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  1. #1
    Join Date
    Jun 2014
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    6

    Default New to forum

    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 12:39 PM. Reason: Adding pictures

  2. #2
    Join Date
    Jun 2012
    Location
    Reading
    Posts
    322

    Default Re: New to forum

    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
    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.

  3. #3
    Join Date
    May 2013
    Location
    Washington State
    Posts
    376

    Default Re: New to forum

    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!
    - 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 50 degrees and my scoliosis to about zero.

  4. #4
    Join Date
    Jun 2014
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    6

    Default Re: New to forum

    Hi, thanks for your replies! Just a quick update for you all. It was my daughters birthday last week, the day before it I pulled the bottom of my back (talk about timing), the pain was intense. I could not move at all and it spread across my legs and all over my back. A trip to the walk in showed I have swelling in the tendons. I am feeling a bit better this week, the timing could not have been worse! I have got on with it and fought through the pain.
    On a positive note I recieved a call from my doctor last Friday saying he is referring me to a specialist hospital in Oswestry. Has anyone else had experiences with here? It was such a relief to finally feel like I am getting somewhere, ironically it came at this time of extreme daily pain. I will keep you updated on what happens. I am a bit nervous for what they will say but at the same time I am a little excited that they have finally referred me.
    My doctor said I may have ankylosing spondylitis, has anyone got any experience of this? I hope it does not affect any outcomes from my hospital referral. Thanks for reading, Dan.

  5. #5
    Join Date
    Jan 2011
    Location
    Leicestershire
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    843

    Default Re: New to forum

    good to see that they are moving forward

  6. #6
    Join Date
    Jun 2014
    Posts
    6

    Default Re: New to forum

    Yes good news. I ha a call today from the hospital requesting copies of my xrays. Small steps but all good so far!

  7. #7
    Join Date
    May 2013
    Location
    Washington State
    Posts
    376

    Default Re: New to forum

    Quote Originally Posted by dandung86 View Post
    Yes good news. I ha a call today from the hospital requesting copies of my xrays. Small steps but all good so far!
    Great news! Sounds like they are moving forward with your case. I hope it all works out.
    - 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 50 degrees and my scoliosis to about zero.

  8. #8
    Join Date
    Dec 2012
    Location
    Reno, Nevada USA
    Posts
    233

    Default Re: New to forum

    Dan, here is an article about Mick Mars. He has AS.
    http://love-it-loud.com/retrospectiv...g-spondylitis/

    I also worked with someone that had AS. He was in pain all the time, and so was I. It was a mutual sort of thing.....

    Be sure to let us know what happens....

    Ed

    55 yr old male
    T70 L70 double trouble
    A/P T2-Pelvis BMP Jan 2008

  9. #9
    Join Date
    Jun 2014
    Posts
    6

    Default Re: New to forum

    Hi all, I had my first appointment at the Robert Jones and Agnes hospital in Oswestry last week. I had a couple of xrays, blood tests and then got to speak to Mr Davidson the consulstant spinal surgeon. I was pleased I finally got to speak to him. It was the first time I had seen my spine on an xray, scary! I measured at 85 degrees with scoliosis thrown in there also.
    What was found was my vertebrae have fused in quite a few places, I have always wondered why I have never been able to lie flat, this helps explain it. We had a good talk and looked at the xrays which helped me. I was told the risks of surgery and it got me thinking a lot.
    Is it selfish if I have it and something happens? I want to have it for myself but also so I can do things with my family. There is so much to think about.
    I have been booked n for a CT scan and MRI on 11th November at the same hospital. I will keep you updated how these go. Thanks for reading and replying, Dan

  10. #10
    Join Date
    Jan 1970
    Location
    Sheffield, UK
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    16,221

    Default Re: New to forum

    All surgeons have to inform their patients of every possible risk in having surgery but in reality, these risks are very tiny, especially the more serious ones, since they use spinal cord monitoring to detect any drop in signal along the spinal cord whilst operating which then allows them to make adjustments to avoid paralysis or other serious damage.
    Me, a Mod? Nah ... I'll always be a rocker

  11. #11
    Join Date
    Jan 1970
    Location
    South Shields via Bradford
    Posts
    14,027

    Default Re: New to forum

    As Gilly says they have to cover all the bases and let you know the risks

    Unfortunately surgery for kyphosis is a little riskier and a bit more brutal than scoliosis surgery

    You are right to give it a lot of thought

    On the plus side you will have a lovely straight back and hopefully reduced pain following your recovery

    I don't regret choosing the surgery option but it was brutal, it did hurt for a long time, I need revision surgery but the confidence it gave me to cope with life out weighed the negatives

    I don't hide as much I used to, I am more confident in company who do not know me and I know wear just t shirts and not big baggy jumpers which I did to hide my back prior to surgery

    Take care dude

    Mark
    Latitude: 54° 57' 34" N Longitude: 1° 25' 16" W


    Mark's a groovin an a movin

  12. #12
    Join Date
    Jun 2014
    Posts
    6

    Default Re: New to forum

    I have got my CT and MRI scan tomorrow at Oswestry. Do I need to prepare in any way? It may be a sleepless night as it is all becoming real that I am finally getting help

  13. #13
    Join Date
    May 2013
    Location
    Washington State
    Posts
    376

    Default Re: New to forum

    The CT isn't too bad, the MRI takes longer and can get claustrophobic if you have issues with that - it can also be hard to lie still on that hard surface with your curved spine. The radiology practice I work for suggests people with claustrophobia issues see their physician for something to relax them, like Xanax. I don't like small spaces but did okay by closing my eyes before I went into the machine and leaving them closed until I came out.

    If you let the tech know you have a hard time lying still due to your spine curvature they should be able to get you a few pillows to prop up you neck and legs. That may help.

    It's not the most fun experience but doesn't last forever, plus it's essential for your pre-op. The CT and MRI can tell the surgeon important things about the health of your spine.

    Good luck tomorrow!
    - 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 50 degrees and my scoliosis to about zero.

  14. #14
    Join Date
    Jun 2014
    Posts
    6

    Default Re: New to forum

    Hi, it has been a day since my tests. The MRI scan was quite possibly the worst pain of my life. As I am unable to lay flat I had to 'grin and bare it' and lay the best I could. The nurse was nice and understanding and placed a pillow under my knees. I had a neck brace fitted which was paced over my chest also. There was no going back now..

    The scan itself was loud (even with headphones in) and very long, I was in there just under an hour, 55 mins in total of lying as still as I could. The first 10 minutes was actually ok, the sensation of being in the scanner is quite surreal. During the following 30 minutes the pain across my back got considerably worse. I did not want to stop the scan as in my head was thinking about lying on a hot beach. This is the one thing I want to do when I am fully recovered, taking my fiance and little girl on holiday somewhere nice and hot with my nice straight back.

    I soldered on, the last 15 minutes being the worst pain ever, I was nearly crying and sweating. The lady came in and removed my neck brace for this and put pillows under my head, this helped me not move which had started to happen.

    When the board moved out of the machine for the end of my scan I was so relieved, I could not move off it though due to being so numb all over!

    After that I was taken to the CT room where I had a 'quick' CT, the lady kindly let me pace my hands over my head as I felt dizzy.

    After my scans were completed I was left to get dressed, I was so dizzy I could not put my shoes on the right feet!

    I am glad they are over, hope I have not rambled on too much I just wanted to explain my experiences of a very painful day. Anyways thanks for reading, onwards and upwards!

  15. #15
    Join Date
    Apr 2014
    Location
    US
    Posts
    39

    Default Re: New to forum

    Hi Dandung - welcome to the forum! Just think about how nice it will be not to have the Kyphosis so severe any longer - and the MRI is done. Check - one off.


    Best of luck to you!
    Warm Sunny Beaches...

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