chance to get any movement again, translation services, new buddies to chat with? Anything at all is helpful.

I don't really know him that well but I am willing to do everything it takes to try to get some kind of movement in his arm. Any help is appreciated. My email is: annybabes@aol.com and anna.antonacci@morganstanley.com.

Courtney - keep your head up. I think it's great that you are out there on your own living with your roomies. And if you ever want to chat I would love a new penpal.

Thanks Anna! I appreciate your support. I ahve emailed you personally so be on the look out!
Courtney

Hi Courtney -- I think that I'm still the oldtimer on the list when it comes to TBPI. Age 6 on the playground affecting left arm, hand & leg. Well, that was 49 years ago and back then in the Dark Ages, nobody even knew what TBPI was. I've never had any surgery, probably too late to be effective anyway. The bottom line is don't give up on yourself. You will need to be creative to come up with alternate ways to doing things. Don't ever say "I can't" until you have tried it at least a dozen times. You will be surprised at what you can do when you give yourself the chance. I was the first "handicapped" (hate that word) Eagle Scout in Michigan (yes, I'm originally from there, too -- Three Oaks and attended WMU)and am currently working as an archaeologist. I can dig with the best of them. Was a dorm pool champion, love to drive and travel. Married for 20+ years. If I can be of any help, just holler!! I've got a great many tricks up my sleeve. Bill

Hi I live in California originally from NS, Canada, I seem to be the only one on this site from the west coast. A lot of east coasters. I was in a ski accident 1-27-03. Along with a bunch of other injuries (some life threatening) I have a left bpi injury. Initially the entire arm and hand were flail but slowly some use has come back - hand first, then bicep. The radial nerve, suprascapular nerve and the axillary showed little or no improvement. I was referred to Dr. Hentz at the Stanford Hand and Upper Extremity Clinic. On 8-18-03 I had surgery which included cleaning out a lot of scar tissue around radial nerve and a 10 cm nerve graft of the axillary nerve. I may be having a 2nd surgery next month for the suprascapular nerve- depends on results of emg next week. My surgery went great - no complications. Won't know for a few months if the graft was succesful but hopefully will start seeing some improvement in other areas a little sooner. From the research I've done Dr. Hentz is the go to guy for bpi in this area, but I've been surprised to see that no one has mentioned him on this sight. So far my experiences with him have been excellent - he is informative, doesn't pull the punches but is caring, highly respected and specializes in bpi injuries! Has had hundreds of adult patients according to his stats. Just wondering if any of you have had dealings with him. He is listed on this site as one of the specialists but other then that haven't seen anybody else refer to him.