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Scheuermanns Disease: My Situation

Posted , 17 users are following.

Pirate
Pirate

I was diagosed with Scheurmanns when I was 22. I am now 50. Apart from being prescribed Oral Morphine and other 'pain killers', and having had CT and MRI scans, X-Rays, direct pain killing injections (including epidural), the condition continues to get ever more painful and progressively worse by the month.

Lower limb movement is now severely restricted and with the problem now affecting other areas (neck, shoulder and basically all of the spine), coupled with excessive fluid in the spinal cord in the neck, the pain is now virtually unbearable.

I cannot help myself any more and the medics/doctors seem unable or unwilling to help. The prognosis (as far as I'm concered) is that I will be left to suffer the pain, and the task of affording any personal help, left to my wife. I don't wan't this for her.

I'm thinking un-Christian thoughts, and do not know ho much more of this I can take. I wouldn't wish this condition on anyone, and even when I see a 'specialist', am basically left to my own devices.

So much for serving your country (I'm ex military) and advances in medical science. For some of us, these things mean little when you are trapped inside your own body racked in unimaginable pain. Loved ones can do nothing other than worry themselves sick over you. All I would ask for is the opportunity to be seen by a spinal spcialist, but my 'consultant' seems not to be willing to re-refer me.

For those of you who have this condition, my thoughts are very much with you. I just feel that I'm now on lifes scrap heap, and frankly there's not much reason to remain in my mortal form (family aside).

I hope that anyone reading this will be afforded far better medical aid than I have thus far. Internet research suggests that there are clinics than can help, so why won't the clinitians make the referral? I guess it's down to cost. My life isn't worth a damn. I've paid my dues (taxes) and served my time (military), now I'm on lifes scrap-heap and no-one gives a damn.

Sorry, I just get so angry at times. After months without a proper night's sleep, it gets to you. At 4am when the pain wakes you up, and during the day you wipe away the tears from the pain, enough becomes enough.

4 likes, 22 replies

22 Replies

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  • Newty
    Newty Pirate

    Posted

    After reading through this stream i  really feel for all that suffer with these horrible debilatating diseases.I have suffered with chronic pain for 20 years.Diagnosed with scheurmanns disease 25 years ago and thorasic syrinx from t3-t9 around 5 years ago after insisting on an mri scan.It takes years to get any sort of understanding of the condition as supposed specialists struggle to understand your symtoms.I have different symtoms developing almost weekly,some come and go but the constant neck,back and fatigue related symptoms don't go away and manage to control the mechanical pain with codeine and take gabapentin to address the neuralogical pain.I have been under the pain clinic at notts queens medical and also have regular appointments with a neurosurgeon do discuss mri results..I really feel for you all.Its an uphill battle with proffesionals and the likes of ATOS and now Maximus.Keep taking the antidepresants in the hope there is some new treatment discovered that can make ours lives a little more bearable..
  • kaztop48
    kaztop48 Pirate

    Posted

    so sorry to hear ur pain is so bad ,but never say sorry for being angry its way u copy with ya condition its nt your fault. i hope you get some pain relieve ,just keep nagging at them pirate!
  • artieeee
    artieeee Pirate

    Posted

    I'm so sorry to hear your situation. I'm 22 years old and suffer from this hell of a disease. I too feel like every day is a struggle, but you just have to take it a day at a time. I know it can be hard, but just think about how far you've made it already. Hope you get some much needed relief soon.

    As for my situation, I'm not exactly sure where my sheuermanns is. I do remember them saying that it was higher than they usually see. Every day is a struggle it seems. I have a lot of pain in my lower and mid back, along with a spine that seems to constantly pop and crack. I get so much (temporary) relief from cracking my bank, it's kind of like I HAVE to do it or else I'm in agonizing pain.

    I'm currently on gabapentin 600mg 6x a day, zanaflex 10mg 4x day, norco 10mg 4x day and mobic 15mg 1x day. Even with all of this it still feels like I'm living in hell. Can't sleep, can barely make it through my 10 or 12 hour work days and find it hard to even go out and about. If anyone had any advice or ideas, please let me know. I hope everyone gets better soon and the help they need.

  • Lawyer
    Lawyer Pirate

    Posted

    I pass on the following in case it gives hope or constructive suggestions.

    In summary I am 63 and never knew I had Scheurmann's kyphosis until last year; wrongly I had assumed it was caused by bad posture - in fact 'wedged' vertebrae which you can see on a MRI scan. The symptoms were pain in thoracic back and round the ribs. 

    The specialist told me it is not uncommon for people with Scheurman's to have sudden pain in older age. It is neuropathic: the nerve itself has gone wrong, not outside pressure on the nerve. It may or may not go in time.

    First we tried anti-inflammatories: useless and now I have duodenal ulcers; so be wary of them

    The next, and only, step up is opiate based medication. I did not want this, and we settled on Bu-Trans patches strongest; plus dihydrocodeine. I do not like having to take it, but now I can get about and drive, which I could not do beforehand; and great to sleep for more than 1 hour at a time.

    Also I have physiotherapy.

    I have nothing but praise for the doctors etc: brilliant.

    I can see I am much better off than many, and I am grateful for that. Hang in there everyone. Quasimodo rules. 

  • Shane1973
    Shane1973 Pirate

    Posted

    I really feel for you im 42 and had 2 MRI done the result of the first one was L3 disc badly damaged and the second MRI result shows that i have 4 damaged vertabrae endplates and they say i have Mild Scheuremanns disease im the same way in pain all the time lets just hope and pray 
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