Sprengel's Deformity: Hope my story can help someone


I was born with Sprengel's Deformity in 1951 and had major surgery in 1955. I believe it was to rectify my condition as much as possible but still left disabled, not able to lift or rotate my arms properly. I am sure things have much improved, in terms of operations and treatment since this time. However, I wish to raise awareness that this condition may also be accompanied by others, often lying hidden for years, as in my personal case. I also have Spina Bifida Occulta and this alone did not cause any problems. I did have to contend with the cosmetic appearance of this condition, a large mole and excessive hair, at the base of my spine. However, in 2006, I began to suffer terrible back pain and was fobbed off by my (then) GP despite complaining of loss of sensation and frequent pins and needles (paraesthesia). Eventually, via an alert different professional, I was given an MRI scan in Dec 2006. This revealed I had another condition called Diastematomyelia. My own research discovered that this can be a condition (albeit rarely) to Sprengel's Deformity. In 2007,as I began to lose mobility, I underwent major spinal cord surgery. This has left me permanently disabled.

I hope this will not be viewed in a negative light. My purpose is to raise awareness of this condition - as from my own personal experience and to forearm people with the knowledge they may require. Follow your instincts re presenting pain etc and demand further investigations if you require them. If this helps anyone else then I will feel useful as a part of this community. Thank you for reading.
spike51 spike51
61-65, F
1 Response Dec 1, 2012

Thank you for the heart. I do not log on very often but it was lovely to receive