United Brachial Plexus Network, Inc.

Hello everyone,

I am so glad I found this forum and am most likely going to spend a lot of time here reading all your messages.
So, I am a 19-year-old girl with OBPI, and the injury is quite serious, but not the worst type, thank god. So, I would just like to ask you people a couple of questions: is there actually a cure for this? Is there a doctor somewhere in the world who can make an operation to make my arm normal, or at least better? Maybe it is a silly question, I don't know, but I hear so many stories from America and it seems like anything is possible there. It is told that the health care here in Finland is one of the best in the world (which I highly doubt, as the doctor who delivered me was drunk like a pig - that's why my arm is what it is!) Yes, I am bitter and I admit it! Who wouldn't be?
So, has anyone had an operation that changed their lives?

Anyway, like I said, it's so nice I found this forum, the info and chatting on OBPI is extremely limited in Finnish, and this is the first time I thought there'd probably be people with the same problem in other countries too...! How smart of me

p.s. Sorry for my English, I absolutely don't know it that well at all, especially words about medicine...

HI,
Welcome to the message board! Glad that you have found us.
To answer your questions.. no, there is no cure, once a nerve is damaged it is damaged. There is *some* healing that takes place if the nerve is only stretched, but even then depending on how damaged it is it may not heal at all.
http://ubpn.org/ubpnweb.nsf/web/information.html
There are surgeries that can be done to try to improve function. Tendon and muscle transfers can be done to gain movement, even nerve grafts that are done on babies and newly injured BPI (from trauma, not birth)

Many of us here have had surgeries that have helped us. I had a tendon transfer at age 14 to gain external rotation.

Again, glad that you are here... and remember to feel free to post any and all questions, there are NO dumb quetsions! (Beat ya to it Carolyn!)

Marieke (31, LOBPI)

By the way.. your English is very good!!!

and, LOBPI means Left OBPI, ROBPI means Right... TBPI mean Traumatic (like from a car accident..)


Message was edited by: marieke

Thank you very much for your answer, marieke.
So, there seems to be nothing else to be done for it, indeed. I was offered a chance for an operation at the age of 11, but they said the improvement would be very small and there were some risks as well, so I refused.

So, I guess I have no other choice but to live with it. Lately, I haven't been thinking of it much, as my life has been a lot happier (lovely fiance, good school - no bullying), but a summer job interview really let me down when they told me they don't want a disabled employee. I got so angry.
Has people had similar experiences when looking for a job?

I wouldn't give up so quickly. It's been eight years since you turned down that surgery, and you are still young enough to benefit from any advances (that might have been made in those eight years) which could help you.

Joanie, LOBPI, 58 years

WELCOME EMY-LIA!!, to the UBPN Family.
There is alot of information here. And, yes, as Marieke said, please ask any question!

Hugs al around,
Carolyn J
LOBPI/69

Thank you all for your answers. It's so great to see there are people like me

I was offered this chance at the age of 11, like I said. So I don't know if it would be for free anymore, once I have refused? I am a student, so I can't pay. Anyway, you probably wouldn't know, as things work so differently in each country, I will have to ask my doctor.

Welcome! I am so happy you found us.
You can ask any question you want and never feel that any question is foolish or silly.

It was by asking silly questions we discovered so many things we do differently is because we are obpi.

I am happy you found us.
A few year ago the mother of an OBPI child came to New York and stayed at my home before going to a meeting.

Ask away and never give up hope, medicine had made great advances in the last few years.

Kath robpi/adult
UBPN BOD Member

Hi Emy-lia!
So glad you found this group!!! I am Amy and I am 20 years old with a ROBPI. I just had surgery not quite 6 weeks ago to improve function and decrease pain. So far so good, I dont have any of the pain that I had before surgery and my function is coming back pretty quickly!
just today I was able to get my hand to my mouth again!!! And I just got out of my splint June 26th and started therapy again.
My guess is if you have insurance that will cover treatments you could benefit greatly from physical or occupational therapy. Check into what treatment options are available to you in Finland, I have heard that the medical care is great over there.

I guess you could say that my operations have changed my life, each one is something different, some work and some dont, thankfully my surgery that didnt work didnt cause me to lose any function either. I have now had 5 surgeries to improve my function and I have had great results! I can use my hand again and its awesome!

I am also a student so I know what you mean when you say you cant pay, I have medical bills coming out of my ears! not sure how I will pay them but I have the rest of my life to worry about that. For now I am going to college to become an occupational therapist.
I do think about my job outlook as I have had a similar situation to yours in that when I applied for a job at a grocery store the guy who interviewed me said he didnt think I could do the job and turned me away!

On the other hand my doctor who did my last two surgeries keeps asking me how much school I have left because he would like to see me working at the Mayo clinic when I get done (that is where I saw him last). So the options are out there for us we just have to find great employers who are not petty and unreasonable!

I hope that got most of your questions! If you have more feel free to ask! Or if you just want to chat thats cool too, you can email me if you like, hope16_05@hotmail.com Just put something in the subject that I will recognize so I dont delete the messege.

Amy 20 years old ROBPI from Minnesota

Welcome to the board Emy-lia. Glad that you found us.I am 46 robpi and have had one surgery later in life to help with numbness. I hope that you have read the resource section. It is full of info. My husband just got back from Finland last week. He said it was a pretty place but the weather was cold and rainy. He actually went in 180 degree sauna and then jumped in a pool of ice water. I guess it was a way to welcome him to Finland? ......Judy