seeking answers
seeking answers
Positive I suffered obstetrical brachial plexus injury at birth.My life has been highly affected by this injury.The last few years I have developed symptoms that I'm sure are related to obp.Unable to find a physician who doesn't think the idea silly.Not even taking time to view what are obvious evidence that injury did occur.Will someone please help.
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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: seeking answers
WELCOME Barry to UBPN and our Family here. We all share our experiences living with OBPI, information and Support. THere is a "Resource" Link on the Home Page where BPI Specialists and knowlegable PT and OT.s are listed and iformation about them.
There is also helpful information on all of the Message Boards. You are welcome on any Message Board.
Personally, I learn alot from parents of injured children on the "General" Message Board too.
Questions are welcome on any Message Board and there is no dumb question on UBPN.
I found UBPN in 2004 at age 65 and it was the 1st time I had a name for my injuries other than "Birth Defect". I have learned sooo much here and have made lifetime friends with al of the suport I have recieved here.
Barry, please come here often and please tell us more about yourself and what kind of help/answers you are seeking.
Also,under Resources Link there is a Link to "Information for Adults with OBPI".
Again,..Welcome.
Carolyn J
LOBPI/69
There is also helpful information on all of the Message Boards. You are welcome on any Message Board.
Personally, I learn alot from parents of injured children on the "General" Message Board too.
Questions are welcome on any Message Board and there is no dumb question on UBPN.
I found UBPN in 2004 at age 65 and it was the 1st time I had a name for my injuries other than "Birth Defect". I have learned sooo much here and have made lifetime friends with al of the suport I have recieved here.
Barry, please come here often and please tell us more about yourself and what kind of help/answers you are seeking.
Also,under Resources Link there is a Link to "Information for Adults with OBPI".
Again,..Welcome.
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
Adult LOBPI
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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: seeking answers
Barry
Welcome to the club. I had a doctor tell me that I could not have had Erb's Palsy because I "looked so good".
I have all my nerves involved and Horner's Syndrome.
Don't feel bad because most doctors are not familiar with OBPI and have not been trained to evaluate us.
It would be best if you could find a BPI specialist.
They know what they are looking at and can help.
Because there are no long range studies they have no idea how this injury affects us as we age.
For those of us with a birth injury we start to show symptoms of over use with our unaffected arms in our teens.
One doctor (who was very honest) said some of my issues were similiar to those people who had Polio and are suffering from Post Polio syndrome. Unfortunately for us no one seems to even take the time to see how this injury impacts our entire body.
Please feel free to ask any questions at all. Sometimes what seems like a silly questions ... is not. Because it opens a conversation and we find that many of us have similar issues.
Many years ago, I asked what I thought was a dumb question but it was something that annoyed and puzzled me. I asked if people walked around with things in their hands, like keys,papers, phones...
and did not even realize it. I can't tell you how many times people would ask why I was still holding my keys or I looked for something and did not realize I was holding it.
Hang in there... and keep posting
Kath robpi/adult
Welcome to the club. I had a doctor tell me that I could not have had Erb's Palsy because I "looked so good".
I have all my nerves involved and Horner's Syndrome.
Don't feel bad because most doctors are not familiar with OBPI and have not been trained to evaluate us.
It would be best if you could find a BPI specialist.
They know what they are looking at and can help.
Because there are no long range studies they have no idea how this injury affects us as we age.
For those of us with a birth injury we start to show symptoms of over use with our unaffected arms in our teens.
One doctor (who was very honest) said some of my issues were similiar to those people who had Polio and are suffering from Post Polio syndrome. Unfortunately for us no one seems to even take the time to see how this injury impacts our entire body.
Please feel free to ask any questions at all. Sometimes what seems like a silly questions ... is not. Because it opens a conversation and we find that many of us have similar issues.
Many years ago, I asked what I thought was a dumb question but it was something that annoyed and puzzled me. I asked if people walked around with things in their hands, like keys,papers, phones...
and did not even realize it. I can't tell you how many times people would ask why I was still holding my keys or I looked for something and did not realize I was holding it.
Hang in there... and keep posting
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: seeking answers
Hello Barry;
I'm sorry that you're having troubles with your arm, but I'm glad that you found UBPN. Kath is right about being examined by a BPI specialist. Carolyn pointed out links to information for adults. The UBPN Home Page also has links to help you find medical specialists. Go to "Resources" and "Medical Resources" and "United States". From there you can find physicians in your geographic area (Pennsylvania?)
Hope this helps. Let us know.
John P.
UBPN BOD
ROBPI for 68 years
I'm sorry that you're having troubles with your arm, but I'm glad that you found UBPN. Kath is right about being examined by a BPI specialist. Carolyn pointed out links to information for adults. The UBPN Home Page also has links to help you find medical specialists. Go to "Resources" and "Medical Resources" and "United States". From there you can find physicians in your geographic area (Pennsylvania?)
Hope this helps. Let us know.
John P.
UBPN BOD
ROBPI for 68 years