new to site!
new to site!
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?
Elissa
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?
Elissa
Re: new to site!
Hi Elissa, and welcome to the board.
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.
So glad you're here!
mica
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.
So glad you're here!
mica
Re: new to site!
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
Left TBI on October 31, 1991
Re: new to site!
Elissa,
Welcome to our message boards. Glad you found us. Hope you find a doctor with whom you'll be comfortable.
Joanie, 58 years, LOBPI
Welcome to our message boards. Glad you found us. Hope you find a doctor with whom you'll be comfortable.
Joanie, 58 years, LOBPI
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rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: new to site!
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.
Again, welcome to our group of friends.
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.
Again, welcome to our group of friends.
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- 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. - Location: Montreal, Qc, Canada
- Contact:
Re: new to site!
Welcome to the site! I'm 31 as well.
Marieke (31, LOBPI)
Marieke (31, 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: new to site!
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.
Kath robpi/adult
Member UBPN BOD.
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.
Kath robpi/adult
Member UBPN BOD.
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: new to site!
Just joined the site. I'm 34/m in Atlanta w/ BPI from birth. glad to know you guys are out there and making a difference.
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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: new to site!
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.
Carolyn J
LOBPI/69
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.
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
Adult LOBPI
Re: new to site!
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.
