Just found out what I have.
Just found out what I have.
My name is Brandy and I'm 23 years old. I just researched and found out that I have obpi. When I was born, my mother said that they should have performed a c-section on her but the doctor used forceps and forced me out. I have had problems with my left arm all my life, but never went to a doctor or anything, or even tried to find out if there was a name for it. I cannot straighten my arm; have several dead spots on my skin; cannot fully rotate my wrist; and cannot lift my arm over my head. It is such a wonderful feeling to find out that there are more people out there like me. I have never seen anyone else with these problems so I never tried to find out what it was. I will definitely be coming back here now that I've found you guys!
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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: Just found out what I have.
Welcome Brandy
It is so amazing when we find out we are not the only ones with this injury.
I am glad you found us. I was 60 when I found this form and it has helped me so much to talk to others who share this injury.
Kathleen
It is so amazing when we find out we are not the only ones with this injury.
I am glad you found us. I was 60 when I found this form and it has helped me so much to talk to others who share this injury.
Kathleen
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Just found out what I have.
Welcome Brandy.
We are glad you found us!
There is a lot of information on the website that you will want to explore, esp. in the Awareness section. If you will click on Home in the task bar above this page, you will find links for Awareness information.
Also if you would like to receive some back issues of Outreach (our magazine/newsletter), send me (nancy@ubpn.org) your mailing address and I'll send you some and add you to the mailing list. There is no charge to receive our publications. They are full of articles written by medical professionals and by people sharing their life situations like you and me.
I also am obpi. I am 50 years old and met my first adult with the injury when I met Kath (who posted in the post above mine) about 4 years ago. It is wonderful to know that there are others who understand your unique situation and with whom you can talk about similar issues.
If you read through this message board, you will find that we ask each other lots of questions, both mundane and serious. I hope you will find this place to be place of support and learning for you.
Nancy Birk
UBPN President
We are glad you found us!
There is a lot of information on the website that you will want to explore, esp. in the Awareness section. If you will click on Home in the task bar above this page, you will find links for Awareness information.
Also if you would like to receive some back issues of Outreach (our magazine/newsletter), send me (nancy@ubpn.org) your mailing address and I'll send you some and add you to the mailing list. There is no charge to receive our publications. They are full of articles written by medical professionals and by people sharing their life situations like you and me.
I also am obpi. I am 50 years old and met my first adult with the injury when I met Kath (who posted in the post above mine) about 4 years ago. It is wonderful to know that there are others who understand your unique situation and with whom you can talk about similar issues.
If you read through this message board, you will find that we ask each other lots of questions, both mundane and serious. I hope you will find this place to be place of support and learning for you.
Nancy Birk
UBPN President
Re: Just found out what I have.
Brandy:
Seems like the OBPI veterans are the first to respond but you've probably have already discovered that there are people of all age groups active in the forums. I'll turn 65 in July so I've lived with this injury for a long time. Your injury sounds a lot like mine. I have about 10 degrees of internal rotation in my wrist, can raise my arm to about head level, have about 75% bicep strength compared the "good" left arm, and reasonably good finger flex and grip.
Like Nancy, the first BPI person I met was Kathleen. We met at the UBPN Camp 2003 last August. Camp was a very special time for me because I met injured adults, teenagers, and children. I also learned about medical procedures available now that were impossible when I was a child. Too late for me but something a younger person like yourself should explore and consider.
John P.
Seems like the OBPI veterans are the first to respond but you've probably have already discovered that there are people of all age groups active in the forums. I'll turn 65 in July so I've lived with this injury for a long time. Your injury sounds a lot like mine. I have about 10 degrees of internal rotation in my wrist, can raise my arm to about head level, have about 75% bicep strength compared the "good" left arm, and reasonably good finger flex and grip.
Like Nancy, the first BPI person I met was Kathleen. We met at the UBPN Camp 2003 last August. Camp was a very special time for me because I met injured adults, teenagers, and children. I also learned about medical procedures available now that were impossible when I was a child. Too late for me but something a younger person like yourself should explore and consider.
John P.
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rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: Just found out what I have.
Brandy, we are so glad you found us here. I am 32 and like yourself I thought I was the only one in the entire world with this problem as well. I just had surgery in Sept. 2003 and am recovering quite well. Where are you from? Have you looked into any surgeries at all yet? I'm sure you are very overwhelmed with information already. If you have any questions please feel free to ask. Best of luck to you.
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Just found out what I have.
I am from Gadsden, Alabama. A pretty small town in Northeast Alabama. I haven't looked into any surgeries yet; I'm not really sure where to start around here. I think it would probably be best to look into doctors in Birmingham. I'm so excited about researching everything and finding out all I can. I've lived with it for so long not knowing what it was that it is a little overwhelming to finally find out. But I am so glad that I have.
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rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: Just found out what I have.
Hey its me again. I just wanted to let you know that Deanna is from Alabama. I think she may be from Birmingham. You should try to e mail her. I am sure she has messages on here somewhere. She had the mod quad 5 weeks before I did and she is also going through the ilizarov fixator right now too. It's really nice to actually meet someone in person. Her and I have become great friends through all of this. Let me know if you can't find her address.
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veggiebug
- Posts: 257
- Joined: Wed Mar 03, 2004 8:47 pm
- Injury Description, Date, extent, surgical intervention etc: I weighed 11 lbs. 4 oz. when I was born.
I was delivered by forceps which resulted in my ROBPI.
I've never had any surgical intervention. - Location: Williamsport PA
Re: Just found out what I have.
Welcome, I'm 25 and I know how wonderful it felt when I found this forum. You go through your entire life feeling like you're the only one and then there's an entire world outhere with other people like us.
This forum makes me laugh sometimes at things I've done and felt akward in the way I do them, and once I come here so many others do the exact same thing.
I thought I invented using a wall to put earings in or to put my hair up.
Once I came here I found out I'm not the only one.
Enjoy!
-Traci
This forum makes me laugh sometimes at things I've done and felt akward in the way I do them, and once I come here so many others do the exact same thing.
I thought I invented using a wall to put earings in or to put my hair up.
Once I came here I found out I'm not the only one.
Enjoy!
-Traci
Re: Just found out what I have.
I do the same thing! I have to prop my arm on the wall to pull my hair back too.
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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: Just found out what I have.
Hi Brandy,
Welcome from me too.I just found this site and forum too, about 1 month ago.I am 65 yrs. old(LOPBI) and found a name for what we have in late 2002. It is fabulous what surgeries can be done now days, even on us adults who haven't had interventions before. I do a water excercize program for about 20 mins. 3x per week and then "play" on a floatation thingy,a slow dog paddle, for about 15 mins more. this has relieved some of the arm/wrist pain that was developing from clenching my left hand so tight; also I now put a soft "stress ball" or a rolled up sock in my hand so it won't clench tight. I've also been reading up on pain relief measures,thanks to this site..I hope to see everybody at Camp in 2005. Thanks Nancy & Kathleen for your welcome and information.
Carolyn
Welcome from me too.I just found this site and forum too, about 1 month ago.I am 65 yrs. old(LOPBI) and found a name for what we have in late 2002. It is fabulous what surgeries can be done now days, even on us adults who haven't had interventions before. I do a water excercize program for about 20 mins. 3x per week and then "play" on a floatation thingy,a slow dog paddle, for about 15 mins more. this has relieved some of the arm/wrist pain that was developing from clenching my left hand so tight; also I now put a soft "stress ball" or a rolled up sock in my hand so it won't clench tight. I've also been reading up on pain relief measures,thanks to this site..I hope to see everybody at Camp in 2005. Thanks Nancy & Kathleen for your welcome and information.
Carolyn
Carolyn J
Adult LOBPI
Adult LOBPI