hello
hello
Hello,
I really don't know what to say. I'm 31 and I've had brachial plexus palsy since birth. My right arm started off as a dish towel and then I had surgery when I was really young.
I don't know what age or what the surgery was called. My mom had all that information and she passed away a year ago and my dad is terrible with details.
Anyway, they moved muscle from the front of my shoulder to the back and I have no idea what they did with the back muscle, but from what I can tell they didn't move it to the front, because if I ever became a body builder, I get the feeling I'm going to have lop sided pecks.
I can lift my arm about shoulder high, but I can't straighten it or turn my wrist and I have very little dexterity in my fingers.
I've been working for a school for the passed nine years, carrying tables and chairs, throwing large bags of garbage into the dumpster; mostly manual work. I've noticed that the passed couple of years its getting harder. My back is starting to hurt more, my good arm is starting to ware out faster.
It had never occurred to me before that I could blow my good arm out, but now I'm afraid I'm on the road to do just that.
I guess I'm not really asking anything, just want to talk to someone that can I can have a conversation with about it that doesn't end with, "yea that sucks," and then changes the subject. Frankly, I've never met another person with the problem, so I guess its hard for some one else to relate.
I really don't know what to say. I'm 31 and I've had brachial plexus palsy since birth. My right arm started off as a dish towel and then I had surgery when I was really young.
I don't know what age or what the surgery was called. My mom had all that information and she passed away a year ago and my dad is terrible with details.
Anyway, they moved muscle from the front of my shoulder to the back and I have no idea what they did with the back muscle, but from what I can tell they didn't move it to the front, because if I ever became a body builder, I get the feeling I'm going to have lop sided pecks.
I can lift my arm about shoulder high, but I can't straighten it or turn my wrist and I have very little dexterity in my fingers.
I've been working for a school for the passed nine years, carrying tables and chairs, throwing large bags of garbage into the dumpster; mostly manual work. I've noticed that the passed couple of years its getting harder. My back is starting to hurt more, my good arm is starting to ware out faster.
It had never occurred to me before that I could blow my good arm out, but now I'm afraid I'm on the road to do just that.
I guess I'm not really asking anything, just want to talk to someone that can I can have a conversation with about it that doesn't end with, "yea that sucks," and then changes the subject. Frankly, I've never met another person with the problem, so I guess its hard for some one else to relate.
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jmar
- Posts: 528
- Joined: Tue Aug 10, 2010 3:43 pm
- Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
Re: hello
oh there are a lot of people on here that can relate to you. i had a prachial plexus stretch during surgery a year ago. i have been through severe torment for the past year. 21 years ago, i had 2nd and 3rd degree burns down about 50% of both of my legs, and about 40% of my right forearm. since i am right handed, i became left handed for 4 months. for about 20 years i said it would have to be something pretty extreme to be worse than what i went through with those burns. NOTHING could be worse...well i have a very little scarring and a lot of discolored skin. i have no other issues with the burns. now comes along this prachial plexus injury. i wish i would have gotten burned again instead of this. i was burned with hot oil, so i know what it feels like. my hand and arm felt like i was soaking it in hot oil for several months after this BPI. my left hand now has very little function. i am beginning to overuse my right arm. i have to be very careful because my right arm is not that great either. so be careful and take really good care of your good arm. it is precious cargo. and worth its weight in gold. so take care of it and dont lose it too.
Re: hello
Getting burned just sounds absolutely terrible. I've had the BPP all my life and have no idea what it's like to have two working arms, so the thought of getting burned versus BPP I'll just take the BPP, since I don't know what I've lost. 
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: hello
Welcome Erkik! I am glad you found our UBPN Family. Check out the Link to UBPN CAMPS for pictures of us all having fun and networking, supporting and informing all of us. Our next Family Camp is in July 2012.
As an adult who didn't know to take care of my "good" arm & hand so I won't lose use of that too, I only started getting correct information and taking care of myself at age 66 in 2004 when I found UBPN. Keep reading and there is no such thing as a dumb question except the one that is not asked or answered.
Carolyn J
LOBPI/73 ...& still learning!
As an adult who didn't know to take care of my "good" arm & hand so I won't lose use of that too, I only started getting correct information and taking care of myself at age 66 in 2004 when I found UBPN. Keep reading and there is no such thing as a dumb question except the one that is not asked or answered.
Carolyn J
LOBPI/73 ...& still learning!
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Jennifer P
- Posts: 220
- Joined: Wed Sep 09, 2009 7:12 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
- Location: Pacific Northwest
Re: hello
welcome to the forum!
one approach would be to look for ways to lighten the load, like with the use of a dolly or other contraption with wheels for moving tables, chairs and such around.
one approach would be to look for ways to lighten the load, like with the use of a dolly or other contraption with wheels for moving tables, chairs and such around.
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karategirl1kyu
- Posts: 363
- Joined: Mon Feb 19, 2007 12:59 am
- Injury Description, Date, extent, surgical intervention etc: LOBPI, had surgery when I was 9- they moved muscles and tendons from one side of my arm to the other side. I can lift my arm to about my eye level, can't straigten it all the way and can't completely supinate my wrist.
- Location: Richmond, RI
Re: hello
welcome to the boards!! its nice to meet you!! overuse is definitely something to be careful of....
~Mel/23/LOBPI
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- 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
- Location: Minnesota
- Contact:
Re: hello
You sound like me! Only, I am 24 years old and have abused my left "good" arm my whole life. I am paying the price for that now let me tell you! My left arm wears out quite quickly these days. I also have tennis elbow and golfers elbows (medically termed medial and lateral epicondylitis)
The biggest thing is try to remember to break up the heaviest work over a period of time and try not to push through the pain, it will only cause more pain and more intense pain!
THats all I have time for right now, my baby needs some attention...I am somewhat sporatic on here right now, I have a two month old little boy but if you want to chat or need some advice, I have had 5 surgeries and tons of therapy. Feel free to email me anytime, hope16_05@hotmail.com
Amy 24 years old right obstetrical brachial plexus injury, from MN
The biggest thing is try to remember to break up the heaviest work over a period of time and try not to push through the pain, it will only cause more pain and more intense pain!
THats all I have time for right now, my baby needs some attention...I am somewhat sporatic on here right now, I have a two month old little boy but if you want to chat or need some advice, I have had 5 surgeries and tons of therapy. Feel free to email me anytime, hope16_05@hotmail.com
Amy 24 years old right obstetrical brachial plexus injury, from MN
Amy 28 years old ROBPI from MN
Re: hello
Wow, five surgeries! If you don't mind me asking, but what were the surgeries for?
I've only had the one and I'm not even aware if there is anything else that can be done and I've had just about no therapy. Feeling like a slouch here.
But seriously, I have no idea what kind of treatment is available now. I asked my doctor the other day about it and he just told me he hasn't read anything about it and pretty much just blew it off. *shrugs*
I've only had the one and I'm not even aware if there is anything else that can be done and I've had just about no therapy. Feeling like a slouch here.
But seriously, I have no idea what kind of treatment is available now. I asked my doctor the other day about it and he just told me he hasn't read anything about it and pretty much just blew it off. *shrugs*
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: hello
Hi and Welcome to our exclusive club.
It's called the medically neglected adult/obpi club.
It is not unusual for doctors to shrug their shoulders as if it's no big deal.
They are not educated as to the true nature of our injuries. For years they assumed it went away. There have been no long term studies on this injury and how it affects our entire bodies. They do not understand that there is more then just and arm injured.
You must find yourself a bpi specialist. Look at the resource directory on this website.
Educate yourself on this injury before you go to a doctor to ask questions. Before your know it .,.. you will know more about it they they do.
I don't mean to be down on the medical professionals... It was a matter of their education most doctors were not taught about the long term problems that plague us. That is because no one studied us or tried to understand all of the damage that was inflicted during our birth.
Glad you found UBPN while you are so young. Now you have people who understand.
It's called the medically neglected adult/obpi club.
It is not unusual for doctors to shrug their shoulders as if it's no big deal.
They are not educated as to the true nature of our injuries. For years they assumed it went away. There have been no long term studies on this injury and how it affects our entire bodies. They do not understand that there is more then just and arm injured.
You must find yourself a bpi specialist. Look at the resource directory on this website.
Educate yourself on this injury before you go to a doctor to ask questions. Before your know it .,.. you will know more about it they they do.
I don't mean to be down on the medical professionals... It was a matter of their education most doctors were not taught about the long term problems that plague us. That is because no one studied us or tried to understand all of the damage that was inflicted during our birth.
Glad you found UBPN while you are so young. Now you have people who understand.
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
