United Brachial Plexus Network, Inc.

Ellen~ Sounds like John is doing great! Its such hard work and seems like its never going to end, well I'm on 16 yrs now so I guess it doesn't ever end. I was very pleased with my muscle transfer. They cut my tricep muscle at the elbow (making an incision on the back of my arm) then made a "S" cut on the inner part of my arm where it bends and disconnected my bicep and connected the tricep there. I was casted for 4 wks, removed my stiches and cast for 3 more. I started PT @ Mayo and then they trained a PT here to work with me. I did the baby powder on the board and was told to think to straighten.....that was tough because my arm was already straighted. Over time and ALOT of PT it worked!!! To bring my arm down again I release my muscle and gravity takes over. Thats all I've had. At that time (1988-89) thats all they could do for me. My Doctor was Dr Wood, if you mention him to Dr Bisop he'll know, I believe Dr Bishop trained under Dr Wood and Dr Wood was once the CEO @ Mayo, he's retired now. I went on to Plastic surgery because I was done w/ them and I hated the way I looked. I was only 18. Dr Melon was my PS (plastic surg.) at first. He designed a implant to "fill out" my arm and parts of my back. I had expanders put it to stretch my skin and a company designed a shoulder/upper arm for me to be inserted under my skin. It was put in and fell. They went in and put tabs on it to attach it to muscle and screwed it to bone, it fell again. Dr Melon left and Dr Johnson came in. He felt it was too big for me and it was fighting gravity. He removed it & put in the expanders back it. He shaved it down to make it smaller and put holes into it hoping tissue would grown into it and hold it place.......no luck. It fell again. After that needed a break. I got married and had three children. I went back in Feb because the pain was getting really bad. I sow Dr Spinner and Dr Bishop. They want to do more muscle transfers to help raise my arm but its a huge surgery and a year recovery with alot of PT. I'm not 18 anymore and I've lived 1/2 my life like this. I have 3 little ones and I can't leave for a year. I've excepted my injury and I want my pain gone. I still think about doing it and its in the back of my mind, just not now. I tried neurotin and I was up to 4500 mg a day and had no idea what was going on. I weined myself off of it. I've NEVER taken anything for pain. Neurotin was my 1st. I'm not sure what to do now. I went to see a PT in my area (I'm actually 50 miles N of Chicago) and the PT's out here have never seen my type of injury. I sow a DR at Northwesten Hosp that wants to do DREZ, no way! I'm at a stand still.
Yes, I have alot of back pain. My shoulder needs to be fused, I had a x-ray @ Mayo in May. I also need the implant fixed and Dr Johnson wants to use gortex. Before and after pics are on file @ Mayo, I have none of my own (sorry) That was difficult for my parents, to see me getting pictures taken, I had nothing on from my waist up. I think they want to forget that part.
My injury was a result of a motorcycle accident. My boyfriend got it as a grad. present and we hit a tree head on @ 55mpr. He lived for a month and died on his 18th b-day. I was a cheerleader, in track, and a swimmer. I promised my parents I would never go on I it. I know how your son feels. I was suppose to go to college that fall. My life was on hold for 6 yrs and 32 trips to Mayo. I still don't know what I waant to be when I grow up.
I'd love to talk. E-mail me @ Herff94@yahoo.com.
sorry everyone for the very long letter...anyone sleeping yet?
Kathleen

Hi everyone it's me todd from michigan, I was going to have the muscle transfer on the 29 of october but my insurance was'nt going to pay for it so it did not happen.I was looking forword to it very much.I really wanted dr. bishop and the other two doctor's as while. I have been really bomb out about it.I have had not one surgery yet becauce no one has done a dam thing to help me at all to get some use of my arm at all that is getting very hard for me to deal with.

take care every one if you would like too talk
call me. (810)691-8443
Todd proffer

I have a brachial plexus injury from a car accident in August 2003 and would love info from all of you and about the story on discovery channel. I have a C5-c6 brachial plexus injury and i'm 32 years old.
anyone feel free to write!
Dan Stewart
danstewart@mony.com

I was reading through the messages. I just found this site a couple weeks ago. I didnt see the Discovery program but Courtney is going to send me a vcr tape. Our son had his accident in 95 and he is now31 years old. We went to Dr. Kline at LSU medical center and he said because his nerves were avolved that surgery would not help. He has learned to live with his totally paralyzed arm but is in constant pain. However, if something could be done at this stage of the game we would definitely want to investigate it. Do you know of anyone that has my son's condition, brachial plexus root avulsion, post injury 9 years, then having surgery and there has been improvement that was actually worth doing something? Please email me. I am driving myself nuts. I also know about Dr. Nath but didn't then when my son's accident happened. We live in Florida and flew to New Orleans to see Dr. Kline and Dr. Tiel three times after he got out of rehab. He had also been in a coma and we are glad he is alive. Please email me. Thank you.
Linda

Hi Todd, it's Ellen (John Floyd's mom).

I was so sorry to read that you've had problems with your insurance. Had you originally been scheduled for surgery at Mayo? What were the issues re insurance? Will they cover surgery with another doctor? I do know from John's surgery that sometimes out of state insurers will work with their Minnesota counterparts so that the coverage is in network - thus copays are much much less for the patient. But I assume you've checked into all that. How frustrating this has to be for you.

Let us know how you're doing, and if any other options are out there for you.

Take care,

Ellen

Hi Troy,

I have very good experience with a muscle transfer. After a motorcycle accident in 2000 I had a BPI at my left arm. Last year in May I had a transfer of my forearm-muscles to restore elbow flexion in combination with an osteotomy of my upper arm. First I couldn't believe what the doc promised me: at least 90° elbow flexion!?!? But he was not telling jokes, I have now an active elbow flexion of 100-110° which means, I can reach my face with my left hand!
A friend of mine got his triceps taken for biceps, now he can almost reach his face too. It's soooo great!

So if you still wonder if you should do it or not - just do it!

Nicole

Nicole~
How great for you!! I, too, was in motorcycle accident but back in 1987. I had my tricep made into my bicep like your friend. What was your damage in your accident and who did your surgeries? Where are you now w/ the future and more surgeries?
Kathleen H

Hi Kathleen,
after my accident I had two broken legs, a broken arm, a broken shoulder blade and last but not least a bpi with c8 torn out of spine. The several surgeries at my legs were done at Marburg university clinic and the muscle transfer at Medical Highschool Hannover (Germany) done by Dr. Ruehmann. I think Dr. Ruehmann did a very very good job with my arm and I don't believe there is any other kind of surgery which can still improve my arm function. What is more, I have fed up with surgeries (6 within the past 3 years) and rehabilitation and I really need a break! Which doesn't mean of course that I wouldn't do it if they should be able one day to restore the deltoid function so I'd be able to lift up my arm again.
How successful was your tricep-bicep transfer?

Nicole

Hi Kathleen,
after my accident I had two broken legs, a broken arm, a broken shoulder blade and last but not least a bpi with c8 torn out of spine. The several surgeries at my legs were done at Marburg university clinic and the muscle transfer at Medical Highschool Hannover (Germany) done by Dr. Ruehmann. I think Dr. Ruehmann did a very very good job with my arm and I don't believe there is any other kind of surgery which can still improve my arm function. What is more, I have fed up with surgeries (6 within the past 3 years) and rehabilitation and I really need a break! Which doesn't mean of course that I wouldn't do it if they should be able one day to restore the deltoid function so I'd be able to lift up my arm again.
How successful was your tricep-bicep transfer?

Nicole

Troy: I was interested in muscle type transplant since my deltoid totally got cut in an auto accident. Is there any hope of finding out who might do tyhis type of operation?

Jim