United Brachial Plexus Network, Inc.

Well- I spent the last 10-12 days in hell. The "specialist" who was gonna do all these great things for me got my MRI's back and all his swagger and arrogance was gone. He very sheepishly (in my opinion) said this was" out of his league". So he's refering me to another "specialist" and I already know about what to expect. Meantime I have a pain clinic appt Monday and after being in the E. Room 4 times this month I imagine he'll drop my case.See-nobody in the medical proffesion wants to face the idea that a human being could possibly be in this much pain. So they call me a drug addict, tell me it's all in my mind- in general they make it out to be my fault. So- I'll hang on one more month, see what this so-called "specialist" has to say- meantime I got 1500 mgs of trazedone saved up and I think it's about time to consider calling it a day.I've had ten years of this shit-almost every Dr. I've seen has made me feel like a weak sorry drug addicted loser who can't handle a simple amputation-(they have a very convenient way of 'not seeing' the bpi).I think I've just pretty much had enough. Everybody's got a breaking point- I'm just about there.I got no more fight left in me.-Ronin

Ronin - You got fight left you; otherwise, you would not have posted here because you know the level of support that you will get from all us tbpi sufferers. I am sorry to hear how the doctor victimized you with his arrogance and swagger. The pain is not in your mind - I understand your pain. I wish that the pain was just in our minds that would be a hell of a lot easier to deal with. Hang in there !
-Rich

Eric,

You are not at fault. It is not in your head. It is real.

We are here. We will listen. Don't go.

Please.

Henry

Eric!!! isn't the guys name Ronin...don't push him over the edge...

Ronin/Eric Would you not consider the DREZ. Wonder why specialist wanted to see MRI, an avulsion is an avulsion it doesn't change from year to year. What did he think you had originally that he thought he could do wonders for.

Ronin - I do not know anything about you or your history. I just came on this board and read your post and can feel how desperate you are right now to find some relief. I don't know what you have tried or not and I don't know what the generic names of the drugs are like the one you mentioned.

I do know, however, that there is a woman with an OBPI who was recently (in the last few months or so) tried methadone and she's very happy with the results - saying that she has freedom from pain for the first time. I don't know if this is an option for you or if you have tried it or not but it might be worthwhile. Judy posts on the OBPI board - maybe you can talk to her about it?

Also - I don't know where you are from either, but there was a doctor at the UBPN camp this summer - Alan Belzburg who is a bpi pain specialist. He's in Maryland and his contact person's email is sparadi@jhmi.edu - stephanie Maybe you can contact him and get his viewpoint? I remember hearing from others that he had much to share but I didn't listen in on his talk myself.

I'm all for respecting a person when they decide it's time for an exit. Only they know what they are living through. But I am hoping that you keep on trying to find an answer... sometimes the biggest shifts come right before our complete breaking point. Don't lose hope.

God bless you,
francine

Hi Ronin / Eric,

Please don't give up hope. I feel so sad to see people give up hope. I told my dad to be brave as he too have BPI. On top of that, he had infection after the spine specialist fix his C6 & C7 injury (he open up his front and back. Unfortunately, the back bone got infected). They treat him with heavy dosage of antibiotics and it gets well each day and finally discharged on the last day of Dec 2003.

Just 2 days ago, the infection specialist say that she want my dad to go for a bone scan coz the blood test result is a little high. So other than having to endure the sharp shooting pain (seems to be getting this few days as I use a nerve stimulator to stimulate his left hand in the hope that he can recover some functions / sensations) every day and night, we now also have to worry about the infection. I do pray hard that it is not the infection coming back. Hopefully, it is just the specialist wanting to make sure that everything is fine.

So you see, practically everyone on this website has their sad story but are all brave to live on as they know that they can get support here.

SO PLEASE DON'T GIVE UP. PLEASE DON'T SAY THAT THIS IS THE END. YOU MIGHT REALLY MEET THE RIGHT DOCTOR AND HE WILL BE ABLE TO HELP YOU.

Regards,
HY

Ronin

Dr.Belzberg at Johns Hopkins in Maryland is the pain specialist that Francine mentioned. He gave a presentation on bpi pain and boy did he know his stuff... he does not believe that bpi pain is not real and/or bpi are drug addicts... He was the first doctor to acknowledge the fact that OBPI like me have pain some worse than others... I am 64 and that's a great many years with bpi injury some years are better than others... but don't give up... get a BETTER doctor. Your pain is real -- and don't let anyone make you feel bad for telling the truth about the pain or seeking some relief. Please contact Dr.Belzberg and see if he can help you.
Please get help and don't give up.

KathM

Well fu*#**k Eric-Haven't chatted with you for awhile and I know you've been struugling with this for so long. I wrote a few months back about how cruel this injury is. Not only do you lose an arm but you lose everything that made you - you before the injury. The pain is so encompassing that you can't even have a sence of humor because you're trapped in this bubble of pain while the world goes on around you, and all you can do is watch and get more angry, more frustrated and more depressed. I too have been targeted as a drug dealer for the soul fact that I'm young, not upper class and my injury looks painfree to the outside world. And at the end of my post about cruelty, I stated that there really is only one way out. And you're right, it's the end. Thoughts of suicide will always be on the back burner of my mind. I had my 3 month post surgery meeting just a little while back. My Dr. is Alan Belzurg, and he came right out and said to me, people will and do kill themselves because of the pain. I told him I've been on that edge twice and he made me promise him that before I take that jump, I would call him and he would do anything that he could to help me. I was so glad that someone out right told me that people kill themselves over this. It's a double edged sword because I could use that as a validation reason to go thru with it. Please give his office a call if ity's the last thing you do and be frank and honest about your intentions. His number is(410)955-5810. Ask for Jade his secretary and at least you'll talk to a doctor who will believe you. Take care, I'll e-mail you my number if you want to talk about this cruel cruel world.
WITH ALL MY HEART LOVE SUSAN