Hey everyone!
I am another newbie on the site, and am excited about it. I have a couple questions so i will give a little bio too. I am 24 with a right arm OBPI. I have never had any treatment for it except random PT here and there, but they never knew what to do. I have always been used to the lack of movement/strange movement. It never bothered me much until high school when all the pain started. They say it is just the arthritis kicking in and that that was the pain. Well, its been about 8 years of that, and I am just interested to know if I have any options other than pain meds...
I am fine with the lack of motion, but I don't want to lose what I do have. I catch myself holding it a lot and not using it as much as I used to, and that scares me. And of course I don't want the pain to get worse.
Does anybody have any advice or experience they have had with adults having surgeries or anything? What is the recovery like?
Anything would be great, and I look forward to getting to know some of you through this forum!
Thanks,
Andrea, 24 OBPI
Another Newbee
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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: Another Newbee
Welcome Andrea
I am sure you are full of questions and it's important for you to know there are no silly questions here.
We have all found answers to questions no one else had the answers to over the years. When we share information here we support others and gain a great deal of insight into the many different ways this injury affects or body.
Kath robpi/adult
I am sure you are full of questions and it's important for you to know there are no silly questions here.
We have all found answers to questions no one else had the answers to over the years. When we share information here we support others and gain a great deal of insight into the many different ways this injury affects or body.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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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: Another Newbee
WELCOME, Andrea!!
YES, a few adults have had surgeries as adults and have had differing results. I hope they aren't too busy to let you know about their surgeries.
I only found UBPN and a name, Erb's Palsy, & that I wasn't the "only one" with this "rare injury" 4 years ago when I was 66. I am happy you found us in your 20's. Yes, pain issues are a very big issue as we age. I have found warm water pool mildexercise and streches in the water have helped me alot. Others have found pain relief in hot tubs,Chiropractor "Activator" therapy and Massages[but only someone who knows about BPI's and listens to you when you tell them "it hurts there too much".] I have yet to have a massage myself 'cause no one in my town seems to work with adults with OBPI's, just children, & I don't want more pain to deal with.
FYI, if you type "Pain Issues" or any other word in the Search Forum link at the top of any page, all of the posts on that subject will come up for you.
Fill free to ask any question on any of the Message Forums too. I learn sooo much from Moms on the General Board.
Carolyn J
LOBPI/70
YES, a few adults have had surgeries as adults and have had differing results. I hope they aren't too busy to let you know about their surgeries.
I only found UBPN and a name, Erb's Palsy, & that I wasn't the "only one" with this "rare injury" 4 years ago when I was 66. I am happy you found us in your 20's. Yes, pain issues are a very big issue as we age. I have found warm water pool mildexercise and streches in the water have helped me alot. Others have found pain relief in hot tubs,Chiropractor "Activator" therapy and Massages[but only someone who knows about BPI's and listens to you when you tell them "it hurts there too much".] I have yet to have a massage myself 'cause no one in my town seems to work with adults with OBPI's, just children, & I don't want more pain to deal with.
FYI, if you type "Pain Issues" or any other word in the Search Forum link at the top of any page, all of the posts on that subject will come up for you.
Fill free to ask any question on any of the Message Forums too. I learn sooo much from Moms on the General Board.
Carolyn J
LOBPI/70
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Another Newbee
Welcome Andrea
As you've heard there are NO silly questions here !! I found this board around 1999 I think??? It's been awhile anyway and I have found a wealth of information and some TRULY LOVING LIFELONG FRIENDSHIPS !!!
What you REALLY have to pay attention to as we age is what we oldies are going through right now. Over Use and Over Compensating with our "good arms" which leads to many other issues the older we get.
So take care of yourselfnow as much and as often as you can, it will benefit you in later years.
Again, welcome Tina BiOBPI
As you've heard there are NO silly questions here !! I found this board around 1999 I think??? It's been awhile anyway and I have found a wealth of information and some TRULY LOVING LIFELONG FRIENDSHIPS !!!
What you REALLY have to pay attention to as we age is what we oldies are going through right now. Over Use and Over Compensating with our "good arms" which leads to many other issues the older we get.
So take care of yourselfnow as much and as often as you can, it will benefit you in later years.
Again, welcome Tina BiOBPI
Re: Another Newbee
Thanks for your responses! I have spent a lot of time these past few days scanning through the MANY very informative topics on this forum.
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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: Another Newbee
Hi Andrea!
Just thought I would chime in a quick note tonight. I am not sure where your pain is but it might be able to be dealt with. I also started having pain in school that continued to worsen through my first two years of college and then my doctor found me an option. I had a pec tyransfer last May to stabalize my scapula and that worked amazing to resolve my pain. You can read more about in on my website in my journal www.freewebs.com/bpimn
I would post more about surgery tonight but the college computers hurt my good arm. I will try to post more later this week on other possible solutions but if you read my journal you will read about every thing I have tried in the last 4 years.
Hope your pain goes away!!!
Hugs,
Amy 21 years old ROBPI from MN
Just thought I would chime in a quick note tonight. I am not sure where your pain is but it might be able to be dealt with. I also started having pain in school that continued to worsen through my first two years of college and then my doctor found me an option. I had a pec tyransfer last May to stabalize my scapula and that worked amazing to resolve my pain. You can read more about in on my website in my journal www.freewebs.com/bpimn
I would post more about surgery tonight but the college computers hurt my good arm. I will try to post more later this week on other possible solutions but if you read my journal you will read about every thing I have tried in the last 4 years.
Hope your pain goes away!!!
Hugs,
Amy 21 years old ROBPI from MN
Amy 28 years old ROBPI from MN
Re: Another Newbee
Amy,
Thanks for the comment and the link. You have done a great job on that site. What exactly is a Pec-transfer. I would like to bring it up to my doctor just to see if he knows anything about it when I go for my first visit with him.
I don't think my case is as severe as yours and many others, but if there is a chance that could help ease the pain and perhaps stop some more atrophy, that would be fantastic.
I met with Dr. Nath at one of his clinics this spring, but the only thing he really talked about were the Mod Quad and one other bone surgery, but I just want to cover all my options before committing to something to serious as a surgery.
Thanks for your help!
Thanks for the comment and the link. You have done a great job on that site. What exactly is a Pec-transfer. I would like to bring it up to my doctor just to see if he knows anything about it when I go for my first visit with him.
I don't think my case is as severe as yours and many others, but if there is a chance that could help ease the pain and perhaps stop some more atrophy, that would be fantastic.
I met with Dr. Nath at one of his clinics this spring, but the only thing he really talked about were the Mod Quad and one other bone surgery, but I just want to cover all my options before committing to something to serious as a surgery.
Thanks for your help!