United Brachial Plexus Network, Inc.

I'm so tired of hearing that. Why is that have to be the only thing I'm looking for. Then when I tell them I'm not looking at surgery as an option they look at me like I sprouted 2 heads. And of course they have no idea what to tell me.

So far I have struck out with every dr. that my case manager has found for me. They all say the same thing. You aren't elegible for surgery so we can't help you at all.

There has to be help somewhere that I can get. I mean I dropped my daughter the other day because my arm was hurting so bad and my grasp was real weak. But it seams like every dr. I talk to says sorry it's happening but there isn't anything we can do. My back is so bad I can hardly move in the mornings. My unaffected hand hurts doing certain things that require fine motor skills probably cause I'm getting carpel tunnel or something due to using it exclusively. I'm so frustrated right now.

Sorry, just needed to vent.

How about talking to your case manager about seeing a "real BPI specialist"? Do you think you can make a case to see one of the doctors who specialize in bpi injuries? Try talking to the case manager and tell her/him that you MUST see a doctor who is trained and has the medical expertise to understand your injury.

Glad you came to vent... it is so frustrating to have doctor give you the run around because they do not have the courage to admit they don't know anything about obpi and the care of the adult/obpi.

Kath (robpi/adult)

I agree with Kath.
It really makes such a difference to find a doctor who truly knows this injury or at least is willing to find out more.

My primary care physician does not know that much -- I am his only patient with this injury, but he is completely willing to listen to me and to send me to a specialist as necessary. He does not belittle my complaints.

You seem to have found a good therapist. Perhaps your doctor will listen to what the therapist has to say about your situation, which is certainly being exacerbated by caring for twins.

Nancy

I have talked extensively to my case manager and she understand the need for me to see a specialist. The major problem is that my Insurance requires me to go "in house" if there is an acceptable substitute within the net work. She found 3 places that said (and this was after she talked to them about my condition) they could help. She was actually the one that encouraged me to call and ask more specific questions before making the trip out (the nearest one is 4 hours away). I actually have two more I have to talk to before I can appeal to go to Dr. Adelson who is the nearest specialist. Even then she was told that I have to see dr. adelson before he will refer me to the clinic he's director of. Which is going to be difficult as it's in Pittsburg which is also 4 hours away.

Luckly my pcp is great and has no qualms about sending me to a specialist. He wants me to have the best care and since he has no idea what to do he is all for sending me to whomever I can find that can help.

The other two places I have to check out are the University of Maryland and Thomas Jefferson University (where ever that is). Anyone know anything about these places?

"Kissygoose",... Thomas Jefferson Hospital is in Philadelphia PA.
Good luck on your "Journey along BPI Highway to Help".
Keep on keeping on.....
((((Hugs))) & Camp 2007 or Bust!,
Carolyn J