Bad Backs Discussion Forum

Hi

I was hoping someone could give me any advise. I was diagnosed with scheuermann's disease in my lumbar spine in october 2010. I have learned bits about it but nobody seems able to help me with treatment to ease the pain. I have tried strong painkillers but they make me sick, i was ok on anti inflamtries until recently when they gave me acute gastro. Ive had 2 lots of trigger point injections but they didnt help. Ive seen a chiropractor and have had no joy from that either. I am hoping to try for a baby next year but cant find any information from anyone who has scheuermann's in the lower spine.

If anyone has any advice or information i would really appriciate it

Many Thanks

Hi Mrs W

I was coming on here to find someone to talk to myself about Scheuermanns.

I'm 24 and I was diagnosed in 2010 also. After chatting with my consultant who offered me the fusion surgery, we decided to get having children out of the way before considering the surgery. So last December I had my daughter, Lily who is 1 next month.

My back was terrible duing my pregnancy and no amount of pain relief (which you are limited to during pregnancy), physio or bracing helped me.

I am giving you the reality of what I live with now because if anything can be done to help you before you have a child, get it done.

I have days where I cannot physically lift my daughter. I have days I can't even get out of bed. I push through the pain which i imagine makes it worse and it is just awful. Being a Mum is the best thing I have done, but the pregnancy and dealing with the disease as well as being responsible for a baby is so difficult.

I am due to see my consultant on Monday to discuss the surgery as I cannot consider how much pain I am going to be in 10 years time and have decided that it is time I got myself sorted.

I hope it works out for you. I love my daughter to pieces but I wish so much I had the body of a normal 24 year old to be able to pick her up and run around with her and roll on the floor with her. I push through my pain to do these things but she sees me cry with pain, and I feel bad putting her and my husband through that.

Blessings

Lilys Mum x

i have scheuermann,s disease had since i was nearly 16 im now 38 have a spinal fussion
had them removed now waiting to have surgery done again i have the progressive form you want to know what happens i can tell you
severe chest pain constant back ache which you will get co-codamol from doctors your walking gets harder as cant breath due to compression on your chest had 2 heart attacks your partner thinks your going to die most days as you look as you might ,your doctors think its all in your head as you cant have all the symptoms as you give i spent the last 2 years trying to get help as still in pain i regreat having surgery but i know i needed it,i know i need it now any other help i can give message me

I was diagnosed with Scheuermans when I was 15 and was in agony till I stopped growing at 18. Doctors would not decide my treatment until I stopped growing and had regular xrays to monitor my progress. I was too given strong pain killer and anti-imflamatory pills that gave me acid reflux issues which caused me to develop 12 cavities in the space of 12 months! I could do nothing (quiting a professional tennis career) that helped at the time, but when given the all clear to exercise, I went through back rehab and learned how to move and do things so not to hurt myself.
I became a fitness fanatic after realising that a strong core and a good running program kept me pain free.
After a slipped disc in 2007, Professionals tried to force me to have epidurals for the pain. I refused and found the things that helped me the most where accupuncture for the pain and also treatment called Prolotherapy. IT IS GENIUS AND SAVED MY LIFE!!!
Prolotherapy is when they inject a none invasive fluid into your ligaments in the damaged area therefore drawing blood and healing to the area. It helps to strengthen them. Its amazing.

I now have a twisted pelvis, a hermivertibrae at L4, a twist to my spine and severely damaged discs in in my lower spine. Also leg length problems and disfunctional sacroilliac joints. I have been told be specialists that with my problems I need to wait as long as possible before I have surgery. Due to the fact my discs are so damaged, fusion puts extra stress on my discs above and below the fusion, probably requiring another fusion shortly after the first.

I am now 21 weeks pregnant and searching for advise or comfort. I cannot walk, sit, lay or do anything without pain. Sciatica in both legs, hip pain, constant muscle spasms, groin pain, achilles pain, sacroilliac pain, tail bone pain, knee pain and ti band pain. I was seeing a physiotherapist twice a week but they discharged me because there is nothing more they can do for me. I would suggest to anyone getting pregnant with this disease, do it as young as you can!
And be prepared for pain. I thought I was prepared, but I am such an active person normally the inability to do anything it killing me. If anyone with scheuermanns wants to chat, I would love too. I have never met anyone else with my issues and it would be nice to know I am not alone in this struggle.

Oh and do other people have to explain the conditions to doctors?? They don't even know whats wrong with me!!

Many thanks for all replies. I am reading them all and taking all of your advise and tips into consideration. Im happy ive found others that are in the same position in what we suffer from.

My gp doesnt do much and am now not on any pain relief apart from paracetamol. I am learning(slowly) to adapt my life to reduce pain. I am having good days and bad days. I havent been offered any surgury but to be honest i really dont think i would have it done, reading bits on the net about what i could have had done i dont think i would of had it.

Ttiggo-1 was this what you experienced when you were pregnant? Im sorry but it sounds awful.

Lilysmum - do you suffer with lower spine pain? I am also 24 and adjusting to life with pain has been hard and sill is. Would you recommend any tips for pregnancy?

Scheuermanns - I do agree that no one seems to know anything about it. I have done a pain management course and that didnt really touch on scheuermann's because it is so rare. If you want to chat/message that would be good, its nice tro know were not alone in this.

Mrs W 2011

Hi!
It is really cool to find someone in the same position! And yes would like to keep in contact, any info found on both parts would be helpful I think! I have never spoken with anyone with Scheuermanns and being one of the 5% of scheuermanns sufferers as you are with lumber effected scheuermanns, its actually really comforting in a way.
Well, as an update on my part, I'm 28 weeks along now.
I was so upset with my OBGYN, I had quite the heated discussion with her. Every single specialist I have EVER spoken with has said I have to have a C-Section. The damage I have to my discs and the risks to me and the baby because of my twisted pelvis are too great to even attempt delivery! (So far she is laying breach, I assume because of my physiology). My doc did not like "being told" and said I was grey area in the decision!
The following appointment I went too, she sent ANOTHER doc in to talk to me and he assumed from her notes that I had scoliosis and scheuermans in my thoracic (more common) and again I had to go through the whole story of events, doctors of past, problems that are unusual to my case, lumbar and pelvis problems. Why on earth would I get so heated if the issue was with the thoracic!?! Even people just with scoliosis in lumber don't often have issues with pregnancy, its the extra complication we have that makes it worse!
And all he had to say was "OH right, thats why you need the c-section!". AAARGH, ANNOYING!!.
I also since then have developed Sciatica in both legs with numbness in my feet, numbness of the coccyx area of my spine and saw a neurologist yesterday! He was soooooo awesome. He told me how to cope and manage through the pregnancy, a little better and how to minimize the chances of damage! All simple things but it was good to hear. He has agreed to take my phone calls whenever I need and will see me after the birth to access me further. He also wrote a summary to say only someone with experiance in my abnormalities should perform the epidural and that I must must have a c-Section!

Wow, A doctor who listens and knows his stuff!! Big up for Dr Nanavaty of suffolk VA.

Before you become pregnant, be as fit as you possibly can be! Develop yor core strength as much as possible and be prepared to be in pain. Unfortunately, its a reality and its better to be prepared for it.

Hi,

I am finally glad someone is willing to help you!! My doctor is hopeless!! I am overweight but always have been and isnt anything to do with my condition. But all she tells me is dont get pregnant because of my weight!! No help to do with scheuermann's desease at all!! I have tried all painkillers and anti inflamatories that she will give me but all have given me really bad side effects. She now has only given me paracetamol, and wont refer me to any other specialists!! Makes me so cross that because its a rare condition they no nothing about it. All i know about mine is that the vertebra at the bottom of my spine isnt formed right. I havent had any mention of pelvis area or discs. im thinking should i be worried about this???
I have found that ice works best applied every 2 hours for 20-30 mins at a time.

Also did you know that any fruit juices(orange juice etc) can make the pain and inflamation in the back worse?? I had no idea about this until advised by a chiropractor, when my pain had severly increased. I had had 1 glass of orange juice a day for a week and it had caused so much pain!!

I have spoken to chiropractors and physio therapists on a pain management cousre i did and they have said its no reason not to have a baby. I do expect my pain to increase a lot and will be asking for a lot of help during pregnancy if it happens. I am going to look into yoga for core strenthening activites i think. I have some help sheets and stories from a pain management course about dealing with pregnancy and parenthood with chronic back pain which i have found facsinating to read and very useful hints and tips.

Your new DR sounds wonderful!! May i ask how you found out about him? I keep doing searches for specialists but keep hitting a blocked wall, frustrating as it is i really do still want a child and thought id have yto have a c section.
Any tips or suggestions would be gratefully received!

Hi!

I am sure you are aware that weight will not help your condition, but if you have always been that weight then thats just you !!! What specialists have you seen? Have you recieved MRI or X-ray??
Do you know if it is a hermivertibrae or semi-hermivertibrae?? And also do you know if your curvature is corrected in your lower back or pelvis??
scheurrmans unfortunatly causes changing in the disc too, its one of the things that all suffers have to deal with. Degeneration and weekness of the disc's is not uncommon. I personally have changes in the disc's throughout the lumber and thoracic region which is one of the main causes of my MAJOR "slipped" disc back in 2007!
A certain amount of your pain may be because of athritis which is also increased with our issue with early onset. I think this may be why your chiropractor mentioned Orange Juice. There is some evidence to suggest that it increases pain, however, you always have to weigh up with everything is it worth the risk!?
Orange juice can also irritate the bowels and cause muscle psasm's "down there", you might just be sensitive to Orange juice, you never know.
Being dehydrated is a MASSIVE cause for my pain to increase. Its because the disc's get dehydrated.
Definatly like both Ice and heat for my back. A warm shower and a few stretches always feel good.
Also something that a lot of people don't know is 20 minutes is the time it takes for joints (any joint in the body) to start to stiffen up. The fluid that surround joints is actually more like Jelly, as it is warmed up it thins out and lubricates better. Try not to stay still for longer than that. Even if its just getting up and down a few times and twisting or bending. KEEP MOVING!!!
Yoga is good, or pilates, I like using my Gym ball the best.
Do you know what superman's and "dead bugs" are?? they are exercises for your core.

Do they do back rehab courses in your area? I did one 10 years ago and the information I gain from that really changed the way I live. It still does.

If you find it hard to sleep, consider antihistermines. They make you sleepy, you can take them with paracetamol and best of all they are not habit forming like codeine or any of those other hard core things!! Oh another thing to be aware of is anti-inflamatories are REALLY bad for your stomach. I was put on them for a number of years and ended up with an acid reflux issue and 12 nice new fillings!!! My mum is also a victim to anti inflamatories and is about to undergo sugery on her stomach because of the damage!

Wow that a lot of info or maybe blab!?

I have really been through the system alot. I am also a personal trainer, so if you want any specific help or advice. Just let me know!

Hi,

That is a lot of NEW information for me. Nobody has told me any of that! Feel like crying at all the information thats not been passed on. I havent seen any specialists :/ I went to see a orthopeadic triage nurse who sent me for an mri and he called me and told me what id got, and gave me a brief description. I havent even seen my mri. I feel like a right failure now. A chiropractor told me to ask about seeing an orthpeadic surgeon for information on ways to live with it but my gp said no.

Ive not heard of superman's and dead bugs sorry! I have thought about going to the gym b ut because i am off work i cant afford it

I am going to google back rehab though, thank you. I live in staffordshire and theres not much i can find in this area unfortunately. But i am really liking all the advise you are sharing, thank you very much. I just feel like im hitting a brick wall all the time.

Hi all!
I am stucked with similar problems too. I would like to know your conditions. Do you know your data from MRI's (characteristics, angles ... )? I have flat lumbar back (no lordosis from (L1-L5); at L2/L3 is even 5 deg. opposite - kyphosis. In thoraic part I have even formed lordosis; they have defined that I have opposite sagital curves:( Lumbar vertebraes are a little bit wedged.
Orhopedist defined - " rare lumbar scheuerman disease". He also said that my spine has only 50% movement of normal spine. Any force to extend this capability can result in pain.
Neurosurgeon asked me who is ill your family; I said no one. He said you have so genle, soft spine; badly weakened structures (bony part, ligaments etc). Have you eaten enough good food in your childhood? I said yes ...
I think I have this from severe rickets and wrong movement/baby handling (first years), completely wrong instructions. One FTH checked my bones and development 3 years ago and said it was uncured rickets.
Normally I was very sport active person (at least 2-3 a week) till 35. I found this mistake at 17 as I have compared my posture and movement to other guys. Signs before were also; pain and discomfort at sitting; at 8 once I couldnt stand straight with my spine ...
I am bad for 7 years now. Now discs are degenerated (L2-S1); the worse is almost flattened (L5-S1).
Older you are worse it is they say. I hope not:(
I hope that they will develope regeneration coctails for spine (discs) too, like stem cells. Muscles call pull everything but all this game destroyes other structures (discs, small joints).
I wish you all the best!

Here is one info:
http://www.understandspinesurgery.com/Articles/Read/-Lumbar-Scheuermann's-Disease

Lumbar Scheuermann's Disease

Article written by Joshua S Rovner, MD



When evaluating the cause of low back pain in adolescents, Lumbar Schueurmann's disease must be considered. Schuermann's disease produces an increased kyphosis (forward bend) in the spine. While the most common form of Scheuermann's disease occurs in the upper part of the spine (thoracic), Lumbar Scheuermann's only occurs in the lower segments of the spine (lumbar and thoracolumbar). Two forms of this disorder have been described, based on their radiographic features.

Type I or classic Lumbar Schuermann's disease has a hallmark wedging deformity of the vertebrae. Five degrees of anterior wedging (toward the front of the body) in three consecutive vertebrae is required to make the diagnosis. These findings are similar to what is seen in Thoracic Scheuermann's kyphosis except they are present in the lumbar spine. Symptoms of back pain are not required for this diagnosis as most of these patients are not symptomatic.

The true cause of classic Lumbar Schuerman's disease is not known. Theories include mechanical compression during growth, acute disc injuries, hormonal variations, and genetic factors as the cause. None of these theories have been proven.

Type II or atypical Lumbar Schuermann's disease does not have a wedging deformity of the vertebrae. Instead the vertebrae maintain their normal squared shape. The Lumbar spine, which normally has a gentle curve towards the back of the body (lordosis) becomes straightened. It occurs in athletic, mostly male teenagers who perform strenuous physical activity, especially heavy lifting. Patients normally present with low back pain and may have a mild scoliosis (spinal curvature). Evaluation includes x-rays which show several characteristic features. The endplates (hard bone at the top and bottom of each vertebral bone) which are normally flat and smooth become irregular. The space between the vertebrae becomes smaller than normal. Finally, the soft discs between the vertebrae bulge into the bone causing characteristic indentations called Schmorl's nodes.

A variant of Type II Lumbar Scheuermann's is known as "acute traumatic intraosseous disc herniation." This is characterized by a history of a traumatic event – usually a fall – and includes a fracture of the bony endplate with disc material herniating into the bone. These patients will have severe pain after their injury and can pinpoint when their symptoms began.

Treatment for all types of Lumbar Scheuermann's disease is symptomatic. Treatments include mild pain medicine, avoiding activities that worsen the pain, and bracing if necessary. This disease does not typically cause symptoms into adulthood and does not require surgical treatment.
***