United Brachial Plexus Network, Inc.

I called this post the elephant in the room for a very good reason.

I find it very annoying, now that I know better, when I meet a new doctor and let them know I am obpi and they just nod.

They never ask a question or look at my arm.
They never ask the extent of my injury.
In other words they pretend they know what is wrong but won't admit they are clueless...

I thought (when I was young) they knew all about obpi and understood it was as good as it could get.
Now I have another opinion and it just ticks me off.
Why did they ignore it thus causing more secondary injuries.
If one of them had recommended OT/PT when I was younger would my compensotory movements been change.
Was there ever a time when there could have been some corrective surgery for me?
It seems to me that I suffer from medical neglect.
A pill to ease the pain in my shoulder, back was never going to truly help me.

I often wonder if I had a doctor who took the time to investigate the cause of my back, neck and arm problems perhaps some things might be different.

OK... I am venting a bit but it's sometimes gets to me that not once in my life did any doctor recommend I see a specialist for my bpi.

I know they were around before I found UBPN Dec. 1999.
By the time I found a specialist it was way to late and that's another thing that annoys me.
Just because I am older does not mean that I would not like to gain some improved motion.

Sorry but I guess I am having a bit of a melt down...

Kath robpi/adult

Kath,

I think you are absolutely justified in your frustration and anger!!! I feel so fortunate that Aria is in the care of an OBPI specialist, and I cannot express how much I wish a caring doctor had given you that same opportunity. You most certainly deserved (still do) the opportunity to reduce pain and gain more function. They did you an extraordinary disservice.

I wonder, though, if you could still gain more function... You are now very educated about your injury, and such a determined person! I'll bet you could!

I am not educated enough about this device to describe it well, but there is a machine called a "Myotrac" (or something very much like that) that helps you learn to reduce compensatory movements. The machine reads which muscles are working, then gives feedback through lights and tones. This way, for example, you could learn to use your deltoid to lift your arm correctly. Maybe this machine could help you learn to isolate and activate correct muscle groups...

Even if you are not interested in the machine, please don't give up on your ability to gain new function! My little girl has taught me the TRUE meaning of OBPI: One Bright, Persistent Individual!

You guys can do ANYTHING you decide to do.

I think you're just an amazing person, Kath.

Kath,
A meltdown here is well deserved. You are not the only one that has heard it I m sure, I just snap at the doctor when they act stupid like that. After I told on doctor that Brandon had a OBPI he said"Gee, he doesn't even walk with a limp" Well of course not you idiot, it is a brachial plexus injury.

MICA,
I love it, can I use it....
One
Bright
Persistent
Individual

LOVE IT, LOVE IT LOVE IT !!!

Gayle mom of Brandon 9 ROBPI
He is R eally-O ne-B right-P ersistent I ndividual
Love it, did I say it already, what a self esteem builder for my little man !!!! Thank you that made my day !

Mica

I think that was the way my mother thought of me.
Of course I was the most stubborn, determined child in my family. But I think they thought it was because I am the youngest.

I am going to look into that machine. I am so tired of them just ignoring anything regarding my arm.
It is as if I have put up with things so long it's ok.
These are same people that would never put up with anything wrong with themselves or their families.

I was having a bad day because I was annoyed I could not do something I wanted to do.
Some of the "girls" asked if I would like to take golf lessons with them.
I know that I have to have special instruction.
My husband has been trying to teach me to swing but I don't think my arm will move that.
Due to compensatory injuries I can't do things one handed anymore...
So I am just ticked off and wish I had put my foot down and demanded more answers.
I think I am ticked off at myself for not pushing for better answers.

Do you have to own one of these machines or do they have them at rehab places?

This sounds interesting...

Thanks for the kind words

Kath adult and definitely OBPI... LOL.

I understand your frustration all too well. I am 30 years old and never had any surgeries to fix my arm until 3 years ago. The surgery was unsuccessful and I am left with more pain. My injury is quite extensive, in that I am unable to lift my arm or bend my arm at the elbow.

My husband had a great job until a year ago. I used to stay home with my kids so I was never in a lot of pain in my "good" arm, but I had to find work when my husband lost my job. Since I have been doing a lot of computer work I have extreme pain in my "good" arm's fingers, wrist, and shoulder. I also have a lot of pain in my neck and back from compensation. I want to find a doctor that will help me overall, but at this point BPI doctors just tell me there is no hope to regain function in my arm. I am okay with that and I have always been okay with never using my right arm. I just don't want my left arm to waste away so early in my life. I have filled out paperwork for disability but that seems like a joke.

I pray that I will get some relief from the pain I now have or that I can get disability compensation so that I do not have to use my left arm so much.

Heather

Kath,
How frustating! I am sure the times will come when some one asks me to do something that I havent yet figureed out how to do and I will get as frustrated as you but one thing I like to remind myself it that if there is a will, there is a way. You will have to go spend a week with Nancy to get the gold thing down and then your girl friends wont even hold a candle to you! I know you can do anything that you set your mind to! You have been there to show me that for as long as I have been a member of the boards!
Your awesome and there is still hope for you, you just have to find a doctor that will listen to you, bpi specialist or not! I would be willing to share my doc, if he cant give me an answer he will research until he finds one!

Mica you are awesome and so right on with OBPI! I love that and I think I will make a poster out of it and hang it on my wall in my apartment. Thanks!

Heather, do you use mobile arm supports? Those will help your pain with out a doubt! I am getting my second one soon as my left arm is stating to fatigue while typind and I have to rest it on the counter. So I am getting another arm support so I can rest my arm more functionally. I also use an arm support for my right so its not such a dead weight. Less strain on my shoulder less pain overall. I can find you a link if you want or if you see an OT/PT ask them and you can get them through your insurance.
I hope your pain goes away!

Hugs,
Amy 20 years old ROBPI from MN

Kath,

You are entitled to a meltdown every now and then. Everyone is. Don't beat yourself up about that. Even the Geico Caveman has an "existential meltdown" in one commercial! Think about it -- what if he were a real person, having a meltdown each time that commercial ran. How many meltdowns would that be? ... Are you smiling, yet?

I know how you feel. My doctor ignores the elephant in the room, too. Next time I go to see him, I should bring a copy of Outreach. Maybe he'll read it. Then we'll see if he sees the elephant in the room after that.

Yes, medical neglect. Once a doctor sees what I cannot do with my left arm and hand, it's like he's thinking, "Nothing to be done there. Moving on..." A few doctors have shown some interest, but because most did not, the interest that was shown just made me uncomfortable. I thought things like, "Your time with me is limited. That's not what I'm here for. Pay attention to what brought me here, so we can fix that problem."

I was unaware of the term brachial plexus, let alone that I had a brachial plexus injury, or that anything might be done to help me regain function in that arm. (Regain is even a difficult word for me to adjust to, because I haven't had those functions since I was born.) Now I am too old for any surgeries to help me. If there are any exercises that would help me, I don't know what they are, or how to do them. I feel neglected, too, so I can commiserate with you.

Joanie

Thanks All

I know I will try to see if it is possible for me to golf.
My friends encouraged me to play tennis and I tried for years.
I could play well but could never master a serve.
They were more than willing to serve and wanted me to keep playing.
I found it so frustrating because I could never give up trying to serve.
I found myself envying those who even had a terrible serve...
Now I worry about wanting to try another sport that I can't master.
It is the stubborn side of my nature and I hate calling attention to my self in any group.
So I will try on my own and if I can't I will beg off.

First I have to determine if I am left or right handed.
I don't even know if I like golf but at least I want the opportunity to try.

As for the medical battles.
That is still a big frustration for me.
It seems that I am always asking for some sort of treatment like PT and yet it is never recommended when I have pain and secondary issues.
No one connects all the secondary skeleton issues with the initial bpi injury.
I have been told, more that once, it only affects my arm.
Oh... and I love-- "there are no studies to back up my assumption that my entire body is affected by bpi injury."

Joanie, I have give Outreach to all of my doctors and I think only one of them reads it!
There is no interest in making life pain free unless I want to take pills... UGH!

Oh well it's almost Camp time and I will be meeting with my peers (adult/bpi) and we can help each other with our frustrations.
I know for sure we will end up laughing at ourselves.
Since we all seem to share a bit of bpi humor.

Kath robpi/adult

Kath you should really consider coming to MN and seeing my dr. He really listens to me and if I ask for therapy, then I recieve a script for therapy. He understands that we are the ones living with the injury and not enough info is out there. I would share him with you, plus he is a bit of eye candy Or at least I think he is. Oh and we would have to make it a date that I could come and see you!
Cant wait to see you at camp, only a few days left!
Hugs,
Amy

OK , I'm back,girls.... 5 more days and we wil HUG each other and laugh and pass on to one another that O-B-P-I that Mica says we have... and you do know that you will find a way to play golf,Kathleen!!

I am willing & praying you all a safe trip here to my "neck of the woods" and to Camp.

HUgs all around for now...ta ta,
Carolyn J