I am going to a new doctor here in Atlanta that supposedly has worked with some OBPI Adult patients before. I have never really been to a doctor that knows what he is talking about as far as BPI goes, so I am super excited!! I keep telling my friends/family, but I do not think they understand my joy. Anyways, I just thought I would share that. Also, if anyone has any ideas of questions/comments/anything I should tell the doctor, please let me know!! I want to make the most out of my appointment and want to make some serious decisions about what/any procedures I may pursue.
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.
Andrea
When are you going?
Our first visit with a bpi specialist is a bit confusing.
We have so many questions and so little real knowledge as to the extent of our original injury.
Have you had any emg's or mri's? If you have bring the films with you not just the reports.
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.
That is so exciting. I know that sometimes when I get all excited about UBPN life and I tell my family and friends they just don't seem to have the same level of excitement as I do. But they don't understand it the way I do, to be alone for 20+ years and finally find people that get it, truly 100% get it. Ten years later and my excitement hasn't diminished even a tad.
I still haven't made the jump to a Dr. who really gets it.
I'm not sure which questions you should ask. Try to think of things that you're concerned about. Otherwise Kath is right mostly on a first visit my concern would be more of the extent of my injury and possibly what else may be becoming "overused" because of it.
Not much help I know. I just wanted to let you know you can express your excitement here anytime.
im so jealous of you. i never had an operations nor a visit to a doctor since i was 3 years old and im now 20. i really thought that if my perents had money that time my condition my be better but still im very thankful for my mother. becuase she massages my right arm everyday when i was a kid until i was 7 i guess and mine is not that noticeable now although i cannot stright it. im really planning to see a doctor when i have the money since im graduating now in college and im a nursing student. its really frustrating because i have little knowledge about our condtion even though im a nursing student. when i will be able to get a job and money, i will definitely visit a doctor.
I went to the doctor awhile back, it was a nice experience, because I think he might know what he is talking about. I go back in a couple weeks to discuss some options. I have started on Physical Therapy, the best part is when they massage the shoulder area.
Today, we tried some electrode therapy, or something like that, where the machine contracts the muscle for me.
Has anyone done any of that...success?...pain? It sure felt weird, having my arm move in ways I can not do myself...
This is such a nice place to post all of our questions and comments. Thanks to everyone for support!
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.
I graduated from nursing school last May (2008). Congrats on doing it too!
Acanneg,
I had NMES (electrodes used to conduct the currant to contract your muscles) done after I had surgery when I was 14. It worked a bit but it was more for me to be able to try to contract my arm at the same time as the machine to try to get it stronger.
NMES stands for Neuromuscular Electrical Stimulation.
I own a machine that has both NMES and TENS.
I used the electrode therapy... after my second surgery to extend my bicep tendon. I've always had a hard time firing my tricep, and the electrode system helped me find that muscle. It's been 2 1/2 years since that surgery, and it's still a daily effort to work certain muscles.. baby steps But, overall my arm is a lot stronger, more tone, and looks more normal.
Anyways, I just thought I would share that. Also, if anyone has any ideas of questions/comments/anything I should tell the doctor, please let me know!! I want to make the most out of my appointment and want to make some serious decisions about what/any procedures I may pursue.
But, overall my arm is a lot stronger, more tone, and looks more normal.