United Brachial Plexus Network, Inc.

Hi my name is Todd, I'm 39 years old i was in a sownmoblie accident a year and a half ago.I have a left TBPI no use of my arm or hand,i have root alvsion to my c6,c7,c8 and t1 that's what they say but i'm not for sure.I live in michigan and been to the UOFM and they did'nt want to touch me so i have not even had one surgury not yet.My accident about killed me i was in a coma for a month and in the hospital another two month's after that.I have and appointment to go to the mayo clinic in minnesota on the 24 of september to see what they can do.I did all of this three days after my mom was bearied.I was in the home improvement business for the last ten year's so i lost every thing i have been working for,and to top that off, I was going to get married and she bailed out on me so i lost all of that to for what reason.I guess some people can not deal with this kind of accident i guess:But I'm steal here and kicking, thank's to this message board and to all of the people on here,Thank you all:
God bless you all~
Todd Proffer

Todd
Dr Bishop is my dr, too. I had a muscle transfer done by Dr Wood, who was the CEO of Mayo and back in 1988 and Dr Bishop worked under him. I've been going to Mayo for 16 yrs and 32 visits and finally I'm learning (in past wk) that Mayo isn't the best place to go w/ our type of injury. It is rated the 2nd best clinic in the world but there are much better clinics and hosp. that deal only with TBPI. What is Dr Bishop want to do for you? He and Dr Steinmann wanted to do muscle and tendent transfers on me. Good luck and try to get an appointment with dr Steinmann at the same time so you don't have to make 2 trips, they work together. I hope they can help you.

I'm interested in why you think Mayo Clinic isn't so good for BPI surgery. One of the things that impressed us about Mayo was the team approach including different specialties:
Allen Bishop - Orthopedic, Hand & Microvascular
Alex Shin - Orthopedic, Hand & Microvascular
Robert Spinner - Neurology

All three doctors worked for 10 hours for each of John's surgeries, which would be hard to duplicate with the "single specialty" clinics. They have also studied under Kline (over a year) and others (including a prominent doctor in Asia.)

Another person who uses this board did a great amount of research, including overseas, before selecting Mayo. I can put him in touch with you if you want to provide your email address offline & he can fill you in on his rationale for choosing Mayo over the others.

Bottom line, it makes sense to interview several doctors. I'm sure most are very well qualified & to some extent you just have to go with your "gut". Good luck!

Ellen

Courtney (and Mom)

Just wanted to say that it was such a pleasure getting together at camp. You both are great people. And, lots of fun too!

Courtney, you have so much enthusiasm and I think you'd make a great "member of the board". Your personality is infectious! Whatever the bandana idea is with Tony, I think it's great!

I wish you well in school and hope to be in touch.

Love ya,

Nancy & Mark

Nancy,
It was great to meet you guys as well! I think that it was a great time at camp and that we all needed it! It's great to communicate with people that understand our injury, parents and injured alike. Tony and I were joking about the bandana idea and I think that we are going to try and get it into action! What a great idea.... MIA.... really our arm should be on that list! You and <Ark are great people as well! I think the support tha you have given Eric has been wonderfuil too! I talked with him today for a few minutes and I think that he might post on here! Itold him that he should! We shall see hwat will happen! Take care and I will keep you posted as to what surgeries etc. that I am going to do! Again nice to get tot put a face with a name!!!
Love to you both,
Courtney

Ellen-
Mayo is all I know. I was flown there after my accident to do surgery to see the extent of my injury. Then I had a muscle transfer done by two drs., Dr Wood (he is very famous and world known but now retired but we still have communication with him) and Dr Onofaro (sp?) I think he's moved to another Mayo clinic. I had an appointment with Dr Spinner in Feb and he looked me in the eyes and said "people with your injury live long miserable lives" I have never cried so much! Then Dr Bishop came in with Dr Shin and did a breif exam and thought I would be a good cadidate for three more muscle transfers. It was a risky surgery but they thought they could do it. I was told by Dr Bishop that the surgery would also be preformed by and with Dr Steinmann, shoulder specialist. We went back in March to see him and he felt I would only benefit from 2 muscle transfers and that I should do the shoulder fusion. I would do them at seperate times. I main reason I went to Mayo was to get relief of my pain but Dr Bishop didn't think these surgeries would relive any of my pain. They also said it was a very tough surgery to perform and its usually done on infants; I'm 34 and my injury is 16 yrs old. Dr Steinmann's nurse called me two wks after I got back and said they all the doctors met and decided just on the shoulder fusion and that I should come back to see one of their pain specialists. Don't get me wrong, Mayo is the best place and I am so grateful for all that they have done for me but after doing research and calling pain clinics I was told there are drs that deal with only BPI. I am not looking for more movement, just relief of my pain. Dr Bishop is one of the nicest Drs (other than Dr Wood) that I have ever had. I am extremely grateful. I am still going there, I have all my plastic surgeries done there by Dr Craig Johnson. Good luck with John, your in good hands with Mayo. My mother called it my second home.

help here??? What camp? Tell me about it. Where was it and when?

Hello,
My name is Chris, I'm at the Mayo right now getting a check up with Drs. Bishop, Spinner, & Shin later today. They performed muscle transfers and much more on April 15 for my BPI that happened last December 15. But I'm trying to push for one more surgery to save my tricep and ask about surgical options for pain, because I want to get off all these meds so I can see and think straight again. I would like to know who these other BPI Doctors are out there that are so much better than what the Mayo clinic has to offer. I thought I met with them all? I'm not defensive at all, just extremly curious. I only have a few months left to do an interventive surgery before my tricep and other muscles pass the time of no return, and can't be saved.
Thanks, Chris

Wow, I feel really bad that I came across negative about Mayo!! Mayo saved my arm. It was hanging there useless but having a fully functional hand. I guess I should start by saying my last three visits @ Mayo were for my pain but Dr Spinner, Dr Bishop and Dr Shin are not pain specialist. They were all willing and able to help me with my function but Dr Bishop said all the surgeries they could preform may not help my pain, only help me regain some movement. I am in unbelievable pain and I want to take of that before I do anything else and Dr Bishop agreed with me. I am proud to tell people that I have had the best doctors in world to help me after my accident. I was told by others (from this sight also) that there are doctors that can help with my pain at Johns Hopkins. I am curious to know what they can do for you. And remember everyones injury is different and slightest makes a huge difference and its also been 16 yrs since I had my accident. Alot of my muscle is gone and/or very week and you said "have passed the time of no return". My thoughts and prayers are with you....And who have you seen for your pain? Did they help? Kath

Null, I'm sorry Dr. Spinner didn't use a little more tact than that. It's not like we don't have enough trouble to deal with, than to have a care giver shove that kind of BS in your face. He has been nothing but completely kind and generous with me, and it troubles me, that he'd say that, considering he's opperating on me again on Tuesday morn. If you find out better help to deal with pain, or any aspect of your BPI, please post it here and let us know. Thanks and best of luck. After I deal with this surgery, the pain issue is the next one I'm tackling.

Cheers,
Chris