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391159 tn?1257747250

Sprengels Deformity

I have Sprengel's Deformity and Schermann's Disease.  Excuse me on the spellings.  I have seen many doctors over the years with no help.  I suffer from chronic back and neck pain.  Hardly ever sleep.  I cannot doing anything strenous because of the pain.  I am currently unemployed and feel that I cannot work due to the pain.  Has anyone ever heard of this condition or have it. Any information on what I should do would be appreciated.  E-Mail or Post back.  Thank You

-Andy
6 Responses
Avatar universal
Hi,
Sprengel deformity consists of Congenital elevation of the scapula with small scapula with restricted range of motion with other congenital anomalies coexists.
When you were first diagnosed to have this condition?
Was it around your 1st birthday?
Surgery is best performed in patients 2 to 8 years old, although satisfactory results have been reported as late as 14 years of age.
Are you on any physical therapy?
Physical therapy is useful in nonoperative cases to improve the range of abduction.
Have you undergone any surgery for this condition so far?
For patients who are unwilling to accept the degree of deformity or limitation of abduction that Sprengel deformity produces, surgical relocation of the scapula is the only option.
Keep me informed if you have any queries.
Bye.
Avatar universal
My sister has sprengels and was told when she was three shr would have to wait til she was 13 to have the surger,now she's turning 16 and we have been trying to find someone to do it ever since. Please if you have any information that can help please email me. ***@****
693307 tn?1227692732
I am 37 yrs old. I have klippel-feil syndrome and Spregels deformity. I had an operation around 2 yrs old to help with my extreme case. I have had some minor difficulties throughout life.
Then when I was 18, I got in a collision with a car on my motorcycle, and it busted me up good. I have had nothing but pain since that day in my trapesius area and paraspinal in mid to upper thorax. I would reccomend meditation/biofeedback...It may not be enough or work for you. I use extended release morphine sulphate pills. The stress caused by all of your pain will kill you and your sanity before any opiate could.  Surgery is not an option after a very early age.
391159 tn?1257747250
I have not been doing well.  I have C6-C7 and t1-t2 fusion. with spinabifida occulta partail segmentation, double scolosis, spregenls shoulder, and schermanns disease.  And recently found out i have type 1 diabetes.  extreme pain on my whole spine, right leg, right shoulder, and right arm.  I can not do anything in life.  im about to just give it all up.  No doctor will help me.  Not even help me to manage my pain.  They always say well i dont know what this condition is.  Then they say well that condition doesnt cause pain.  How do they know if they dont even know what it is.  Im at the end of my rope.  The pain is literally killing me.
Avatar universal
Hello

My name is Kristine Madsen and I live in Denmark. I found your website when I searched the Sprengel deformity. We have a daughter who has just been 2 years. We discovered this summer that her shoulder blades sat quite differently and have different shapes. We were therefore referred to an orthopedic surgeon specializing in children. He glanced briefly at her and found Sprengel deformity. He said that one should not do anything about it. But he said that I could read about it on the internet which we did.
But now I begin to get confused. Because I can see that her diagnosis is often linked with other more harmful diagnoses. I can not figure out if it's the other diagnoses are primary and Sprengel deformity is secondary to dem.-Or the discovery of Sprengel deformity with our daughter is a sign that there may be other more serious things wrong.
The reason I write to you is because I think that the information can be found in Denmark is very small. - And it seems to have better knowledge of the disease? Can you in any way assist us with good advice, information, guidance, etc.?

Kind regards

Kristine Madsen - ***@****
Avatar universal
Hi Kristine

We have a daughter diagonosed with Sprengls. We live in Denmark and would like to talk with you. Please send me an email and I will reply with my phone number. My email address is martin_stroeh***@****

Best regards  

Martin Stroeh
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