I Have Sprengel's Deformity

Greetings, what an interesting website! I was born in 1955 with Sprengel's and my Dad noticed it ~1959. I was sent to Boston Children's Hospital in 1959 for a consultation, but it was decided that I would have the surgery in Michigan...

Looking for recommendations on the best doctor with experience in Sprengel Deformity. We would like to examine our options before deciding on a way of treatment.

Thanks

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...

Hi, i have just found this group, after a lot of searching online about me disorder.I was diagnosed with Sprengle shoulder when i was 14 and i am now 26. We're all individual, so of course the symptoms differ, but for me, the most...

Alfie my 3 year old is booked in for his operation next month....eeek.
Very worried and stressed at the moment.
If any body out there, who has had the operation or parents of children that have had the operation and would like to shine...

I did post earlier to someone else's question and then decided to write this. I was diagnosed with sprengles at birth, there were many concerns that I wouldn't survive the first week. I did, but that was the easy part. Mine is on the...

I am 39, & had an operation at age 2 at a University in SF,CA which helped to correct the severe shoulder displacement. Anyone know about modern medicine in this area? As far as I know, it is relatively unknown still. I have to go to...

I also have Klippel Feil Syndrome. I was not diagnosed until about 15 years ago, I am 51 now. Most of my life I was ashamed of my condition. As a youngster I first noticed I could not do some things like other kids such as handstands...

I always knew about my shoulder thing, but I did not know it has a name. I just told people I was born with a shoulder higher than the other. My mother's uncle was an orthopedic doctor so I got good fallow up from the start. I even went...

Hello,
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...

I saw the orthopedist today. I have Sprengel's Deformity. That's what has been wrong with my back all of these years. Now I can hardly use my right arm. The orthopedist said there's nothing he can do. It should have been surgically...

First off, I just have to say how excited I am to find others with Sprengel's!!  I was misdiagnosed and blown off until I was about 19 years old.....I am 34 now.  My Sprengel's is not too terribly noticeable from the front...

My name is Ioanna and I'm 16 years old. I visited a doctor today,who told me that I have Sprengel's Deformity. He's waiting for my x-ray computed tomography results to define the seriousness of my problem. Please tell me what to do...

My 17 year old son was just diagnosed with Sprengel's Deformity, as well as Klippel-Feil syndrome and scoliosis.   We were sent up to the University of Missouri to see a specialist and now have several appointments to check...

I first posted my story in 2010, absolutely stunned that there was a website like this.  I have read the stories and responses over and over again in trying to arrive at a point where i could confidently say that we were going one...

Hi! I was diagnosed with sprengels deformity when I was around three years old. My doctor knew something was wrong at birth but it took a while to officially diagnose it. My left shoulder is raised along with my shoulder blade. In 22...

My son is 8, and we have been fighting with this crazy issue with his neck and shoulder for years. I have research and research until yesterday have found somewhat of a answer. Logan my son was born with tortacolis, from day one we knew...