United Brachial Plexus Network, Inc.

Hi yall. I've had my BP injury since birth 45 years ago. I grew up not knowing what was wrong with my arm. Within the past couple of years I have seen a rheumatologist, orthopedic and neurologist for other conditions and the 3 of them all mentioned Erb's Palsy.

Now that I have had time to think about it, I have many questions. The most important I guess is what type of Dr do I see to investigate any options I have, and how much it is responsible for other neck and back problems. All I have found so far is pediatricians. There must be someone out there who treats adults.

Thanks!

Sunny,
I am not sure where you are from but I know that there is a team at Mayo Hospital in Minnesota that treat adults. I see a hand specialist from mayo, only I see him at Shriners until I am 21 then I will see him at Mayo. He has done so much research to help me. They are very willing to help.

I hope you are able to get some answers and treatment if necessary.
Good luck,
Amy 16 ROBPI from MN

There are very few BPI specialists who just see adults. I found my doctor on this website. He is a BPI secialist who is a pediatrician that sees adults with this injury as well. I like him. I live in pittsburgh but I have also heard of an adult clinic that treats brachial plexus injuries outside of philadelphia. Good luck.

I am about an hour drive from Boston. (I live in Rhode Island) If someone could recomend someone within maybe a 300 mile radius of Boston, or someone in Houston, Tx. (I am originally from Houston and plan to visit my Mom there this Spring.) I would be very greatful. I had a heartattack last March and missed all the symptoms because I mistook the pain for what I normally feel from my arm injury. That was my wake up call that 45 years of ignoring the injury is enough.

Thanks,
Sunny

Hi Sunny
Welcome to the Message Boards.

Here is a link to our Medical Resource Page
http://ubpn.org/medicalresources/

My big fear has always been that I could have the symptoms of a heart attack and not notice.
My mother was in her 30's when she had one and my dad 54 so I have it on both sides of my family.
Two of my brothers had bypass surgery at 58 and several of my cousins both male and females.
Now I guess I will pay more attention to signs.
I hope you are on the mend now and can find a doctor to help you with your pain and to gain some improvement.
I have had PT on and off for the last 6 years and it has helped with the pain and ROM.

I hope this helps you to find a doctor.

Kath robpi/adult

Hello Sunny,
I'd like to add my welcome to you. This is a GREAT place to learn from each other, adults with OBPI, but also I learn a tremendous ammount of stuff from parents too, on the General Message Board. Also this is a Godsend place to vent on everything and there are NO dumb questions. The most helpful I learn every time I come to UBPN is that this is a LIFETIME care
Injury and to be vigilant of every body change/pain that comes up and too take very good care of myself 1st.I'm glad you found our UBPN Family.
Hugs,
Carolyn

Thanks everyone for the welcome and the info. There is a Dr on the list that looks promising. I intend to contact his office and see what we can arrange. I'm also an insulin dependant diabetic and having the use of only one hand makes injecting difficult and cuts the areas I can inject in half because I can't reach well.

I hope I don't sound too whiney. I am very excited to find others with my problem. I truly thought I was a lone wolf. And yall all seem so nice too! I feel like I have so much to say and don't even know where to begin.

Thanks again,
Sunny

Let me add my welcome too, Sunny. And by all means, go ahead and whine if that's what you call it. I cried for hours when I first found this board. Couln't beleive there were others out there. I grew up not knowing about my injury also, as you I just thought I was a riggt hand dominant. When I did find out it was a birth injury I really didn't think it would have a name. I was in my 40's before I heard the words erbs palsy. I also sat for hours just reading the old posts and still crying, but now there are quite a few old posts out there. I won't go into all my problems, but I hope you can find a dr and get, at least, some releif. I will say that I noticed myself going downhill about the age of 30 which seems to match up with most of the adults here.

Like Kath, I have always wondered, if I should have a heart attack, would I even realize it. Again, welcome. I don't post as often as I used to or should I say as often as I should LOL
Sharon
Michigan

Hi Sharon
Glad to see you.
It's funny how we all had the same reaction to finding others with our injury.
I was so emotional and cried but then there were only about 4 people posting.
I always knew it was Erb's Palsy and the doctor made a mistake.
But I was still alone and thought is was so rare.
Hmmm but it's not and that is sad.

Sunny you are not whining.
You have finally found a place to talk about your arm and the impact it has had on your life with people who truly understand.
This is the adult/obpi board and the place for you to come for support, vent, get information and whine if it is one of "those weeks, days".
People on this board share many of the same frustrations and secondary problems.
Each injury heals differently and it's impact on lives and our experience is a bit different.
But, we all share many common issues both physical and emotional.
Ask away any questions or vent if that is what you need to do ...

My first silly question was about holding things in may hand and not realizing it was there.
I sometimes walked around doing odd jobs with something in my hand and never realized I was holding it.
I can't tell you how many times I have looked for something and it's in my right hand.
I have gotten to my car and realized I had stuff tucked under my arm and things in my hand... LOL..

Kath (robpi/adult)

Welcome to the board Sunny.
About holding things in your hand.....I went to the mall and was getting ready to leave ,but could not find my keys, I took everything out of my purse and looked. I started to panic a little then I looked down in my right hand and the keys had been there all the time. I need to start reminding myself to look there first. LOL