United Brachial Plexus Network, Inc.

Dear "Punchy" - I know better than to call you Sue!

DEFINITELY go with Dr. Belzburg - we met him at the UBPN gathering at Lake George and got some one on one time with him. We think the world of him, and he is THE BEST, I think, at understanding the severity of BPI pain (and he has solutions). My son, Eric, 23 years old, has a trauma injury, avulsions, for about 3 years. We had surgery in New Orleans with Dr. Tiel (Dr. Kline's protege) and he's a great surgeon. Right at the top we think. But, he doesn't have much in the way of solutions for pain relief. Dr. Belzburg DOES. I'm sure he will tell you about the DREZ lesion which Eric might consider a few years down the road. Eric had/has TREMENDOUS pain issues. It's gotten better over the course of time and mostly started improving once he went back to work, school, moved out on his own, etc. We tried everything with the most promising results from biofeedback therapy at a psychologist's office. You will learn to manage the pain better, trust me. I have witnessed your pain through my son and I know how bad it is. Please hang in there.

I will agree wiht Nancy about Dr. Belzburg, he is a great man! He is the best of the best especially when it comes to pain! Keep with it and if you need to vent email me!
Courtney

Nancy
Thank you so much for your support and advise. We are definatly going to see Dr. Belzburg. I hope that your son's pain lessens as much as I pray mine does. The world is a wacky place. I just have to figure out why I am still alive or not in a coma. The docter's are always surprised at my symptoms. I don't have Horner's (I think that is how you spell it) and I have feeling in my arm were I am not supposed to. As I think everyone knows, Docter dish out a lot of bs because patients put so much emphasis that docters are God and can wave that magic wand and poof - you're healed. I wish I could stop thinking about my freakin' left arm if only the pain would go POOF! This injury as most medical issues is so draining. If only I could crawl in a warm cave and hibernate for the winter and upon arousing in the early spring - things would be more settled and the pain would be managable. It really SUCKS that I only sleep 3-4 hours a night so forget hibernation. I can't remeber the movie title but it had Bill Murrey and Richard Drifess. Bill's character was a complete hypocodriact and Richard's character was a pyschologist wo wrote a book about "baby steps". It cracks me up but I tell myself that every day - "just take BABY STEPS and you can always reach your destination". BABY STEPS TO ALL AND SOMEDAY YOU'LL REACH RECOVERY!
Thanx Susan

Hi susan
sorry to hear about your accident. I know the pain can be really bad but the pain will get better in time. I was experiencing the same extreme pain you were about two years ago. The only thing i found that worked for me was medication. I was taking Neuontin, Amyitryptilene and Oxycontin. I found that the Neurontin and Oxycontin worked the best. Most people would advise you not to take the Oxycontin because it is such a strong narcotic (it is also very Addictive). But it has helped me get through the first year and i am now off the Neurontin and coming off the Oxycontin. Also it does not always work for BP pain. Hopefully you can find some way to ease the pain and this helps you somehow.

Andrew

Hello Sue,
So sorry that you have all this crap to deal with, I know its overwhelming, but you will get through it, you must trust in that. The advice that helped me the most when I first started trying to harness all of the burdens of doctors and surgeries and life changes was something my older brother told me, 'that I had to know just as much or more than all the doctors I saw knew, I had to make it my mission'. It seemed like a smart ass impossible remark, but the more I learned and more I asked and more I discovered that no doctors have all the answers, the more I felt like I was getting control again of the road side pile up that once was me. Don't believe that you are at the mercy of any one doctor's opinion, and go in with an open mind and have some one there to help you. To help you balance the loads of information that you must ingest. You are probably going to be listening and waying out options on an emotional (drug induced) basis, make sure that other person is there to listen from an analytical point of view. And never forget, this is your arm, and how much is that worth to you? I'd fly or drive or hitch hike or crawl to thye moon to find the right doctor to help put me back together again. As far as pain, I agree with the previous post about the oxycontin, I'm on oxycontin, neurontin, elavil (amitriptyline), and gabitril. I don't care if I'm addicted to any of it, I'd rather take care of the pain first so I could deal with living and getting the best help, than deal with the possibilities of addictions, once I've healed from surgeries. If you want to learn about BPI surgeries and options, get an anatomy book that deals with neurology or better yet a BPI book, of the few that I purchased, the best for easy understanding and ingesting (once I learned about basic neurology) was -Hand and Upper Extremity #14 -- The Brachial Plexus- edited by Robert S. Boome, I got it from amazon.com. Just to let you know, I had what will probably be my last surgery a couple of weeks ago, but it was one my sister and I invented (to our knowledge) and had never been done before. After pushing and pushing, the doctors finally gave in and did it, with aprehension at first, until they were done and then so happy they had. It taught me that any one can learn anything if you want to.
The team I chose are at the Mayo Clinic in Rochester Minn. They're great! Dr. Spinner, Bishop and Shin. They work as a team, and the three of them bounce around ideas till they find the best sollution for your specific situation. I met with Kline and Tiel at LSU and Wolfe in NYC (they all know each other) and the team at the Mayo Clinic offered the best options and recovery, the three of them all operate at once, and what would have been 3 or 5 surgeries and taken over thirtyfive hours if I chose one doctor, took twelve and a half and done in one surgery.
I know it's alot to deal with, but you can do it. Now, when all you want to do is curl up and hibernate it through, is exactly all I wanted to do, and still want to at times, and I do here and there, but you've got to bite the bullet and get the best help you can. Rest after surgery, but not until you know you're in good hands and then you can trust in that you did all you could, and now it's up to the doctors. Best of luck and Godspeed. You are in my prayers.

Christopher

feel free to email me personally
cljanney@pacbell.net

Andrew
Thanx for the positive vote on Oxycotin. My docter has trying to push me to use it but I've been too scared to try it. Personally, I have two friends addicted to it. They go nuts if they can't get it and they are not using it for pain. I still don't know. I've tried Vicadin and Percacet and they don't seem to help to much unless I follow it with a beer. and both of those drugs are basically the same as Oxicotin, being Codeine is the key ingredient. I know that sounds horrible that I would use alcohol with my medication, but if you're in pain sometimes you just have to do whatever will work. I'm supposed to start Oxycotin next week, so I'll keep you posted.
Thanx Susan

Howdy Christopher
As I wrote to Andrew, I am going to try Oxycotin. As to having knowledge about the anatomy, My back ground is in Biology and I've spent the last four years studying and then practicing to be a certified massage therapist. I have all my anatomy books, but, sh#t it's difficult to figure the nervous system. Also, props tp you for being so proactive. I guess when I get my head a little more clear,or in less pain, I ccan only hope I can be as strong as you. Docters are damn intimidating.
Thanx Susan

Hi Susan!!

I wrote you on your other thread--"there's no crying in baseball".....SO GLAD to see that you're coming up our way to Maryland to see Dr. Belzberg!! I think you'll get a straight answer from him, and somehow, if y ou know what you're facing, be it good or bad news, it's easier to take and work with--it's the not-knowing that is the worst!! My husband David goes back to see him in November after his next EMG study--things are not 100% yet for hom--actually not nearly so, but he IS improving--Dr. B will tell you to do range of motion and stretch those muscles and ligaments from your fingertips to elbow, several timea a day--to keep muscles from atrophying--shrinking----among other things--start the range of motion NOW!!! if you need directions info on the Baltimore area, places to eat, stay, etc. email me and let me know--have lived her for 308 years, as has David--email to ds33@intergate.com--good luck--we'll be thinking of you October 10!!!~~~~~~Suzie~~~~~

Geez, I sound like I'm ancient--308 years I've been in the Baltimore area!!oops!! I meant 38 years!! Good luck, and hang in there!!~~~~~Suzie~~~~