United Brachial Plexus Network, Inc.

Hi everyone,
I wondered if anyone encountered this. After being discharged from neurosurgery since not much else could be done, we were told to have orthopedics monitor things. Problem is that no orthopedist is willing to take on a complex brachial plexus injury. I even have tried having her pediatrician do all the calling but to no avail. I thought physicians could not refuse service for a disability - but perhaps I have this wrong. What does everyone else do? Do your internists just manage your health or perhaps just PT,OT? Does anyone see an orthopedist for maintenance of their shoulder joint??

I had kind of the same problem. I had to find doctors that specialized in brachial plexus injuries. My primary care physician wanted nothing to do with it. Thankfully I live close to John Hopkins and found doctors there. You should try finding a specialist where you live. I think doctors can refuse care but hospitals can't refuse emergency care. I know my post probably didn't help a whole lot. At least you know your not alone in having trouble finding care.

When I was 1st injured the hospital really didn't offer any suggestions on what to do.
My wife at the time luckily did research and found the Mayo Clinic.
My plastic surgeon was insulted that I consulted and eventually had them perform a complete BP reconstruction.
Since I live in the Northeast US, my orthopedic doctor said "lucky me" when I asked him to follow me. And the plastic surgeon had a bit of an attitude as well.
Again, I don't think this helps but you're certainly not alone.

Trying to do this is really tough to do to find help,I guess doctors just dont KNOW a doctor to refer you to
If you need a doctors name call the nearest Children hospital and contact the head of the Dept. you need or I know have your currant doctor do this contact Hopefully you can get a referral to a Children Hospital and a doctor there There is alot of way this goes , Post as a new topic for parents to see. They find name of doctors to by Quest and post
In 1950 my mom took me to Chicago Children Hospital and saw a few doctors there , so this really should be some sort of way to move forward ??:roll:In 1950 there end up with no help treatment , nothing, just live with it kid Thing have change a lot with treatment and surgeries , But finding the right doctor??
It really is a life long quest to find the right doctor to see at any age but I think no matter when you were injuries contacting a Children hospital is a good start
Hope this helps,????????? try this and post back
We all try to help maybe it can help ????? , but sometimes support is all we can offer each post we can hope to help or some time experience is all we can offer
Tom

Thanks for your help. We have been to Mayo and because of my daughter's vascular injuries they are reluctant to do any more muscle transfers. She does not want an amputation at this point. We just wanted a regular shoulder orthopedist to keep track of her chronic subluxation but none will see her. Mayo does not want to see her either . There is a children's hospital in buffalo that I will try. Honestly I do not expect the new doc to fix things. We just want to maintain and keep what she does have strong. It seems from the replies people are only going to brachial plexus centers. But what do you do if they stop wanting to see you too?

I never had treatment for my birth erbs,
My shoulder at scapula and elbow were broke at birth to.
Please call the other hospital , Maybe a blood flow doctor might help ???? My erbs arm and hand goes from bright red in the summer and to purple in winter driving semis
There is something in scare tissue and veins with blood flow and the pain from pins/ needles felling like your hand is going to sleep ???? To me checking the blood flow in these injuries might help to?? To late for me :shock

I read alot of post, seems to learn that a number of doctors dont give out referrals But then some doctors do
That cause this quest for parents or for others later in life injuries to see the right doctor.
Because my scapula was broken at birth my shoulder permit separated for life.OUCH
I really think it is a scar tissue and blood flow issue and scare tissue on nerves stretch in these injuries ?? Life time of it
I think seeing a doctor who treats these issue may help more???? I have read post from birth injuries and later in life share the color change and pins and needles and alot of same thing dealing with pain. I really believe seeing a vascular doctor might help by a share experience by other post here to???????:shock:
Sorry your in this quest , but you are in good company by so many here
Hope this might help???
Tom

Hello eweinstein. I'm a patient of the Mayo Clinic and I cannot image them leaving you that way. I was referred by the Mayo Clinic for local post-surgical care to a very competent surgeon so I did not have to travel the long distance back to Rochester. My local orthopedic does all the periodic visits, wound care, physical therapy orders, prescription orders, etc. Have you tried asking the Mayo doctors point blank if they can refer a local physician? They have many colleagues throughout the states and around the world. Good luck and I truly hope that you find a local physician to put your trust in.