Hi everyone! My name is Elissa (pronounced A-lee-sa) and I literally stumbled across this site. I've always known that I had a brachial plexus, but NEVER knew or realized that there was a whole web site dedicated to it! I was recently told that I may have a curvature in my spine due to my injury. I went to a doctor and had a HORRIBLE experience. I decided, today at work, to do some light research to see if I could find a doctor to help me and stumbled across all of you!
I'm so excited and encouraged to hear that many of you have had surgeries, which gives me hope. I guess it was just a condition that I assumed would not change in my life. I'm 31. I live in Houston, TX. Does anyone know of any doctors that specialize in OBPI here? Or how I can find them?
I'm sorry I don't have information about doctors in Texas, but the "Resources" link on this site (located in beige direclty underneath the UBPN logo) lists many OBPI specialists.
I also wanted to let you know that many board participants are gearing up to go to UBPN camp right now - so please don't be discouraged if it you don't get many responses just yet.
Hello Elissa. Glad you were able to find us. Sorry you had such a bad doctor visit. It is really difficult finding the right care. I wish you much luck in your search.
Joy in FL is now living in Georgia!
Left TBI on October 31, 1991
Welcome to the message boards. I felt the same way when I found this website it is so amazing isn't it?
You have one of the best doctors there in Houston. His name is Dr. Nath. He is a Brachial Plexus Specialist and does a wonderful job.
I live in Montana and I went to him for my surgery about 5 years ago. If you would like more information please let us know. People will put you in contact with him.
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.
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.
Elissa
Welcome to the site! I am so glad you found us.
We all felt the same why when we discovered we did not have a "rare" birth injury.
It's sad but true that no one seems to give us the information we need until we do our own research.
I love the Internet for that reason.
I was so shocked when I found UBPN in 1999 and at that time there were only 3 or 4 adult/obpi.
I was shocked to see that babies were being injured at such and alarming rate then.
I am sad that it continues today.
I am leaving for camp and will be on and off the message boards during camp.
I wish you found us sooner and could have come to camp.
I did not want to go the first time because I thought it was just for kids.
This will be the third camp I am attending.
We only run camp every two years so I hope we get to see you at the next camp.
Feel free to ask questions on any of the message board.
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.
WELCOME "Cdunn"!
I am glad you found us. I found UBPN at age 65 only after taking a computer class and conquering my fear of this "technology age"...
As Kath said, I hope you can come to the next Camp which is held every 2 years on Labor Day weekend. This is all inclusive, all generational. For me, attending Camp 2005, was a life-changing experience and very healing, emotionally. I hope you can keep in contact and make the next one.
...oh yeah,there is no such thing as a dumb question on any message board.
I am new to this site as well. I am 22 years old, and I have had my injury since birth. I had no idea that there were so many other people with BPI out there. I have been reading through a lot of these posts, and I have been holding back the tears the whole time. My injury has been something I have struggled with for my whole life, and it feels amazing to know I'm not alone. I read a note someone left about wishing they could supinate, another note about trying to find ways to tie their hair back. I absolutely hate trying to style my hair. It's so awkward and uncomfortable to wedge my arm up against the wall. I always wished I could play sports like everyone else, or heck, even change a light bulb. I just wanted to thank all of you for sharing your stories, frustrations, and triumphs. I wish I could come to camp, maybe next year.
