United Brachial Plexus Network, Inc.

I had a parent ask me a while back what kinds of secondary surgeries were around and honestly, I havent done that much researching on it for lack of time.

I thought I would ask here for all the adults to share their experiences, what surgery they have had and what it was for. Successful or not?

I think it will be interesting to see what the secondary surgeries are for the adult population.

I will start, at age 18 I had a zancolli procedure in my hand to improve hand function by taking away the ability to hyper extend my MP joint (knuckle).

At 20 I had a pectoralis major transfer into my scapula to relieve pain and increase function.
Both surgeries were 100% successful!

I have also had 3 other bpi surgeries before the age of 18. one at age 6, a zancolli in my hand and tendon transfers to give me finger extension--worked great! one at age 10, a lat dorsi transfer in hopes of active overhead ROM and that was not successful. And another at 12. That was a revision of my first tendon transfer to gain wrist extension and that has worked to some point.

Amy 20 years old ROBPI from MN

At age 14 I had a lat dorsi transfer to gain eternal rotation. Worked to some extent, but my shoulder joint is malformed and so stops some of the active movement I could have...

Marieke (32,LOBPI)

Amy
Do you want to include those who have had no surgery?
I realize the parents want to know about secondary surgeries but it would be interesting to see how many adults have had no surgery.

I've had no surgery and often wondered if there was something that could have helped.

Kath robpi/adult

Hi everyone,
I had a tendon transplant from my left BPI leg to my foot to enable flexing the foot ; before that the fot would turn on its side and lock at any time.
that was the only surgery/intervention I ever had.

HUGS all,
Carolyn J

Like "Kath" I haven't had any surgery or help in the matter until recently. I did 3 months of physical therapy that helped until recently when the pain started coming back fast and hard all over again.

Caiti, 23

Caiti
I never had surgery because of my age. My mother was afraid because many babies died under anesthesia.
I had a life time of PT. My mother was taught ROM and started that at 2 weeks old. I wore a brace for 11 month and it came off of ROM and Massage therapy.
After that every game I played was really PT. I did not realize how much of their time I took until I was a parent myself and things came so easy to my kids.
I was encouraged to do anything I put my mind to.
I was very lucky that the doctors they had were ahead of their time when it came to advice.

Unlike you and Carolyn I was always aware of what happened to me and how it happened. The only name my mother was given for this injury was Erb's Palsy. It was never a secret nor was I treated any different then my sibs. Actually, my mother gave me the words to answer the nosy questions that made me more comfortable.
I had limited information on this injury and we all thought it was rare because that is what we were told.
Perhaps your parents were told the same thing.
I'm the youngest in my family and my Mother did everything in her power so that I could move at all.

I searched for information for years and could not find it. My daughter was in college for her BSN and we went through her books to get information and found nothing but a shot paragraph in her Merc Manual. I assumed that the lack of information also meant that this was a rare injury. Then I found UBPN in 1999, when it was newly formed, I learned then that this is not a rare injury.
I think most parents had very limited information and advice on bpi.

Kath robpi/adult

Kath, I wish I had a mother like yours...and so many others here. Even PT as a child would have been beneficial. "hiding a problem" does not make it (or the child) disappear. All things to be worked out in due time. I hope to get to the 2009 camp and in the end, possibly get some beneficial surgery if it would actually help - otherwise more PT down the line when I can afford it.

Caiti
I still go to PT when I get myself into a mess.
I hope you can find some help. I know I was blessed to live where I lived and have a mother who gave me wings.

I'm sorry that you did not have that support. I hope that sometime in the future you can make some peace with the lack of care and information. It will help you to heal.

hugs
Kath robpi/adult

That's all I'm hoping for...to heal. I can tell as I read some of my posts that I come off as resentful at times or bitter. And thats very true in how I am.

Ah but I have faith in the medical community! So many of you are nurses! I know you will isnpire doctors to seek better and more effective surgeries! And someday when I'm old and grey - and sitting in my house I will have no pain. Someday

Hello everyone!

Our computer was in the shop for a few days, and after that, it still wasn't online for a couple more days. Now I'm trying to catch up.

I had my only surgery on my arm when I was in my early 20's. It was a tendon transfer to correct a droop wrist. Tendons that were pulling my wrist down towards my arm were moved so that they would pull my wrist straight. Now my wrist hangs straight, but my elbow is still bent.

Joanie, LOBPI