United Brachial Plexus Network, Inc.

Patty,
My name is Dawna and my boyfriend was in a motorcycle accident on 7/27/03. He too had avulsion of his nerves C5--C8 and T1. He is able to shrug his shoulder, but no movement or feeling of his entire left arm. He just had his first of several big surgies. On Nov. 29th he had nerves taken out of the back of both legs and inserted into his shoulder. His surgeon told us that he won't see results of this 19 hour surgery for about 2 to 3 years. During these years he'll be going through several other surgeries. His next will be to take the gracilis (spelling) muscles out of his thighs and insert them into his bicep and tricep area for forearm/elbow flexing. I found this support group about 2 months after his accident and reading these stories and talking to the others has helped me out sooooo much. I print out stories and info and bring them home for him to read. It helps him out so much to understand that there are so many others out there going through what he is. I wish you two the best during this trying time. ~~Dawna~~

Patty,
Looks like every one else covered all the basics, but my two cents worth is this: FOLLOW THE ADVICE LISTED! I had my accident 11/09/90...thirteen years ago:( The procedures weren't available at that time to give me use back...and we all know about that "window of opportunity". Unfortunately my window closed over a decade ago but I did have a couple things done during that time. My injury: C5-T1 Avulsed (Motorcycle Accident). First procedure was six months after the accident, at Duke University by Dr Allan Friedman. That procedure was the infamous D.R.E.Z. as it's known. That's actually a DREZ lesioning...where they go into the Dorsal Root Entry Zone and "burn" the sensory nerves to eliminate the pain. Believe it or not, it actually worked...for a few years. Several years ago, the pain came back and return visits to the Nerosurgeons showed that I can't have that procedure again b/c of the "maximum yadda yadda something about needle size and temperature ranges used in the procedure". So I live with that pain...trying to keep it at bay with pharmacuetical candy that I absolutely detest having to take. Two months after the DREZ, I had the intercostal nerve transposition (same Dr at Duke). It gave me flexion of my elbow and actually made some of my movement look natural (uninhibited, thus less likely to be stared at in public). The only surgery I had that I regret was seven years later when I let Dr. James Nunley (at Duke also) fuse my humerous to my scapula, so as to allow me to control movement of my upper arm with my shoulder. Although it's not much, it's GREAT as far as looking natural in day-to-day movement. It's the frequent pain from hitting it too hard, sleeping on it, laying on it the wrong way, etc...that makes me regret the surgery. My ultimate would be to have what Dawna mentioned regarding her significant other. It's long since passed my "Window of Opportunity", but I don't see, since they would be taking grafts and connecting them, why that wouldn't stamp out the "window philosophy", since that window is there because they say that after a year or so, the nerves wouldn't "remember" which body part to go to or to control. Maybe I'm over-simplifying things, but in your case, I highly recommend that you (your bf) take whatever means of repair available, but MOST recommended would be the procedure that Dawna described.

Dawna-

Thanks for your reply. Can you please tell me more about your boyfriend's surgery? (The one with taking the nerves from the legs) Thanks again for your post! I do the same thing you do- I'm always reading Mike other people's stories! It helps!!!

Patty,
first off.....where are you and Mike from? We're from Massachusetts. We found a great doctor at one of the Boston Hospitals. We were actually going to go to MD and see Dr. Belzberg, who everyone raves about, but we were referred by one of his other doctors to try this guy first. He is a great doctor. His name is Dr. Jonathan Winograd out of Mass General Hospital in Boston. On our first initial appointment he examined my boyfriend, read over his medical records(he was in the hospital for a month due to his motorcyle accident)and then pretty much said "I'm going to do this, and this, and this". I was amazed at his knowledge. He knew exactly what he wanted to do and what he had to do to help my boyfriend regain some of his function back. Our appointment was one week before his first surgery. Dr. Winograd understood the importance of getting started as soon as possible and booked the surgery right away. I wish I could discribe in great detail his surgery, but I'll do the best I can. Dr. Winograd cut about 5 3" incisions down the back of both his legs. He took out nerves and inserted them into his neck/shoulder area. He cut my boyfriend from right behind his ear region, down his neck, across his peck(just alittle), then down his side across his rib area and stopped right around where you can feel where your ribs stop. He took a nerve out of the chest area as well which left him without sensation above his left nipple. These new nerves will give him his sensation back. ( no more burns on the stove. we had a few of those) It will take about 2 years the doctor said before he starts to have sensation back, but its better then not having it at all. His next surgery is the biggie. The gracilis muscle transfer so that he will be able to bend his elbow. Hope this helps and sorry if I babbled. Imagine me telling you in person.... thats what I sounded like to his family while trying to describe what he went through. Babble, Babble, Babble. They must have thought I was nuts. Well actually I was after being in the hospital waiting for this 19 hour surgery to end. Take care. ~Dawna~

Dawna-

We live in New York. Mike is scheduled for the intercostal nerve transfer on Jan. 20th. We were interested in your boyfriend's surgery. We haven't heard of that one. Is that more for sensation?? That had to be done a couple of months after his surgery? Thanks for your reply on our disability problem. Mike doesn't want to be on disability either. He much rather work. Mike's job prior to the accident was as a carpenter- Do you see a problem there?? He needs training in another career so if he's able to receive disabiity he'll be able to do that. (Or even partial disability) Mike's been out of work since July. Things are pretty tight and Mike's savings are diminishing. I'll let you know what the lawyer thinks of our case and our chances of getting disability this time around. Thanks for writing. Looks like we have a lot in common.

Hi Dawna,

I don't think you're nuts! Just wanted to let you know that we're from CT, my son was just turned 20 at the time, and had our surgery with Dr. Tiel in New Orleans. The one thing I wanted to let you know is that about 4 and a half months post-surgery Eric started feeling the flicker of movement, and it was visible to the eye. His surgery was intercostal nerve transfer (nothing for sensation) but it's considered to be very successful. Eric had total avulsions and he has gotten return of movement to biceps and deltoid. He's still seeing recovery and October 2003 was 3 years post-surgery. Very shortly he'll be going back to physical therapy because Dr. Tiel thinks it will maximize the movement he's gotten back. Not sure if he'll pursue any additional surgeries for lower arm...the one thing he's considering right now in the long term is the DREZ because pain is the worst part of the injury for him.

It's tough, I know. I did SO much research after Eric's accident...luckily I found this site only a month after the injury. Thanks to all for sharing. It really helps.

I believe it was for regaining sensation. I'll try to find out the exact name of the procedure from his doctor. Besides the nerve transfer he had to have some work done on his shoulder due to the past 5 months of dead weight. His shoulder muscles and bones were sort of out of place due to his arm being too heavy and hanging too much. But the nerves were transfered for sensation and I believe they have to do with the "complete" surgical aspect of getting everything working again. That surgery will benefit future surgeries and the future surgeries will benefit that surgery. It is a long slow process we're told. It does sound like we have lots in common. My boyfriend went to a vocational high school to do his trade, HVAC, and has been doing it for over 10 years now. He knows nothing but that. He is going to have to completely change careers just like Mike. I guess he could get into management or maybe he could go out to job sites and figure out what units they need, but he really enjoyed his hands on job, he chose it when he was 14 years old. keep in touch and I'll do the same.
Dawna

I had a TBPI injury 5 years ago.

I was 32 years old and had a motorcycle accident. I have 4 root avulsions. My dominant arm became totally paralyzed, and is still flaccid. I'm writing to tell you that life doesn't have to end because of this.

Adjusting to life physically with one arm was easier than the fears about financial security and body image. I was a chef for 13 years and I had to find other employment because I couldn't cook with one hand. A big loss. I still deal with nerve pain, so I take Neurontin to control the electical shooting pains. I have come through this affliction, so I want to help anyone who is now going through this.

I am not diminishing the emotional pain and depression that may occur, but I had hope. I wasn't ready to sit home feeling sorry for myself. I now work full time in an insurance company. I'm self sufficient and independent. I feel lovable by others and have gotten over body image issues.

At one point I visited Dr. Rahul Nath about surgery. (http://www.drnathbrachialplexus.com/surgeon/index.asp) I was desperate to regain my arm movement. It turns out that re-routing those nerves would leave me temporarily disabled, more than I was, and the prognosis for regaining movement was very slim and would not be seen for years. I had been living for one year with a paralyzed arm just fine, so I chose not to go through with the surgery. It was a turning point of acceptance for me. I didn't want to get all cut up so that I MAY have weak bicep movement in 3 years. I'm glad I made that decision.

I find this webpage helpful-> http://ubpn.org/awareness/A2002adultinfo.html The Internet didn't have the resources in 1998 that it has now.

I realize this is a very personal and delicate subject for the sufferer. I am willing to chat about my experiences with anyone who may need help and hope for the future.

With Blessings
Joanne
roary76@yahoo.com