I Have Sprengel's Deformity

Sprengel's Deformity anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Sprengel's Deformity. You're not alone. 124 People

    Tried And Tested Relief For Sprengels

    I just wanted to let people know about a therapy i have just undergone which has been really helpfull.I have been aware of my sprengel shoulder for 11 years and tried every pain reliever in the book. I've also had the countless referrals to phsyio just for them to look bewildered...
    Ansy84 Ansy84
    26-30, F
    2 Responses Jan 25, 2010

    Sprengel's Is More Complicated Than I Thought

    I am 54 years old, with Sprengel's. My parents noticed that my shoulders weren't even when I was about 2. I saw a few specialists. Surgery was discussed, but didn't happen. I knew there was something wrong with my shoulder but always believed I had been injured at birth. I didn't...
    KatieKircher KatieKircher
    51-55
    4 Responses May 2, 2011

    19 Years Old, With Sprengels...

    I am currently 19 years old and have been to countless doctors since I was 10, when my mom noticed my right shoudler lower than my left. They told me I had this, and I had that, and then finally told me I had Sprengels, which I had never heard of. Neither had my mom. Luckily...
    nelthorpe91 nelthorpe91
    18-21
    7 Responses Mar 12, 2011

    Hello. I'm actually happy to have found a place

    to read others similar stories to my sons.. when he was born, he was perfect. At about 4-5 months old, my mother noticed he wasn't really using his right hand to grab at his bottle/toys, nothing, and had asked me to ask the doctor if that's normal or not. His Pediatrician said...
    amburk amburk
    26-30, F
    Mar 21, 2014

    Just Had My Second Surgery; "modified Woodward Procedure"

    Hi. I'm 24 years and had my first op when I was 2 years. Survived surgery last week on my R sprengels shoulder and spent 5 horrific days in hospital (mainly because the morphine was making me too sick!!). Just at home recovering well with little painkillers and a sling on my arm...
    j1234567890 j1234567890
    22-25
    2 Responses Jun 28, 2012

    Hello my son is 4 he got diagnosed with

    sprengal shoulder at age 2 just wondering how this will affect him in life the doctors don't tell me nothing Iv read aswell a lot of people have other illnesses are these connected to sprengal shoulder iv noticed my son's ribs one side really sticks out they feel as if there...
    kimjane2015 kimjane2015
    31-35, F
    Aug 13, 2015

    I Need Advice Re: My Son With Sprengel's Deformity.

    My son was diagnosed with SD this week. He is 6 1/2, right-handed (the SD is on the left), and has a number of other congenital defects of the spine (among other things). Anyway, I was wondering if you would be willing to share how you feel about having (or not having) the...
    trackmedown trackmedown
    41-45
    10 Responses Feb 16, 2011

    My Daughter Was Diagnosed With Sprengel

    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
    Gil1223 Gil1223
    36-40
    1 Response Dec 17, 2012

    I Have Sprengel Deformity.

    Hi All, I am from Jharkhand, India suffering from sprengel deformity, and I discovered it only when I was around 12 or 13. Once When I was attending a P.T. session we were asked to raise both our hands. The trainer came to me and asked me to straighten my right hand ,and I...
    deleted deleted
    26-30
    Sep 10, 2013

    4 Year Old Son With Sprengel's

    My first born son was diagnosed with Sprengel's, finally at age 3.  He had surgery when he was 13 months old for what we were told was just an osteochondroma, which is a benign cyst.  My friend noticed at age 10 months, while taking his pictures at the beach, that his right...
    alucas111 alucas111
    36-40
    3 Responses Aug 1, 2011

    Not Letting It Define Me

    My name is Stephanie...I was born with Sprengel's deformity and had my corrective surgery at age 6. I also have scoliosis and arthritis. My mother has always called it a "disease"...which greatly bothers me as I am not "diseased" at all. Thankfully my parents corrected things...
    stephanie2669 stephanie2669
    41-45, F
    3 Responses Jul 26, 2012

    Late Surgery For Sprengels

    Hi, I just found this group-I have never known any one else with sprengles, so I was surprised!  i am 58 (F) and have right sided sprengels and scoliosis.  My collarbone etc are also misaligned.  When I was in my 20s, I joined the Army-during the physical, the Dr...
    caliber75 caliber75
    56-60, F
    Apr 6, 2010

    Living With Pain

    I discovered I had Sprengl's deformity at the age of 19 & have lived with it every since. I'm now 44 & the pain has gotten worse. I wanted to get surgery done until I just read about the risk of it at my age. I have tried the physical therapy but it doesn't truly help. I would...
    Sncrlylvgme Sncrlylvgme
    46-50, F
    2 Responses Oct 6, 2013

    I'm 33yrs old, I was born with bi-lateral

    sprengels. Born to a family which didn't have much $, and having a deformity that's rare I went undiagnosed until a year ago. As a child growing up everyone just assumed I looked odd and had poor posture. Working on a farm I had large trapezoid muscles which hid the protruding...
    TrisCat TrisCat
    31-35, F
    1 Response Feb 11

    I have this condition

    and right now I'm in a lot of pain with it gets me down so much
    noelaine noelaine
    46-50, F
    May 7, 2015

    Hello! I Have Sprengel's Deformity.

    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 and even turning my head in a normal way. I...
    rawwill rawwill
    51-55, M
    Feb 21, 2013

    22 Years. 20 Years Post-surgery. Sprengel's On R Arm. I Have Difficulty Weight Lifting!!

     22 years old. I am also a medical student  and getting more interested in this condition I have. I haven't done orthopaedics yet but I will find out as much as I can and share with you guys! I am very interested in other people's experiences too.So I am.. 20 years post...
    j1234567890 j1234567890
    22-25
    7 Responses Jan 29, 2011

    How Many Of Us Are There?

    Just a quick question. Does anyone know how many adults (Worldwide or in the Uk) have Sprengel's deformity? It seems to be almost unheard of in adults. But if someone could give me a rough figure it would be much appreciated. Thanks for your time. Pete
    PeteHarding PeteHarding
    51-55, M
    16 Responses Oct 2, 2010

    I Was Born With Spengel'S Deformity In 1955

    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 where I lived at the time. At that time the...
    Kathy0155 Kathy0155
    56-60
    Feb 11, 2013

    Sprengel's Deformity: Hope my story can help someone

    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 much improved, in terms of operations and...
    spike51 spike51
    61-65, F
    1 Response Dec 1, 2012

    I Have A Son With Sprengel's Deformity

    My son is 15years old. He like kikboxing. I love him very!! I have no information of Sprengel's deformity. I need that!! help me!!
    hoonet hoonet
    36-40, F
    Sep 28, 2012

    Please Help Me

    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 cause I have already got desperate. My mom says...
    ioannaa ioannaa
    16-17
    1 Response Nov 16, 2012

    Stressed And Unsure

    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 something was off. Took him to ortho when...
    Williamamy5 Williamamy5
    36-40, F
    1 Response Feb 26, 2013

    My Son Was Just Diagnosed

    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 his kidneys, heart, MRI's for his neck, etc...
    CeeJayDynamite CeeJayDynamite
    41-45, F
    6 Responses Sep 29, 2009

    Ups And Downs Of Sprengel's

    Hi all - good to meet you. Diagnosed very young and had modified Woodward op at 6 which basically improved my look but not much to improve function. Had 10 weeks in hospital (it was 1964) and loved being a nurse to the babies - it got me interested in a medical career - hated my...
    Jammie1 Jammie1
    56-60, F
    1 Response Jul 26, 2013

    Life Experience With Sprengles Deformity

    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 right, but also includes the doubles s...
    ravensfare ravensfare
    46-50
    2 Responses Jan 13, 2013

    Living With Sprengels Now Age 24

    I have been looking for a website like this for very long. So glad to find it. I was diagnosed with sprengels at very young age. My mother took me to a specialist in SF and that was the last of that. I am now 24 and wish i had the surgery. My right shoulder is noticeable. My...
    sunshinerays sunshinerays
    26-30
    2 Responses Sep 18, 2013

    Now I Know The Name Of What I Have!

    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 to the Shriners Hospital for a little while...
    Cathjosee Cathjosee
    36-40
    Apr 19, 2013

    Life With Sprengel Deformity, Horrible Pain

    Im so glad that i found this group, but im not suprised to see so little is the group and see that is so common in all of us that had this deformity to suffer this horrible pain all the days in your life. I was born in Puerto Rico 29 years ago. My mom was a nurse, so she notice...
    atkitty atkitty
    26-30
    1 Response Oct 27, 2010

    Hi, my two year old son was just diagnosed with

    Sprengels. We are seeing a specialist at Yale new haven hospital next week. I'm so confused about this diagnosis and how I should prepare for the visit or if there are any specific doctors in the NYC area I should try to see who are experts in Sprengels? Does anyone have any...
    Woodyj81 Woodyj81
    31-35, F
    Feb 18, 2014

    Adult Living With Sprengels Deformity

    I was diagnosed with sprengels deformity as a child. Nothing was done for it at the time and the older I get the more pain and discomfort I have. I am almost 40 and have had pain/problems with my shoulder for as long as I can remember - it wasn't near as bad when I was younger...
    stover37 stover37
    36-40
    1 Response Sep 29, 2013

    will someone please read this

    and actually give me answers? I am 19 years old with Sprengles in my left arm. I have back pain, severe right hip pain and pops out and cracks, right ankle pain that also cracks, and my left jaw cracks, pops, gets stuck, grinds. When i crack my jaw the popping is extremely loud...
    Ashlee65 Ashlee65
    16-17
    1 Response Oct 21, 2014

    My Sweet Girl..

    I feel so bad.. I have a 15 year old daughter who at 4 was diagnosed with Sprengles. She was pushed down on the playground and had to have xrays that is how they found it.. We went to several doctors all with the same words.. it is something she will have to live with. She is...
    breazie breazie
    16-17, F
    3 Responses Aug 8, 2011

    No Help For My Deformity

    I am 16 years old. When Iwas born no doctor in my part of the state knew what was wrong with my back. it wasn't until I was six years old that we found a doctor that could diagnose me with Sprengel's deformity. at that time, my parents were told that i would most likely later on...
    emmers5 emmers5
    16-17, F
    Oct 5, 2012

    My Son Has Sprengels And Is Booked In For His Operation In October.

    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 a light on what we should expect on the...
    hch1984 hch1984
    26-30, F
    5 Responses Sep 20, 2011

    My 4yr Old Daughter

    When my daughter was about 10months old , my husband noticed something was wrong with her shoulder/shoulder blade . I called her PCP & made an appointment . They referred me to a pediatric orthopedic , which I saw about 3 months later . He said everything looked fine & he would...
    Marie1030 Marie1030
    22-25, F
    1 Response Oct 9, 2012

    22 And Considering Surgery

    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 years I have gotten pretty good at hiding my...
    medougherty medougherty
    22-25
    1 Response Feb 21, 2013

    My daughter is 3 yr old,

    she just had the sprengel shoulder. we had a tough time coping up with decision to have the surgery done, she's so small for all this. but then finally gathered the courage to proceed with it, that's what is right for her future. any parents having questions please ask and I will...
    rameshdad rameshdad
    36-40, M
    Dec 6, 2014

    How Do You Live With Sprengles? Let Alone Get A Good Nights Sleep?!

    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 prominent things, are never, ever being able to...
    Ansy84 Ansy84
    26-30, F
    12 Responses Jan 25, 2010

    How Does Aging Affect Us?

    Hi. Can't believe I found this group as it's so rare. I'm a 46 yr old female. I was diagnosed with Sprengels at 5 months of age had surgery at age 6 and then again at 16 for spina bifida. I also have a mild heart valve defect. I have always had quite severe pain in my neck...
    Sheriweldon Sheriweldon
    46-50
    4 Responses Oct 28, 2010

    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...
    Hellsbelle30 Hellsbelle30
    31-35, F
    1 Response Jan 14, 2013

    New Surgical Techniques?

    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 Stanford to get a qualified doctor in the area...
    captainkeyz captainkeyz
    36-40, M
    1 Response Jan 31, 2011

    Noticed I Had Something Wrong On Left Side Since I Was 16.

    I'm now 44, my name is Jim or James.  I live in the Seattle, WA area, Auburn, WA to be exact.  I'm really glad I found this site, totally at random, I have to admit, but very happy indeed.  My life has been difficult to say the least, because of my having...
    Yournotalone Yournotalone
    41-45, M
    4 Responses Feb 26, 2010

    Hi everyone, I am so glad to have found this

    website.First, I just wanna to tell that I came from Quebec city, in Canada, so sorry if my English is not very good.Ok, so I'll start with this : I am a 22 years old boy, who's having a great life, looking (I think) good, with great friends, but no girlfriends, sadly.When I was...
    Samuel93 Samuel93
    22-25, M
    Sep 16, 2015

    Severe Chronic Pain From Sprengel's

    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, however, my bare back is whole different story...
    msdeltagirl msdeltagirl
    31-35
    6 Responses Jun 12, 2010

    Surgery Done - My Son Has Sprengel's

    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 way or the other.  The stories here...
    1tkoi2mkuv 1tkoi2mkuv
    36-40
    8 Responses Jun 23, 2011

    Concerned

    hello everybody, i was diagnosed very early with the sprengel's deformity on my right shoulder (I think as a baby even) and had an operation when i was 6 years old. it was the right thing to do, it enabled me to move my arm a lot better and it's less obvious from the front...
    elisekutter elisekutter
    36-40, F
    2 Responses Aug 21, 2013

      I’m very glad I found this group.

    I hope someone helps me. I am a male with 30 years old and I had recently scoliosis surgery. I am 2 weeks post-op. The thing is, my scoliosis had a thoracic curve tilted to the left, so my shoulder balance pre-op was totally ok. I was not used to see my back but I imagine that...
    richardishere richardishere
    31-35, M
    Mar 15

    It Was Diagnosed Today

    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 corrected when I was under eight. My...
    Pidgie Pidgie
    46-50, F
    9 Responses Jun 30, 2009
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