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Old 19th June 2014, 11:21 AM
dandung86 dandung86 is offline
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Hi all, I have put off writing a post for some time. I now feel is the time to with with my experience of living with Kyphosis/ Scheuermann's disease.

I have graduated from University (lived the whole student life to the full), bought a house, got engaged, got a good job and best of all have a lovely baby daughter. From the outside I have the perfect life. It is inside that I am a different person. Psychologically I feel a bit of a mess, every part of my everyday life is controlled by my back and body. I am very self conscious, making sure I go places where I don't have to show my back off for too long. It is a constant daily battle that I don't think any others around me understand. I am in near constant pain with the disease but it has been that long living with it now I have got used to it. I have adapted my life to living with it, standing up straight as much as possible. So far I have 'winged it' as such.

I visited my local GP a couple of months ago who referred me for physio, I attended 1 session after an x-ray which confirmed my spine had fused. As such I was told they did not want to touch my back as anything physical may damage it.

So here we are to today, I have a physio follow up appointment with my GP next week. I had a call off him on Tuesday where he basically said don't get my hopes up, there is not much the hospital will be able to do, do I want a big scar from surgery, the NHS has had budget cuts, etc..I was n total shock!

I have attached pictures, all help or advice would be greatly appreciated. Thanks!











Last edited by dandung86; 19th June 2014 at 11:39 AM. Reason: Adding pictures
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  #2  
Old 22nd June 2014, 06:48 PM
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kezpet kezpet is offline
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Hi
Welcome to this amazing forum, there's a wealth of knowledge & support here.
Just wanted to say Hi and I totally understand where your coming from, your description of how your life is sounds just like how I was, I lived my life how I wanted & the pain became kind of normal?! I covered my curves up for 17 years after all that time id found ways of concealing/hiding my hump!!
Really hope your GP/Hospital do their best by you, don't take any fobbing off you deserve the best treatment available!! where abouts are you?
Kerry x
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34 year old, diagnosed @ 15 with 75* curve, progressed to double curve 110* and 60* by time of surgery.
2stage surgery under Mr Lehovsky @ Stanmore aged 32- Anterior 16th Jan 2013 and Posterior 22nd Jan 2013. Came home 30th Jan 2013. Fused t1-t12.
I am very thankful to Mr Lehovsky, Hanny registrar, Dr Inyaki and the rest of guys at RNOH Stanmore for taking such good care of me and giving me a chance to improve my life.
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Old 30th June 2014, 08:55 PM
KMaxwell KMaxwell is offline
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Welcome to the forum

I, too, have lived with Scheuermann’s kyphosis for a long while. In my teens I was braced and in my 20s turned down for surgery. I tried massage therapy, physio, chiro, acupressure, soft posture braces, etc. Some helped temporarily, though nothing helped the psychological impact. I basically just had to live with it until last year when I went back to see if there were any other options for me (since my pain was increasing).

My GP seemed oblivious to my spine disorder (and she has scoliosis!) but referred me for x-rays for ‘neck pain’. The radiologist mis-diagnosed me as well with postural kyphosis. It took me going back to him, insisting he look into Scheuermanns then re-read my x-ray, searching for scoliosis surgeons in my area and campaigning my GP for a referral that I finally got somewhere. For me, the best option turned out to be surgery – I’m now 10 weeks post-op and doing well (other than some minor setbacks).

Long story short – I recommend doing all the research you can then push for the answers you want. I’ve read about other folks on the forum who’ve had to do the same. Though not many here on the forum have Scheuermanns (scoliosis seems to be much more common), everyone here can understand the pain you’re going through (physical and psychological) and be a good source of support.


Wishing you the best of luck!
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- Kay

I was diagnosed with Scheuermann's Kyphosis at age 16. I had an 80-degree thoracolumbar kyphosis and mild scoliosis. My posterior fusion surgery was performed by Dr. Sethi in Seattle on Earth Day 2014. It reduced my kyphosis to 47 degrees and my scoliosis to about zero!
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