Scheuermann's Disease...can i cure it?

[gloworm]

I was diagnosed with a spinal condition called old Scheuermann's Disease a few years ago. I have seen numerous GP's, nurses, physiotherapists and a rheumatology consultant with very limited success
in very simple terms, some of the discs in the middle of my spine are crushed, they are wedge-shaped instead of rectangular-shaped. So basically my spine is curved more than it should be.

Aparently it is something that could only have been cured if it had been treated when I was about 12ys. Even though my mum complained to GP a few times in arly childhood he said there was definatly nothing wrong with me and I just had bad posture! Anyway over 30yrs ago in rural Ireland my mum just had to accept this.

After 2 pregnancies I no feel I will never be able to stand up straight, go for long periods without excruitating backpain and associated migraines. It restricts my day-to-day activities soooo much.

I bend at the knees, dont lift anything remotly heavy etc etc.
I take glucosamine sulphate and fish oil which definatly help, i'm not in nearly so much pain these days.

What I now need is someway of reversing whats happened, no one seems to know if this is even possible or is it something I have to live with.
I searched the web and can only find info on children/teens where the body has not yet finished growing and so treatment is different.

Do you have Scheuermann's Disease or know anything about it? Do you know how to improve condition?

Thanks for anything in advance

[gloworm]

bump

[Jimjams]

Have you heard of something called proflavanol? It helps with arthritis and those type of conditions. I have no idea whether it would be appropriate for this- but may be able to find out. If you are interested contact me via another talker and I can email you some information about it/

[gloworm]

thanks jimjams, am more interested in something physical (the glucosamine is pretty good for the inflammation/pain side of things). i suppose i'm thinking along the lines of exercises, stretches, etc...the physiotherapist here is not great and there is a year and half waiting list .

briefy what is the proflavanol?

[Jimjams]

hi proflavanol is an antioxidant but I hadn't remembered what I read correctly.

Just looked up the information I have from an American doctor who specialises in nutritional medicine. He recommends proflavanol, but I had remembered incorrectly- he recommends it is taken with something called procosa (which is the important thing for the joints). It will be similar to your glucosamine though as it contains glucosamine, manganese, vitamin C and silicon. Supposedly taking these together is more effective than glucosamine by itself.

Could you afford to pay for a private session with a phsyio? compared to people like OT's they are quite cheap and one session may be enough to get the information and exercises you need.

Do you have any sort of support belt or anything?

[gloworm]

i'm already taking all those other things you mentioned!

not much chance of private anything as i live in the middle of nowhere .
i suppose i'll just have to book with physio and wait

maybe a physiotherapist will turn up on MN??

[Jimjams]

ahh- well its good to hear its helping I'll recommend it to others.

Have a search for a physio anyway- you never know. I live in deepest darkest Devon and have found the most amazing fantastic private autism specialist speech therapist ever. I thought we'd be stuffed moving down here. Often you can find physios attached to health centres- Might be worth checking in your nearest town.

[Tissy]

gloworm, depending on how bad the Scheuermann's disease is(in terms of rigidity and angles), there may be some treatment available, but you would need to see an Orthopaedic Surgeon who specialises in spinal deformity( not likely to be found outside a big city unless on holiday ). Physiotherapy is not likely to make a lot of difference to the shape of your spine, but may ease some of the discomfort.

[Spod]

gloworm.... i know an excellent spinal surgeon in london, but i dont know what scheuermann's disease is so i dont know if surgery is appropriate.. but he is the only person in the country to perform a procedure called IDET (Intral-discal electro therapy... i think) it is designed to repair disk damage... my dh has had it... it helped a little, in his case not a cure for the problem, but for many it has been... dh and i both have extensive histories of back pain so i can sympathise with you, its awful isnt it. The surgeon i know performed a fusion on my lower spine which did improve my problem... I would be happy to pass on his details if you want.. contact me via another talker.... Spod.

[Spod]

i meant, contct me vai 'contact another talker' !!

[Spod]

that should be 'via'...... i will put the wine away now

[Lisa78]

gloworm - try St James teaching hospital in Leeds too. They have some pioneering spinal surgery going on now

[robinw]

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[HelloMama]

I have Scheuermann's Disease myself and had it diagnosed when i was about 14 years old. The only treatment i had when I was that age was 2 sessions of physiotherapy which didn't really do much. There was talk of surgery, but apparently it is really drastic so I wasn't advised to have it. I did have bad back ache when I was younger and now I have about 2-3 fused vertibrae in my thoracic spine (the middle of your back). My back curves out slightly and I have no movement in this area so I can't touch my toes and have limited flexibility for things like yoga etc.

I no longer have any problems with back pain, although since I have been pregnant (I'm 34 weeks now) I have had lower back pain, which I've been told is my lumber spine (the lower back) over-compensating for my thoracic spine.

Long story short, I would advise you to go to an osteopath. I have been seeing one since I was pregnant (recommended by a friend and my midwife) and it has been amazing! They sort out malalignments, muscle problems and alsorts, it is so brilliant and I wish I had seen one before I got pregnant. They also deal with back pain which causes headaches / migraines / neck problems. They have been able to do a lot of work on both my lumbar and thoracic spine and I have a lot more movement and flexibility.

If you want more information, please email me!

[gloworm]

thanks for all your information everyone.

hellomama, i will contact you when I have more time, we're in the process of trying to buy our first house at the moment, so not much free time.
I definatly want to get my back sorted this year as we dont plan on having any more children.
by the way, do you plan on having an epidural...you will need to tell anestheticist about your back as the place were the needle has to go in is quite narrow because of spine curving. it took almost an hour for them to get the needle in my back , and with second baby i ended up with general. i had section though, so hopefully you wont have this problem...just thought i should warn you.

[sistersister]

My fella has very bad back pain due to Scheuermann's and he finds pilates helps control the pain

[Milkshake7]

This might be helpful, in this site somebody has asked a similar question and there are people who have answered. I haven't looked at all of the answers but some may be helpful.

My dd and I both suffer with this, my dd's is very bad though. Her spine curved so much that when she was a teen her orthopedic surgeon decided to put her in a plaster jacket for four months, then in a plastic brace for nine months. Although it straightened her back and she grew several inches, her problems were not solved, the correction put pressure on her hips and now her hips keep dislocating. She is waiting to see the ortho again to see what they can do for her. She still suffers from a great deal of pain and she wishes that she hadn't had the jacket or the brace.

I think what I am trying to say is be very careful whatever route you decide to take, mine improved by exercise (strengthening the muscles surrounding my spine helped with the pain and my posture) but again be careful, see a physio and get advice.

[spacecadet]

hi, i was diagnosed with this at 22 after suffering dreadful, chest, upper thoracic spine pain and neck pain, i did have physio at the time but i now suffer really badly, after 4 children and several moree pregnancies i can hardly bend over some days and suffer from migraines etc, i did have acupuncture once which helps with the pain, what i have discovered is that this illness occurs in puberty and if diagnosed then, a back brace is usually worn to counteract the damage and curvature, sadly by the time adulthood is reached the desease has already done its damage, ive been told by a rhuemotologist that nothing can be done now. there are 2 types of this desease, sheurmans kyphosis of the spine and sheurmans which affects the lower spine, which do you have?

[spacecadet]

i also have been to pilates in the past and did find it beneficial, i just had to be careful what moves i did.

[duffersdoll]

Long time later but how are you getting on gloworm? I too have scheurmanns and about 14 yrs ago I started a new job and working on a laptop and then had a yr where I just couldn't sit for more than 10 mins. It was a nightmare. Eventually it was a physio who realised what I had and an xray confirmed it. I took up pilates after advice form the physio and it took about a year, plus daily exercises but I now can pretty much forget I have it.

[Pauliec93]

Duffersdol wow this is amazing, you are the first person in over 2 weeks of solid researching people's advice and opinions on this disease that has caused me chronic pain for over 6months. I don't remember what it feels like to not have pain. I have private messaged you please respond this is a godsend and you have given me some hope !!!! Thanks and hope to hear from you soon. Paul.