OBPI and my doctors have given up trying to fix it
OBPI and my doctors have given up trying to fix it
I am a fifteen year old girl with OBPI (obstetrical brachial plexus injury). During delivery I started coming out posterior but then turned sideways and became stuck with only my head out. So, in attmept to save my life, the doctor then pulled on my head and luckily pulled me out. During initial testing, the nurse noticed that my right arm wasn't moving. I was then sent to a pediatrician for further testing. He diagnosed it as neurological injury and sent me to Calgary for more in-depth testing. They discovered I had OBPI. I have nerve damage between the 4th and 5th vertabrae. The doctors hoped it would self correct and i was given excercises to help stimulate nerve growth and to tone the muscles in my shoulder. These excercises were very painful, so I'm told ,I screamed and cried in pain whenever they were preformed. At 6 months I returned to Calgary for a check-up. They took x-rays and discovered my shoulder was dislocated and that was why it hurt to do the excersices. I was scheduled for surgery right away, to perform a scapular release to put my shoulder back into place. After surgery I ad to wear a "statue of liberty" splint for 6 weeks all the time and an additional 6 weeks just at night. Now that my shoulder was inplace, they started to concentrate on the nerve damage, to see what could be repaired. I was sent to Vancouver for a nerve surgery when I was a year old. I was again put in a splint for 6 weeks. While iIwas in Vancouver they found that my shoulder was out of place again because I did not have the muscle to hold it in place. Neither of tthe first two surgeries were of any success. I continued to do physical therapy in hopes of keeping range of motion and strengthening muscles. I had anther surgery when I was four years old,itwas another scapular release, which also failed along with a 3rd and final scpauler release when i was 9. So, im back to square one and in need of some help. I do not have any functioning triceps my shoulder is dislocated, and my bone has grown into my elbow funny so im unable to straighten it and my doctors have pretty much given up on me HELP ANYONE!!! i want to be able to function like normal kids and play sports like everyone else. i want to be able to do the monkey bars and raise my arm higher than my head. PLEASE HELP ME!!! if you knnow of any doctors that could help i would be ever grateful!
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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: OBPI and my doctors have given up trying to fix it
Hi Kody,
My shoulder is subluxated (partially dislocated), been like that almost my entire life and there is nothing they can do to help it either as I do not have the muscle strength needed to keep it in place. The should has also developed abnormally as the nerve damage and muscles were not good enough to make it grow how it should.
I can't raise my arm overhead actively, but can passively (meaning I do have the range of motion to put it there) to be able to do things as long as it is holding on to something up there. Can't do monkey bars but can hang from them (can't go from one to the other).
I had a tendon transfer when I was 14 (10 days before my 15th bday) to get external rotation but it only worked partially as the shoulder joint is malformed and it's harder to get good results when you are older.
You have had many surgeries that didn't work unfortunately, and it may not be possible to "fix" it to be able to do all the things you want to do "normally".
You say you have an elbow contracture, these can be tough to manage. There are ways to help it, serial casting, wearing braces that stretch it out, but they are all long term and ongoing therapies that need to be done.
I am not sure where you are in Canada (I am guessing Alberta?).
there are a few people listed in the medical directory on here;
http://ubpn.org/medicalresources/canada-bpi.html
I am in Montreal and went to the Shriners Hospital.
Marieke 33, LOBPI
My shoulder is subluxated (partially dislocated), been like that almost my entire life and there is nothing they can do to help it either as I do not have the muscle strength needed to keep it in place. The should has also developed abnormally as the nerve damage and muscles were not good enough to make it grow how it should.
I can't raise my arm overhead actively, but can passively (meaning I do have the range of motion to put it there) to be able to do things as long as it is holding on to something up there. Can't do monkey bars but can hang from them (can't go from one to the other).
I had a tendon transfer when I was 14 (10 days before my 15th bday) to get external rotation but it only worked partially as the shoulder joint is malformed and it's harder to get good results when you are older.
You have had many surgeries that didn't work unfortunately, and it may not be possible to "fix" it to be able to do all the things you want to do "normally".
You say you have an elbow contracture, these can be tough to manage. There are ways to help it, serial casting, wearing braces that stretch it out, but they are all long term and ongoing therapies that need to be done.
I am not sure where you are in Canada (I am guessing Alberta?).
there are a few people listed in the medical directory on here;
http://ubpn.org/medicalresources/canada-bpi.html
I am in Montreal and went to the Shriners Hospital.
Marieke 33, LOBPI