I have ROBPI. I'm 39. I have great hand control(can almost rotate it all the way).
I can lift my arm over my head. The only things I can not do are extend my arm or rotate it. Yes, so that makes my arm 3inches shorter than the other.
I have had pain off and on for about six month. Massage and heat usually take care of it. (usually I'm lifting too heavy of a weight or doing too many reps) Yes, I know stupid.
So, as you can see I am doing pretty well.
My question is....
Several of ya'll talk about surgrey. Can you tell why you do it and what the benefits are for you?
PS: I broke down and cried when I found this site. In my life I have only known one other person with BPI (a child). This is toooooooo cool!
Thanks bunches! Nancy Ann
Injury Description, Date, extent, surgical intervention etc: LOBPI no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth 1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
I did it because I wanted external rotation, more freedom of movement and a more "normal" appearance to how my arm hung. I too have great function, both before and after.
I CHOSE surgery, it was not something forced on me or something I had to do. I wanted to try to get the most out of my arm.
Benefits for me, were not only physical, but psychological and social.. I gained more confidence in myself and was more open to talk to my peers. Yes, I gained movement but I also gained what I consider a better life, physically, psychologically, and socially!
Hello, I am Rachel 35 with LOBPI. I choose to have surgery because my arm after many years started to atrophy. (shrink) and it was also paralyzing itself. The pain was quite unbearable and it would go numb. My arm too was three inches shorter than the other one and was really starting to extend on my neck more.
Since my surgery I have a lot more movement in my fingers, my arm is now only about a 1/2 inch difference in length and with stretching etc. it is overall so much better. I still have the pain from overcompensating when I do weight work etc. or heavy lifting but it honestly is a lot better.
I do always mention that not every persons injury is the same. And surgery is an option that only you can decide upon if the doctor feels it will help you out.
I too cried when I found this website due to it is such an overwhelming emotional issue; especially when I thought forever I was the only person in the world with a short arm. *L*
UBPN is such a wealth of information from all who post and it truly gives you a sense of well being espeically during those times when you really need it. Arm related or not. People in here truly care.
You should try to make it to camp this year or the next two years. I almost didn't get to go this year, but in the end I am going and I always look forward to seeing everyone and helping out if I can.
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
I am 20 years old and recently chose to have my 5th surgery. I have been able to make the decision for all 5 of my surgeries and why I did that was in my opinion I really didnt have much to lose. My arm didnt work well before the surgeries. The last one though, only 12 weeks ago the risks were there and I could have lost a lot had the surgery not been a complete success! I chose to have this most recent surgery because my pain was interfering with my life and I simply could not deal with it with out trying something more permanent to fix the pain. It was distracting during class and my grades were suffering. My social life was also suffering as when I was hurting I didnt feel like hanging out with my friends.
This last surgery has been a miracle for me!!! I can not believe how much I have gained from this surgery. I would do it again in a heart beat if I had to.
Then final surgery I might have the pros will definitely have to out weigh the cons. I am still very up in the air. Mostly you will just know when talking to your doctor if you have a good option or not. The the pros outweigh the cons? If you are happy with the function that you have live life and be happy. If you are in pain and its not going away talk to a doctor and see if you have any options.
Good luck and again welcome to the group!
Hugs,
AAmy 20 years old ROBPI from MN
Wow! Thank you Marieke, Rachel. and Amy!
Can ya'll please answer some more questions?
1. What is this surgrey called? How do you ask a doctor about it? Where should I begin?
2. Do I just wait for my arm to get worse? Do MOST BPI related problems get worse with age? I've never meet anyone with BPI older than me.
3. I don't understand how the surgrey "fixed" your arm so that you can extend/stretch it out like your other arm. THAT WOULD BE AWESOME!
Sorry, I hope that's not too many.
Thanks bunches!
Nancy Ann
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
there is not really any one surgery you can ask for, it all depends on your issues. Check out my website, it has names and explanations off all 5 of my surgeries. www.freewebs.com/bpimn
find a bpi doc and tell them why you are there, pain goals... then ask them what they think will help you. My last surgery (pectoralis major transfer to the base of my scapula) took a couple years to come up with as an option for me for pain relief and easier movement. It really all depends on what your issues are.
To find a doctor check out the med resources page on here. It lists bpi docs from all over the place!
Is your elbow bent in a contracture? You might be able to gain some extension with splinting if you are willing to sleep with a splint every night. Ask your regular doctor for a refferal to OT and or PT That might be an easier option foe your issues. Then if that doesnt work check into surgeries.
Good luck Nancy Ann
Hugs,
Amy 20 years old ROBPI from MN
Injury Description, Date, extent, surgical intervention etc: LOBPI no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth 1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
For us in Canada surgery is "free", covered by medicare. Plus I had mine as a teenager at the Shriners which is always free of charge (but the Shriners only treat kids to age 18 or 21 depending on where it is).
