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My son was diagnosed with Sheuermann's Disease or Scheuermann's Kyphosis 2 weeks ago. I was wondering if there is anyone on the board who can share their experience with this?

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My 15 year old cousin has been diagnosed with Scheuerman’s Disease, too. He went to a chiropractor and he will determine what needs to be done depending on the curve of the spine. He had a very severe curve and he was done growing so he had surgery.
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Hello there,

Here is some info about the Scheuermann's Disease:


There are a group of conditions in which developing bones in children and adolescents become temporarily soft, resulting in some deformity due to the pressure of bearing our weight. These diseases are named osteochondroses.

After 2-3 years the bones harden again in their newly acquired, often deformed, shape. The cause is unknown and I am not aware of any genetic factors involved in the process.

Scheuermann's disease is a form of juvenile osteochondritis, which usually affects several vertebrae, classically in the thoracic or chest region. The active stage of the disease usually affects 13-16 year olds to cause pain in the thoracic spine with rounding of the back. After a few months the pain subsides to leave a slight forward stoop. Then in later life there may be renewed backache from the development of osteoarthritis.

In this condition there is a disturbance in the normal formation of some vertebrae and the cartilage plates that separate the vertebrae. The changes are most marked at the front margins where the bones bear the most force and weight. Consequently, the discs may be narrow at the front and the vertebral growth area may not develop fully such that instead of becoming squared like building-blocks, they are more like wedges. This can lead to arthritic change in the bones and joints of the affected part of the back.
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Well I had totally different opinion about chiropractors, therefore I would suggest staying away from a chiropractor. My brother has the same disease of the spine and suffered a bulging disc due to a work injury. A chiropractor said he could help him, but after 2 treatments, the pain was increased, after 3 or 4, he could not walk. His disc had become herniated and was pressing on the disc due to the treatments. Finally the surgery was necessary after a long year of agony waiting for surgery. Take care before you visit a chiropractor. Sometimes patience and a lot of rest is a better alternative to healing. Anyway, I wish you good luck!
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Frustration
That's what this damn Scheuermann's Disease is!

Our son had another checkup today; getting the results of his MRI. The MRI doesn't show anything that could be contributing to why his legs are going numb. The doctor feels this has nothing to do with the Scheuermann's. So now the doctor wants us to get a second opinion with a spinal surgeon ; but we can't get in to see him until April 27th. For cripes sake.. that's over a month. In the meantime, Sam has to stay in physical therapy 3 times a week for thoracic strengthening and pain management. Right now he's on 600mg of Ibuprofen every 8 hours and 1000mg of Tylenol which are eating at his guts and today Tramadol HCL 50mg for bedtime was also prescribed.

It sounds like these horrible backaches Sam is having to endure probably won't quit until he's done growing. Now he just needs to learn to live with and manage the pain as best he can. God, I pray these next few growing years go by fast!! Once he gets past the growth years his pain at least should eleviate; but as for the deformity in the vertebraes and his physical appearance, only time will tell. What activities he will be able to perform now and as an adult only time will tell. Will he need surgery down the road... we don't know... will he end up in a wheelchair... we don't know....will he have pain free days....we don't know...will he be able to run ... we don't know....what are his lifting limitations....we don't know...will pulmonary and cardiac problems develop...we don't know...will he ...will he...will he.... we don't know!

Right now my son is very frustrated. My husband and I are frustrated. Sam thinks the doctors don't believe him when he tells them how much it hurts. We know how much it hurts; because we are feeling it with him. Right now he is very angry and mad that this happened to him. I know he's lashing out because of the pain. Damn... I'm mad that this happened to him. Why my kid? Scheuermann's is one of those unknown conditions that afflicts one in 250,000 teenagers between the ages of 14 and 18. That's .04% of the population. They can't attribute it to genetics, trauma or nutrition. It truly is a medical mystery WHY this spinal deformity happens to those who get it.
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I had the kyphosis too. It's dominant in males and of course I had to be one of the lucky females to get it. Anyway, I had an 87 degree curve. (the norm is around 38-45) My curve was bad enough I had to have surgery. I'm much better now. It took me a while to recover and my surgeon bad me wear a brace for 4 months. It's nice to be straight and tall. It was funny waking up and standing up for the first time, though. I had literally grown 3 inches over night and now I'm 6 feet tall. I still remember these tiny nurses trying to help me up. Anyway, I wish you luck with your son. He'll be fine. Whether he just needs to have phsical exercise, wear a brace, or have surgery. He'll get through it.
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Breeforeva~ thanks for your reply. Since my last post... we've seen the orthopaedic surgeon and my son was fitted with a Milwaukee brace. They said that he still has about a foot of growing to do yet. Right now he's 6'2". He's going to be one tall dude when this is over with!

He's having a hard time accepting the brace... but it's getting better. It's hard enough as an adult to have to accept things you cannot change; and even harder for teens I think. His pain has let up considerably.

Surgery still hasn't been ruled out ... it all depends on how he responds to the bracing. Hopefully he'll have a good response and this will all be behind him in a few years after he's reached skelatal maturity.

At least now we are a little more informed on the situation and understand the changes that he is going through; and understand that the time frame involved depends upon his growth rate. The first doctor that we saw had absolutely no bed side manner what so ever and really left us hanging with a lot of unanswered questions. Sam really didn't like him; and I don't think that helped the situation any. It just caused a lot of unneccessary frustration. The doctor even admitted to us that he never had a patient before with Scheuermanns. Everything is much better now that we sought the second opinion with a spinal team at a major hospital that is familiar with the condition.

Now we just wait and watch the growing process... and pray for a good outcome.
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hi there,i am from south australia,australia.. my daughter is almost 15 now and was diagnosed with scheurermanns kyposis in march 2004.. her degree of curve was 63% and so it was suggested she try physio and a boston/milwaukee brace which was hopefully going to over 18 mths correct her curve.. this did not happen and 2 months ago her curve has increased to 76%.. now she is waiting for full surgery to have rods inserted into her back to correct the curve.. it's a long operation and there are lots of things she won't be able to do but it is for the best as she will look like a hunchback by the time she's 20 if this procedure is not performed.. she is in constant pain and on medication 24/7.. if yr concerned get a second opinion but the operation is highly recommend if the degree of curve is higher thann 60%.. stacey

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Hey to everyone on the board here I was inpressed to see so many people here that were in some way touched by Shuermanns....I too was diagnosed with this dibilitating disease when I was 14 years old....I spent four years in braces, one being the Milwalkee Brace it was a very frustrating and difficult time for me and my family. I would hate the brace fitting because they would put me in this contreption and stretch me because the braces have to be fit perfectly to your body.. This illness , as it has been pointed out here, a very rare medical mystery. I lived in a very rural area and doctors would blame it my hunched back on the fact that I needed physical therapy and that I just needed to stand up straighter...My dad would get very frustrated and say you know standing up straight is not something one needs to be conscious of. It should just be automatic like breathing or your heart beating...I spent years bouncing from doctor to doctor one being three hours from our home and then he moved cross country so I was referred to another doctor 4 and 1/2 hours from home. This hospital was one of the best hospitals on the east coast and was really trully a life saver. Alfred E.I. Dupont Nemours Foundation in Wilmington Deleware was a wonderful place it was a children's Hospital and I was lucky because I was 17 when I finally had my spinal fusion surgery and they still followed up with me until I was 18 because I was a child when I first went there. Being a teen with this disease is really hard I think more so for a female because there is so so much is put on teen females and their physical appearance. I was teased and harrassed in school and told I just needed to deal with the harrassment I spent many days in tears and my self esteem was totally destroyed I dealt with so much emotional pain as a result of this illness I felt like a freak was angry at God for making me this way I fell into a deep depression and used food as a crutch for much of my pain. Now looking back I wouldn't change a moment of what I went through because it has shaped me and made me stronger. I would love to share my story with anyone who is willing to listen and I am finding you all very helpful here I am learning more and more about this illness at the time it was ruining my life it seemed I tried to block out what it was doing to me....I never dealt with it...went through all the motions to get me through and that was it I wouldn't talk about it after my surgery.....I had a 90% bend in my back, one of the worst cases every seen. In fact i was used as a text book case by one of the doctors becasue the hospital where I had my surgery was a teaching hospital. I was baffling doctors and it wasn't fully known how bad my condition had gotten until the surgery was actually preformed. I may seem like I am bouncing around here and for that I am sorry...Before my surgery I was told I may be in a wheelchair on a permanent basis by the time i was 30...telling a 17 year old that is sooo scary let me tell you...I was told I may need surgery I may not so I can relate to the not knowing that was mentioned. It is so scary living in the unknown. I was having breathing problems that were misdiagnosed for asthma....when in fact my back was hunching so far forward I was collasping in on vital internal organs. I can not say how many countless X-rays and MRI's I have had but it is so hard to weed something out from an X-ray... But to make a long story short I had my surgery It is was called a Posterior/ Anterior CD Rod Instrumentation Spinal Fusion so much technical junk I know...I now have two stainless steel rods in my spine and a rib and partial hip bone removed all fused in to my back.....I still live with pain and muscle spasms and all the scars I have the memories of being in a full body cast for 6 months post surgery and braces 23 hours a day pre surgery for 4 years.....I think I am much better now but there are days it really hurts alot....I just wanted to share my story and I hope i can help in some way I know what you are all going through and how frustrating this all can be....but do not let it wound your spirit....I am here if anyone needs me.... please feel free to e-mail me at _[removed]_ if you need something or just want to talk I may not be able to offer medical advice as much as just moral support and sharing my knowlege through my own experience sometimes that can be our best teacher.....I also have a myspace account and AOL messanger as well as Yahoo I will leave the messanger for you just look up the e-mail for my myspace account:) Good Luck and Blessings to all of you:)

Love and Blessings.
Chrissy
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My 16 year old son has been in a Milwaukee brace for scheuermann's disease for almost 3 years. he was first diagnosed with a curve of 66 degrees.In his brace he has been measuring around 59 degrees. At 6'3" he is officially done growing and is now wearing the brace 12 hours a day.It has been quite a journey. The brace was horribly uncomfortable and expensive, since insurance only partially paid for it. Also, we had to have a whole new brace after a year because we changed doctors and everyone agreed that the first brace was ill-fitting.(Why we didn't go to Gillete Children's in the first place instead of a 'spine clinic,' I don't know. I would recommend all to find a hospital or clinic with an in-house orthotics.At the first place the orthopedic doctor and the brace fitter never were in the same building together and never even communicated except thru me. "Do you think the neck should be raised"the brace fitter would ask me!)
It was a tough 3 years. My son went from an outgoing free spirit to a very shy quiet guy. The kids at his middle school and high school were not too mean, but just recently he has shared some of the comments kids have made.Usually he would just laugh them off. His nickname in one class was "noodle" brcause his back is shaped elbow macaroni.
He spent alot of the early brace time in front of his computer. He loves on-line games, and it was something he could do to take his mind off the brace. What really helped him from totally retreating was joining the swim team. he is the worst swimmer on the Varsity team but has a rare coach who treats him like one of his best swimmers. In fact, the aquatics director has had him teaching swim lessons and he is now a certified lifeguard.
What the future hold is uncertain. We will see what degree his back finishes at and if he needs surgery.After spending time in the orthotics dept. at Children's hospital my son has realized that his disease isn't so bad, in fact one day he told me he was lucky to only have sheuermann's.
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My son is 25 years old and for the last 4 years he has had pains in his shoulders, knees and back. We have gone to orthopedics, he did several MRI's, XR's and in February he had surgery for a thorn ligament in his hip. After the surgery,we hoped that he was over his agony, but the pains continued and now the rheumatologist say that he has Sheuermann's disease. Can someone help me please? Isn't this disease an adolescent disease? has anyone had this kind of experience, and what treatment did you have. I would appreciate your reply.

Thank ou very much
Eva McDonald
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We are from Australia too, our nearest specialist is 3500kms from us and we only see him every 6mths at a clinic! My son who's now 16 has been dealing with this for the past couple of years, he has worn the brace 23hrs a day for 18 mths, and has since stopped wearing it as they (the docs) think his growing has slowed right down now, and it will have minimal effect from now on. I think they wanted to see how he'd hold up without it too. His kyphosis corrected somewhat whilst wearing the brace, but now the brace is off, it has reverted and even worsened. They started talking surgery at our last 6mth checkup. He also has a scoliotic curve to match. He cannot bend his back to lean forward at all, as all the ligaments are so tight. His knees are maltracking and quite often painful, docs say he needs to stretch etc, but this causes chronic back pain, dont know if its doing good or doing more damage!

He has developed nasty strechmarks up near the centre of his back, either side of his spine, much worse on the left. He (my son) wants to put surgery off till 'new technology' comes out... but i've read they heal and have much better prognosis if they operate when they're younger?!
He is chronically tired all the time and has had dodgy calcium serum levels on a couple of recent tests, (hope that doesnt mean his bones are leaching calcium too now... argh!!! - awaiting more tests over a period of time to summerize wots going on there...)

Has anyone had the ligaments loosened off somehow, does this help? As it wouldnt carry the same risks as full-on back surgery (would it?), and if there's such a thing, we could do that while we play the wait n see game. This would lessen the amount of pressure bearing down on his spine, while those last couple of cms are grown out?! Wonder if that'd work in the meantime...

Any ideas?
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omg that is so scary!! Right now i have 3 bulged discs and my doctor say i might have shuermanns disease, so now i have to get a cat-scan. I have already had a mri and im taking darvocet and skelaxin for the pain. I was a work related injury :'(
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I have a 12 almost 13 year old daughter with Scheuermann's kyphosis and a mild degree scholosis. She wears a brace for 23 hours per day for the next two years. I wish you alot of luck in your sons treatments. Dee
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Hello there:
I am a 25 year old female who was just diagnosed with this condition. Surgery seems to be the only option, since I have stopped growing. Can anyone share their experiences with me? I feel the only true way to make this decision is to talk to people who have gone through it. I have a desk job that I will need to return to post-surgery. I do not have any children, but hope to in future years! Any advise/experience you can share would be greatly appreciated!
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