The Bone Of My Life!

I have lived with Sprengel Deformity, Scoliosis and Spina bifida occulta all my life. I'd never thought of looking around for a site like this before and I'm so relieved to know there are other people out there with the same afflictions. (Although not happy so many people suffer!)
I first knew of my problems at the age of 11 when playing sports, especially gymnastics was difficult for me as my left arm goes up no further than level with my collar bone. I then started experiencing pain in my spine. After going several times to my GP and bring sent away with 'growing pains' despite him never actually examining me! It took my father paying for a private consultation with a doctor to get a diagnosis. The amazing thing is my brother and sister both died from Spina Bifida before I was born and it didn't occur to anyone to check me before I was too old to have surgery. I was 15 when I was finally diagnosed with the above conditions and surgery would have been too dangerous. I had a series of injections in my spine to no effect and even had a physiotherapist insist I strapped my shoulder with Elastoplast to bring it back down in line with the other one!!!! This just caused more pain so all attempts were then stopped and sent off to suffer in silence.
Now I'm 35 and have had a lifetime of back pain. Just recently though I have been having sharp pinching pains in between the shoulder and spine where it joins and I wondered if anyone had experienced this as they have aged with the affliction?
Finally it's great to read everyone's stories and know that I'm not alone. I wish all the best to all other members :))
Hellsbelle30 Hellsbelle30
31-35, F
1 Response Jan 14, 2013

I too have Sprengel's Deformity, Scoliosis, Spina Bifida Occulta and fused ribs and have lived with the condition for 66 years. It is comforting to know that I am not alone. For so long I felt like a medical curiosity, and being told that you are rare does not help.
I was diagnosed as a baby but any suggested surgery was very experimental and left deep disfiguring scars, so that my parents decided against it. I think my Sprengel probably conforms to Cavendish classification grade 2-3.
I have to say that for most of my life it has not greatly troubled me apart from the physical appearance, which has not prevented me from marrying, having two healthy children and a 35 year career as a teacher. I am now experiencing regular moderate pain which physiotherapy is helping a little. I have read that the condition is sometimes associated with kidney problems. I wonder if anyone has experienced this?
What I would like to say is, you can live with it if you are determined not to let it affect your life. Over the years I have developed the attitude that if people don't like my "funny" shoulder then it is their problem, not mine.
I wish all the best to all fellow sufferers and I am sure that medical research and expertise have improved in the years since my diagnosis.