United Brachial Plexus Network, Inc.

Hi Becky,
I had the "Mod Quad" and did not have the great results that others had. All five of my nerves are damaged unlike some of the other adults. Do your homework first

Mel
I have c5,6,7,8 & T1 - I always had problems with breathing and my diaphragm. Of course now I know it's from c4.
The pulmonologist said that my sleep problems probably stem from a lack of oxygen and muscle fatigue.
He said it was like post polio syndrome but there are no studies on bpi to back this up.

I was never offered any surgery,probably because of my age, it was too late for any type of gains for me.

Your so young, I'm sorry it did not work out for you.
Nice meeting you at camp
Kath

I don't need surgery. My arm functions very well considering. I can lify my arm right arm(affected side) above my head. I have good strentgh and can do most things. I was just exicted that those who had more severe disability could gain some function.
becky

Hi Kath,

If I may ask you...had you or your parents (when you were an infant) been offered surgical intervention, do you think you would have taken the offer or wish your parents had? I'm only asking because my 14 month old daughter has ROBPI and she is being offered surgical intervention and I'm not sure what to do for her. Obviously she can't decide for herself at this age so its up to me. I'm trying to also consider this from an adult with ROBPI's point of view. Thanks. Sorry for prying. Kristin

Kristin

My mother was offered some type of surgery but I am 65 years old and it was so risky for an infant.

Not a very good survival rate for any surgery on infants then.

I don't know what I would do if I were the parent. Sometimes we have to make very hard decisions for our children and then pray and hope we make the right one.

I feel my parents made the best choice at that time with the therapy and care I received.
They started ROM at 2 weeks old.
We were lucky to live in an area with many of the large medical institutions so they were able to get many opinions in just a months time.

Today there are so many options offered for the children and I have seen with my own eyes changes in function for many children that I feel are remarkable.

If it were me I would see at least 3 bpi specialists and ask lots of questions.
Keep notes on their opinions and try to choose the one who offers the options that I would feel comfortable with.
Communication between doctor and parents is very important.

Kath ( adult/robpi 65)

Hi!
I justwant to let you know about my surgery. I too am 25 and have a right BPI.
I went to several doctors before I found out that because my shoulder socket did not develop properly, and the way it did develope meant surgeries like the mod quad were out for me. I was told to focus on my hand.
So I saw a great surgeon named Dr. Harrop. He transfered a tendon from my lower arm into my hand and it's four fingers. I was in splint about 2 1/2 months. But now I have a lot more movement. It even turned out better than we expected.
erica

Hi,

I'm new to this site...just barely realized there were other people out there with this same injury. I am 25 years old and have had a right BPI since birth. I'm scheduled to have surgery with Dr. Nath in January. I have a lot of pain in my neck and shoulder and I was wondering if you also had pain..and if surgery helped with that.