Scheuermann's Disease Support Group

I did post a general discussion thinking it was an introduction and personal stories one...d'oh!

anyways, I'm heather, I live in manchester england. I've had scheuermann's for four years now. I haven't ever been allowed surgery because my doctor said it could increase the pain and since it only measures 71 degrees they don't want to risk surgery. I have a hyper lumbar lordosis as a result too. i do hate the look of my back-my neck sticks out, my shoulder blades stick out and i look like i have awful posture. apparently the kyphosis in my back is higher up than the 'average' but its a curve all the same i had two boston braces made. I wore the first for two months then the second for four (the second was awesome, it had leopard print all over it!) but because i'm skinny my hips were awfully bruised and since the brace encased my chest i felt like i was suffocating :') it aggravated the pain too so they decided to stop me wearing them my curve hasn't changed since i've had it, it seemed to have miraculously over night hunched over and i have never seen a gradual difference i now have pain killers and acupuncture to manage my pain after things like cortisone injections, capsaicin creams, pregabalin (evil drug btw!) a tens machine amongst many other things. i currently have solpadol and tramadol if i need. sorry this is so long. I so excited to find a place like this!

welcome to the group! you will find that we are all awesome people and know exactly what you are going thru! how old are you? how many doctors/surgeons have you gone to for other opinions? alot of us here have exhausted all other options and had the surgery done. i had my surgery done april of 2010 and i have not regretted it a bit. my curve at the time of surgery was 90 dergees and the pain had gotten to be unbearable. surgery is a big decision and needs to be looked into thouroughly. it is not garanteed to get rid of all the pain. in my case it did relieve alot of pain but i still have painful days but for the most part i consider it a success. again welcome to the group and im sure no one here would have a problem with you PMing them qith questions. my name is blair and its great that you found us!

haha that's awesome i'm 17, 18 this year. I've seen a couple of doctors. the issue for me is primarily just pain,not really the cosmetic side of it, like i won't ever love how my back looks but i'm learning to accept it's part of me so thats okay.one doctor said the surgery could worsen the pain, another said i may not get amazing cosmetic results but i could have less pain and it would be a gamble...i didn't really understand at the time and i've just pushed the thought to the back of my mind but i do think about it. i think since it's mostly been the pain thing and theres no guarantee of it going away they are reluctant to let me undergo surgery. and i don't know what it is like in the states but since i turned seventeen i don't get appointments to see consultants who know how to help like i used to. all i get is pain management and sometimes that's at a push ahaha oh and i don't get physio either which sucks. that's the thing about the nhs, once you reach a certain age they stop caring as much ahaha anyways thanks for welcoming me to the group! it's good to know you had success with it, i'm so pleased for you!

Maybe you're not seeing the right kind of doctor? It's a real hassle trying to find a doctor here who specializes in spinal deformities and knows what they're talking about when it comes to SK. I had to see 4 surgeons before I was even officially diagnosed, the first three either didn't have enough knowledge about it to give an opinion or said that's just they way you were born, deal with it! Which is a horrible attitude to have. Physio doesn't really help much, for me it helped in the instant I was doing the exercises and stretches, but as soon as I stopped the pain came back and it was much worse. I don't really have much pain now after surgery, just every once in a while I have pain across my left shoulder blade. It's nothing like the pain I had before though.

Anyway, I hope you find some answers here. Feel free to vent any time, that's what we're here for haha.

maybe. i just don't seem to have access to doctors anymore though ah well. thanks for welcoming me. and cheers, i will hehe

you have no idea how ur story will match up wit all of us...it's just awesome that ur tryin to figure this out way earlier than most of us... i have had no back pain but akes...but totally worth the surgery to jus deal wit akes then severe vegetable state pain...I'm jus 8 weeks out and am feelin wonderful...hope to see ya on here more

i'm just interested i guess, it's cool cause i didn't know anybody with scheuermann's before this and now i realise i'm not alone and it's awesome i'm glad it's worked for you, thats really good! it's so lovely to hear other people have managed to find an option which suits them cause it gives everyone else hope and i will be on here more, it's a cool place best wishes

knowing that I wasn't alone in the world was the best thing that ever happened to me.

Ditto for me as well. I just wish everyone was a lot closer!

yeah that would be so cool!