United Brachial Plexus Network, Inc.

Hi Sam
Glad you found us, if you have any questions ask away or if you need to vent we do that too. My name is Mare my son Frankie is 14 and has a lobpi from birth. I think we can learn as much from you as you can from us.
Again Welcome

Mare you beat me to it, I just came on to Welcome Sam.

So Welcome Sam! We are here so if you have any questions feel free to ask! THere are NO stupid questions!!!!Dont believe me? Look back at old posts and see some of the things we have figured out together.

I noticed you said you juts started getting pain, want to describe it more and maybe we can help.

Welcome to the group!
Amy 20 years old ROBPI from MN

Hi Sam,
welcome to the group!
Marieke, 32 LOBPI

Glad to see that Mare welcomed you Sam.

Most of us can tell you about our experience with pain in our twenties.
I'm glad you found us and ask any question you want.
We have asked questions and learned from each other over the years.

There are so many issues connected with bpi and ones we never realized that other obpi share with us.

So please, ask, vent and share with us and we will see what we can do to help you.

Kath robpi/adult

Hi again!!!

Thanks for such a warm welcome. I had been reading the site for a little while before I decided to post, don't really talk much about my arm outside my family. But you guys seem like a great source of information and support.

Well like I said my injury occurred at birth, i saw a doctor when I nine and that it until about a year ago when I started to experience pain. The pain I get is mainly in th front colar bone area of my shoulder and up my neck to my ear when its really bad. I was also experiencing bruising at the base of my neck but I haven't seen that in a little while. I also get pins and needles sensation down my whole right arm and numbness at times. less comman is a pain in my back that runs down my shoulder blade and sometimes there is also numbness involved there. My pain seems to be triggered by activites I do although this isn't always the case.

I have been told that some of the bones in my right shoulder have not developed correctly while others have over developed. Is this normal and inline with my injury???

I didn't know this had happened to so many other people until I found this site last week. So i'm sorry for talking so much.

Hi Sam
I'm sorry to hear about your pain, the tingling and numbness could be a compressed nerve Frankie had that. If you don't mind my asking how much function do you have??? Frankie has no use of his shoulder which causes muscles to tighten giving him stiff necks and headaches he would go to a chiropractor and the dr used the activator method its a tool I don't know how it works but it really helped. Never let then manually adjust your neck it can cause more pain or injury, Frankie can bend and straighten his elbow but due to a muscle imbalance it is permanently dislocated. His wrist is flaccid and non functional along with his hand and at times experiences a shocking pain in his wrist that makes him crazy, others with bpi get this usually during a growth spurt, getting sick or stress its weird and Dr's can't explain it. My best advice is find a bpi dr, there is a listing on the resource page that may have some where your at. Pt is also helpful they can show you stretches and do massage therapy that's what Frankie had done last night and now is pain free for awhile. I hope this helps Mare

Hello!!!

Yeah i go to physio when it sore and try not to do anything too out there to make it sore.

I have pretty good movement i can use my hand and wrist without too much hassle. I learnt the piano up until i was 17. i can't straighten my elbow and can only lift my arm chest height without helping it.

Hello Sam,
WELCOME to the UBPN Family. I was 65 yrs when I found this website AND a name for my injury for the very 1st time, so I know how you must feel. I had to set a timer when I started reading all the posts and information or I'd lose half the day.

BTW, there is a BPI Specialist in Australia, it's been awhile but I will try to find it and BUMP it up for you.
Also, Pain Specialist, Physitrist,(Sp??) may be helpful too. I found some pain/discomfort relief by sitting in a hot tub for 15 mins at a time and doing gentle stretches there in the hot water..it helps with tightness.

Keep coming back, we are here for you.

Carolyn J
LOBPI/69

Sam, the Topic of BPI Specialists in Australia was on the General Message Board and I Bumped it up for you there if you are interested. It's from 2005 but the information may still be good to check out.

Carolyn J