Scheuermanns Disease: My Situation

Bones, joints and muscles
1

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.

2

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

3

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

4

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

5

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.

6

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.

7

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.

8

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.

9

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.

10

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

11

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

12

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.

13

Ahoy!

I'm very grateful for everyone's replies and comments.  My own situation is now in what I would best describe as 'crisis point'.  whilst I'm happy to openly discuss my personal confidential medical situation, I would like to know from those of say 45 years+ who are taking prescribed medications or are having a visiting nurse to administer intra-veinous pain medication whether it be a low grade morphine or perhaps the 5 star dia-morphine to post what oral and/or other medications you take, and what they are to include dosage, strength and frequency as I am banging my head against a brick wall with my pain consultant who keeps tinkering with the secondary medications and won't prescribe primary pain medications that is in keeping with the hyper-chronic pain I'm having to endure on a constant daily basis, and IMHO, this is both inhumane and in contradiction to the basic edict of providing appropriate and best care for their paitent.

In short, I'm living through Hell on a daily basis and the sympoms and areas affected are increasing and changing accordingly, and to cap it all off, I also have Syringomyelia (Syrix) in the spinal cord in the neck, and this is also presenting it's own set of secondary problems from Epileptic type fits, to hyper sensitive skin that will make to cry your eyes out in pain just from standing underneath a shower.  Yes, water droplets!  Now try and sleep when you can't even bear any pressure or touching of the skin.  anyone here been sleep deprived for over 3 years?  It's a nightmare situation, so my request regarding medication is so I can see if there's anything that I've not ben offered and can suggest to my own pain clinician.  My veterans agency welfare Officer has advised I write to both the Minister for Health and also the Minister for War Veterans which seems riduculous, but what choice is there?  even my own GP won't intervene citing that he's referred me to specialists and there's nothing he can do!  I thought your GP was your primary point of contact and if prescribed meds from a 3rd party weren't effective, he could at least prescribe a stronger, albeit on a temporary basis, medications(s), but also it would seem not to be the case.

Here's the kicker (this is the gospel truth).  when I was first diagnosed with scheuermann's I was 21 (nearly 22) and told that because I was over 19 that no surgical procedure could be done to either correct or stabilise it, and I believed that until October 2013 when after finding a specialist (Mr Marks) at the Royal Othopaedic Hospital Birmingham, and after an initial consultation with one of his underlings and subsequent MRI and X-Ray, I finally get to see him personally (I was in a really bad state that day), he says that in all the 20 years that he's been doing corrective surgery on Scheuermann's patients (note I said 20 years), that he'd never seen both Scheuermann's and Syringomyelia at the same time and that because of the Syrinx in the neck (he would have to go up to that point with his scaffolding etc) that he couldn't do the procedure (refer back to what I said about having epileptic type fits) so can you imagine what I felt when I was told that?  My scheuermann's could've been stabilised decades ago before the syrinx was ever present), and I was never offered surgery, but now I have the syrinx, unless that can be surgically treated by a procedure called a Shunt (or spinal tap), then I'm basically waiting to die as I can't take this any more!

The one thing the neck operation can do (if not successful) is to paralyse you from the neck down.  So what!  To do nothing isn't an option as this means concining me (and/or anyone in a similar situation) to the rest of their lives in agony, misery, mental, emotional and phyical torture.  Had I been your pet dog, the vet would've likely said that to prevent further suffering that the animal should be put to sleep.

Agree or not?  If you do, then it means that a human has less rights to appropriate care and treatment than your pet pooch or other animal.  Can this be right or justified?  No, of course it isn't.  Oh, and Mr Marks also noted that the majority of symptoms I was displaying were Neurological and were being caused by the syrinx.  He referred me to my local Neuro clinic.  Guess what?  I was referred to see the same guy I saw 3 years ago and no mention of any surgerical procedure or what symptoms to look out for and/or what to do if they ever presented.  Up until we found this out, whenever the brown stuff hit the fan, it was assumed it was the Scheuermann's and I was taken to a hospital that had no Neurological service or specialists.  Even when they knew I had a Syrinx in the spinal cord (it's a type of cyst that surrounds the spinal cord and interrupts the flow of spinal fluid and becuse it's being compressed, erroneous signals are being sent to parts of the body making it do and feel things of their own accord without there actually being a problem, which includes the Epileptic type fits and jerks), so after all this time, I could've been treated for my scheuermann's and I could be treated for the syrinx, but the neck has to be sorted before the spine can, and if it's decided they won't sort out the neck, then I'm well and truly [insert expletive here]!  This may sound dramatic (and it is), but I won't carry on 'existing' in this state because those who can, won't, and life is for living, not existing, let alone locked-in with inadequate pain relief and being denied proedures that can make this old warrior well again (I'll accept any risk to be rid of the pain).  Maybe I will have to make the ultimate sacrifice in order to save myself from further suffering and allow my family to gt on with their lives without the worry and concern for me, even though I will no doubt be consigned to eternal purgatory, nobody should be made to endure this when the medications are available as well as the procedures in order to help those in need.

I'm not after sympathy, but if you could list your meds as requested (I hope you will), it may be the only thing that might save me from myself.

Thank you for reading, and I hope this lengthy message finds you all in a much better state than miy own.

14

Ahoy Pirate,

Hi I have read your story and I can imagine what pain you are going through on a daily basis and I hope I never suffer the way you have.  I am 56 and just been diagnosed as having scheuermans disease.  I had no idea what it was apart from having excruciating pain, which the doctors and the ER doctors thought I just had a pinched nerve and will go away on its own.  I was sent to the physio and the exercises she asked me to do just made the pain worse so I stopped going,  The pain was that bad at one point I couldnt even get out of bed, I just couldnt move. The Ambulance crew were great and I had some gas and air, the stuff they use when you have a baby to control the pain.  that helped and the morphine they gave me in the ambulance. I went to gp and they kept giving me different meds which only managed to dehydrate and constipate me.  I went back to gp and saw a locum and begged him to send me to a specialist, he conceeded to send me to pain clinic, he just thought I was a neurotic menopausal woman and sending me to pain clinic would get me off their backs for a while.  I saw the pain doctor who gave me Tramadol SR 100mg 2 times daily and Gabapentin 600mg 2 times per day. That helped. He sent me for a mri scan and then he immediately passed me on to a spine specialist who then sent me for another mri scan  then a biopsy of the spine, which came back clear of infections. He said i had had an infection. I still complained of pain so I had another scan, in which he then told me I have scheuermans disease and the only thing that can stop the pain was a risky surgery involving screws, nuts bolts and rods, he pointed out that the surgery was very tricky and could paralyse me so to think carefully if I wanted to proceed I have for the moment declined the offer as I can just about tolerate the pain for now.  I did ask my GP if they could increase my pain meds as it is getting a bit uncomfortable they said they couldnt and I could only have morphine and would rather up the Gabapentin. The pain i mainly get is like someone is pushing my spine right between my shoulder blades and crushing my ribs and pushing in my breast bone. I dont sleep much either as when i lie down and my breathing slows down it feels like my ribs are trying to break free of my spine.  I have numbness in my arms (pinched nerve apparently) Doc gave me some amytripline 10mg I tab at night, its supposed to help me sleep, it did for 2 days.

It sounds like you are in a deep depression. I hope you have discussed these feelings with the doctor, maybe some talking therapy will help you. So I have rambled on too much you wanted to know what meds people of my age are on I'm taking Gabapentin 600mg x 2 daily, Tramadol SR 100mg x 2 daily   Amytripline 10mg 1 at night. This combination is no longer working satisfactorily for me. So I guess its the morphine or back to pain clinic to find out if there are any wonder drugs out there. I was even considering canabis at one point.  Some MS sufferers use it and say its helpful in controlling pain. Thanks for hanging in there and read my disjointed ramblings.

 

15

I am 16 and was diagnosed with scheuermanns disease 2 years ago. My doctor told me that it wouldnt be a problem and would stop being sore when I stop growing but now I am in constant agony. I have had to leave school and can no longer do any activities. I have had to pretty much give up my life. i take Tramadol to give me some pain relief but it does completely get rid of the pain and I can do no more when taking. Does anybody know how long it will be before I stop growing and when or if I will get better.

16

Hi there.

This disease sounds similar to scoliosis!

I've had to endure chronic pain in my back and legs!

I had a medial block done in my back at the beginning of this month, to stop some of the pain in the lower part of my back. I don't know to what extent it has helped me, but it has given me more mobility than I had before in my lower back. 

But alas this can only be a short period of comfort for most of the time.

I was seen at Chelsea and Westminster in Chelsea London.

They are very good there.

My consultant specialises in chronic back pain.

I did have a referral from my GP in the beginning, that's when I was diagnosed with scoliosis in my lower back.

Out of all the doctors I had seen in the past, it's taken my life time to find out what was wrong with my back!

But with age now, I'm also suffering with arthritis in my back too.

Lets hope that this procedure has sorted this pain problem out.

I hope some of you find pain relief in a procedure like my one, if you don't opt for surgery.

There are a few ways to have your back injected, without having evasive surgery.

God bless you all 🐥

17

Can I ask how old you were when you had the surgery and what the rehab involved?

18

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..

19

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!

20

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.