Scheuermanns Disease: My Situation

I am so sorry to read about your painful experience and would just like to say that I can't possibly imagine how distressing it must be. I am an osteopath with a couple of patients with Sheurmanns. Honestly, I am able to give them a bit of relief with their achiness but it only lasts maybe a couple of weeks. Strong mobilisation of the whole area should help to ease it a little and I would recommend that you consider an osteopath as they really do work on the integration of the whole body. It may help with your pain although I do understand that it probably should have been done a long time ago in order for it to be fully effective.

Regards

Hi

My husband has scheuermanns disease too & at 38 he is beginning to suffer more than ever before.

We have only been together for 3yrs & I have only recently discovered that his condition has a name! so i have been researching alot!

I hope that you are feeling more positive (if thats possible) now. I have to say your post shocked me somewhat! I wont say I have been blind to the possibilities of having to care for him at a later stage, but Im hoping it will be a long time from now!

best wishes

Carol

hi im 19 and suffer from scheuermanns disease was diagnosed with it when i was 14, i really feel for you, my docters are useless because of my age can only be givin tramadol, some days i cant even get out of my bed its that sore, i hope you manage to find some help soon xx

Hi

I am a similar age I am 51 and have been unable to work for the last 20 years.

Sleeping was a major issue waking every 20-30mins to turn over when the pain in my ribs got too bad to sleep then eventually managing to fall asleep again. You start every day feeling tired miserable and in constant pain, I know the hell you are experiencing.

Now it may or may not help you, but 4 years ago I bought a memoryfoam mattress and since that day I now sleep almost the entire night through it has made a world of difference to me, of course I am still in pain but at least I am not worn out through lack of sleep as well.

I just wish someone was doing extensive research into this condition as both my children have it also my son was diagnosed at 10 years old my daughter at 13, I want better for them than the life it has forced on me, but apart from seeing a consultant about every 2 years to check on the conditions progress nothing is offered, they say its not hereditary so are we just really unlucky, I dont think so and just wish for more support.

Meds are my only option I cannot tolerate Morphine makes me violently ill so I get little relief from the drugs I can take.

Surgery has been suggested but on the advice of 3 different ortho surgeons I have declined it, as they think it would be very dangerous very unsuccessful and would probably put me straight in a wheelchair or at worse leave me paralysed from the neck down IF I survived the surgery itself.

The future is bleak so basically I just take each day as it comes and enjoy doing as much as I can, I push myself constantly then spend hours trying to get the pain under control again, but if i just sit their moping I am going to be worse off so I grit my teeth and go for it, I love gardening and walking (although not far) and refuse to stop but yes the pain is horrendous but its going to be there anyway.

Go for the surgery....

I got it diagnosed about 12 years ago. I am now 39.

I had major hip and back pain right through high school making me miss school and be restricted on my physical activities. I continued to get worse and my GP just kept trying to 'crack it back'.

Then finding a good spinal consultant my life changed. I finally got diagnosed, yes it took time but even after the initial spine operation ( they inserted two rods from the top of my shoulders to the upper part of my lower back, fused some discs and inserted some "false" disks, ) it was amazing. Don't get me wrong, still had a lot of pain but nothing like it was, and I finally stood tall. My wife told me all the time to remember how I was and remember how much better I am.

My only problem now...

The first holiday we took after I felt my best for years, we were just outside Newquay (Cornwall,UK) stopped at a junction when a speeding van came around a bend behind us and hit us at over 60MPH smashing us across the road, through a wall and some road signs and into the side of someone's house.

The crash ripped all the metal work (screws) out of my spine and snapped my spine in more than 7 places. Devastating.

But being the stubborn patient I am , after two operations on the spine in my neck ( two disks had snapped and one was crushing the spinal chord ), and three operations on my back, I am back up walking around. I still take morphine and a lot of other medication on a daily basis, but from the outside, I look like nothing is wrong. Which really boosts how I feel about myself. I have two fantastic and caring kids that help as well as a loving wife. I have another operation due soon, which is hopefully going to be the last.

But all the way through all of this. In all the pain and discomfort I have experienced. Nothing, nothing at all, would make me wish at the beginning that I never went for surgery.

Before surgery, as well as the curve, my spine began to crumble. So I was constantly having to try to lie down over my buckles, or bent weirdly, to pop slipped disks back in myself. They were popping every day, sometimes every hour. The initial operation stopped all that, stopped the discomfort and a lot of the pain, and made me stand tall and look forward to life rather than wish for the day it would end. Which I did seem to wish for an awful lot.

I have read its hereditary so am about to get my son checked. We got told to leave it until he was 11 to get him checked.

My heart felt sympathy goes to you all and to everyone living with this problem and those like it.

I got diagnosed with scheurmanns, spondulitis, severe arthritis in the base of the spine, and "another" causing the spine to crumble.

Finally, after my moan to you, I simply meant to write " please have the operation, mine changed my life so much for the better I cannot express to you how much better I am now, both physically and especially mentally. I used to feel such a burden to everyone around me, i wished for the end to come and stop the pain. But, thanks to my incredible spine consultant, I can now look to the future with head held high and enjoy it with my family.

I hope this all makes sense as I have waffled on but have never written about this before and just got carried away !

Take care everyone and I hope you all get to a point where you too have less pain and a brighter future ahead of you.

Hi all,

It's been a while since I made my last post (I'm 55 this year - 2013). Scheuermann's isn't hereditary (I checked when I was first diagnosed), and fortunately our grown-up 'kids' and grand children aren't affected, though the physical pain is now totally unbearable and no matter how much Morphine and other oral non-effective rubbish I take, it just has no affect any more and I'm now getting chronic neck and headache as well (like extreme migraine and whiplash).

Unless someone knows someone somewhere that would look at me, there is no surgery that any of the consultants have said I can have for this condition that they will perform and I find myself on life's scrapheap. My wife is beside herself with worry as she can't help me and has to watch me suffer on a daily basis. I'm ready to take all my meds, a bottle of alcohol (I've been teetotal for 3 years due to taking the Morphine and other medications), drive to my parents grave and end it all there as there I simply cannot take it any more. If I were a dog, the Vet would've put me to sleep to 'avoid further suffering'. So much for modern medicine and compassion eh? I'm not sure that I'll be around beyond my 55th birthday in August. Additionally, my knees are in chronic pain now as well, and standing or walking is a nightmare. I would happily be put under semi-permanent sedation than to be expected to live like this as it's no longer life . . it's a very, very, very painful existence that no-one ought to be made to suffer. I must've been a really bad person in any previous life to deserve this as my penance.

I've signed the Donor Register so the medical fraternity might learn something from my cold rotting carcass, but I'm begging anyone that knows of anyone anywhere that could at least stop this from deteriorating further and/or help me to live whatever life I may have with some sort of purpose and meaning and to become as pain free as possible, I would trade almost anything just to be pain free. I've barely left the house in 3 years.

Please, if anyone can help, I'm at the end of my tether and ability to cope with the pain and suffering, both for myself and for my family. I contacted Stoke Mandeville Hospital, but they said they couldn't help because they deal with spinal injuries only.

For Mattrys, who is your spinal consultant and can you ask if they would be prepared to look at my case? Sorry for the post being so morbid, but I really can't convey it any other way. It's my last plea for help.

Hi again, firstly glad to see your kids are fine. I've had such contradicting information about hereditary or not.

I feel so sorry for you not being sorted before now. Previous to any operation I would collapse all the time both in pain, or by having nerves compressed and then getting sharp pains and numbness through both neck and legs. As bad as my back got, I think my neck far superseded it. But the operations have made a huge difference to me.

My consultant is Mr Paul Rhys Davies. He operates under NHS at Llandough Hospital, Penarth (right next to Cardiff) and privately at the Vale Hospital ( near Llantrisant ). I have had operations by him and his registrars and always felt such a benefit after it. The pain in neck and back got so severe I could not sit or stand for more than 15 mins at a time, and couldn't lie down. It was a nightmare. Many many times I wanted to end it but after the operation I was up and walking around after just 24 hours.

My wife came in to visit and I met her in the cafe ! It was amazing. I then had an operation on the neck which sorted the rest out. My spinal chord had got crushed by a disk collapsing and apart from pain was causing a serverly sharp pain through my neck and head and felt like a soldering iron in the back if the eye. But it has stopped. Just a pity I had a crash that messed it all up.

I will ring Paul's secretary for you today to see how you can get seen quickly.

My father has a similar condition as in under a new consultant and really recommends him. He has also had a few spine operations and a knee operation. The new consultants lists are alot shorter. ( I think he was one of Paul's registrars ). I will find out his name and repost.

I'll keep my fingers crossed you can get sorted, and will get back as quick as I can with the information.

Take care.

Hi all

Similar situation Pirate I am 54 diagnosed with SD late @31 unfortunately both my children have inherited it so guess I they are just unlucky !

Mr Paul Rhys Davies was also my consultant and after many years it was suggested I should have spinal stabilisation surgery so I agreed after holding out for many years (this was 4 years ago) While on the waiting list for the surgery I was called in to see another consultant who after reviweing my MRIs and other info spent an hour with me explaining why in his opinion I should not have the surgery - he felt the risks in my case were very high and the outcome would not be successful due to the excessive neck curvature he told me 'the rods would not hold and would burst out of the back of my skull' delightful thought heh ! obviously requiring further surgery with higher risks until they ran out of bone to reattach them. Its apparently further complicated as I have a tumor (haemangioma) inside T11 which woud make me prone to a bleed into the spinal cord heightening the risk of paralysis.

I was told to think it over and return in 6 months. On my return visit I saw another consultant who agreed that I was not suitable for the surgery which coincidentely was the exact information I had been given 20 years earlier by my very first consultant at the Spinal Unit in Nuffield Oxford ( when I lived there).

With all this new information I declined the surgery and now exist on pain relief which is being steadily increased all the time.

It has been 4 years since I saw Mr Paul Rhys Davies in Llandough and have asked to be referred back again to discuss my options again - who knows maybe there is something that can be done now.

I do feel for you as I too just want some damn relief from this chronic pain and limitations put on my life by it..

Ohh yes to add insult to injury ATOS declared me 'Fit for work' ! so add all the stress being stripped of my benefits brings while I appeal this decision with my GPs full support.

Life really does suck sometimes but then I look at my kids who despite having SD are both at Uni and doing well and are happy hopefully the future will hold better treatments and results for them.

Just for info my son was diagnosed at 10 and my daughter at 13.

I too have scheuermanns disease, was diagnosed as a teenager then it, I think went into remission, if that's what you would call it. I started having backache again at 30 was x rayed and yes there it was again. I am now 50 and it has got a lot worse in the past 20 years. I have developed sciatica, degenerative disc disease, cervical spondolosis and costal chondritis where the ribs attach the breastbone. My curvature isn't as severe as it could probably get but I have helped myself there with braces and standing as straight as possible. I am taking morphine morning and night and also 3 times during the day. Amitryptylline is one of the best medications for the condition and this has recently been doubled as the pain has become more severe. It does knock me out so Im dopey for half the day as well but I'm not bothered about that, I would rather be in less pain. I'm also on pregabalin which I found better than gabapentin (lyrica) it would be worth a try for the other sufferers. I take diclofenac but have to take omeprazole for the stomach problems. I am on paracetamol too, and beta blockers as I have heart palpitations. I'm also on HRT for peri menopause and to stop osteoporosis which is more susceptible in people with scheuermanns. I take fluoxetine for depression and tolterdine for bladder problems as I had a prolapse 5 years ago as my bladder had become 1 1/2 times the size it should have been as I barely needed to pass urine the urge was not there I think due to medication.

I have been advised surgery would not be possible due to the degenerated discs but I have had my vertebraes realigned by a bonesetter There were 4 thoracic and cervical vertebraes out and lumbar 3 and 4 which are the ones which cause the terrible sciatica which has now appeared in the underside of my right foot which is agony. He is a very highly regarded gentleman who has helped people all over the world, many top celebrities who could get no relief from other therapies they tried. This man is in Scotland which was fine for me just a 2 hour drive but I don't know the whereabouts of the other sufferers,. I would gladly give them his telephone number but must stress he deals with the nerve pain associated from the back and not joint pain but please get in touch with me if you would be interested in talking to him. It would be good to have a scheuermanns disease self help group in the UK but as said before don't know where the other sufferers live.

I have a big worry coming up the ATOS questionnaire as I'm on incapacity benefit, I'm terrified of this. And as the last person said they have been declared fit for work and having to appeal. Do you not get an assessment rate prior to your appeal happening? Also, I read that it can take a year to get your appeal heard but 70% of people are having their benefits returned then so I assume they would then backdate your money. Any help regarding answers would be gratefully appreciated as they will not believe I have scheuermanns disease as my own doctor didn't even believe it until she saw my x rays!! Many thanks

Hello everyone. I just read all your above comments and I sympathise greatly with you all.

I have a condition in my lower back, called scoliosis. It is called a curvature of the spine I know my mother had it but I did not have myself diagnosed with it, although I was in plaster as a baby apparantly, they didn't investigate any further! Anyway all through the years I have had back pain on and off, and certainly as I have got alot older After being told continuously by previous doctors, that I Had sciatica trapped nerves in my lower back. Well they were wrong! Just recently I went to an osteopath through my new doctor when I moved again, only to find on my diagnosis that they found I have sciosis curvature in my lower spine, with 1 cm left leg shorter than the right! Anyway I have started therapy classes at my local hospital. I went for my first session yesterday. I have found it very helpful indeed. I learnt about pain how to manage it how to understand about it, and also why it has happened! We also did soft exercises and the breathing exercise was brilliant mind you apart from being in touch with your body lying down you can easily fall asleep! But I felt refreshed and much better in myself only after one session of it. But I do recommend meditation of the body, you really get in touch with yourself in your body you become the controller using your brain in a much better focused way in helping your pain. It really does help! I am also going to do Pilates too so watch my comments next time im on here, I will answer your questions about anything on my progress. Thanks for reading my post huggs to you all bless you x

I am 54 years old and have been suffering with this disease since I was in my early 30s. I was initially diagnosed with sciatica, though no one could tell me why I developed it. I was diagnosed with arthritis in my spine at 27. The legs started hurting long before the back did but when the back pain started, it was relentless. Still is. I understand what you are all going through.

After declining both surgery and pain killers, I found the best solution for me is weight lifting. I use barbells and dumbbells, rather than machines. The machines are fine to begin with but they restrict your movement and you don't get the most workout of all muscles. The free weights work more muscles more effectively. Hire a personal trainer before you begin and start with an empty bar. The goal is not to become a body builder but to increase the strength of your muscles, which will help to alleviate the pain caused by the bones. As you continue, slowly add weight to the bar.

The stronger your muscles, the more your bones will maintain their properly alignment, the less pain you'll feel. It's the same concept that makes the memory foam mattress work so well during sleep.

I hope this information is helpful to anyone else who is suffering with this disease.