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  #1  
Old 14th January 2008, 10:51 PM
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Default Pictures of my back, the psychological and physical pain of living with kyphosis













This was taken in march 2004.
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Old 14th January 2008, 11:15 PM
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Oooch. Thanks for posting these Mark, I'm really not familiar with kyphosis and it helps me a lot to be able to see what you have to deal with xxx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 14th January 2008, 11:15 PM
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Mark, that does look like it's very painful. I think you definitely need to get checked out again and explore your options...

I don't know if this site's members are a typical representation of relative numbers, but it strikes me that the blokes tend towards kyphosis rather than scoliosis. I wonder why that would be, if indeed it is the case? My Grandad certainly had kyphosis, although I've only realised that with hindsight.

Please let us know what you decide to do Mark.

Love, Gilly xx
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Old 14th January 2008, 11:16 PM
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Are you having your back treated mark............

What does your curve measure at the moment?????

Thankss for sharing your pics
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Old 14th January 2008, 11:23 PM
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so many people around here value your unwavering support, mark and i think it's really brave to post those photos. it's something i knew i would regret deeply, but i never plucked up the courage to strip off for photos like this before i had my surgery so i really applaud people like yourself who do. at the time i didn't want to face the reality of how i looked, i didn't consider that i could've just had the photos taken and not looked at them myself until i was ready to do so. but what's done is done for me.

i hope you can find a way of feeling better about yourself and easing any physical pain you're in, be that through surgical or non-surgical methods. but i think whatever happens you're brave and caring, and deserve a fantastic outcome just like everyone else.
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Diagnosed in March 2001 by family GP after my mum noticed an asymmetry in my spine. Referred to a consultant at the RNOH, Stanmore and started attending consultations for x-rays twice a year. Prescribed a TLSO brace to be worn 16 hours per day. Began with double major curves at approx 48 degrees. Offered surgery in 2003 aged 16 and declined to continue with school. Requested surgery in 2005 instead. Had T11-L3 fused on 16th July 2005 and haven't looked back! Released for all activities in March 2006, having been driving and riding horses with consultant's permission since 7 weeks post op.
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Old 14th January 2008, 11:46 PM
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Quote:
Originally posted by sibowainwright@Jan 14 2008, 11:16 PM
Are you having your back treated mark............

What does your curve measure at the moment?????

Thankss for sharing your pics

Its a long story Simon, i was first assessed in the dim dark early 1980s when no one wanted to know, the tecniques weren't really there for kyphosis surgery as it a little more difficult than scoliosis surgery witht he risks being slightly higher. So i left it be for 20 years then went back a couple of years of ago and got the same response. Never been measure so don't know what the curves are. I think theres a post somewhere with my full story. Surfice to say in a lot of pain most days but its been with me for all my life so its like a part of me. I have entered a really active phase of my life. I walk, climb and do the odd bit of mountaineering as well as run so i don't want any thing to disturb my fun time because apart from my family its really all i live for. So i have a lot of thinking to do as i need to weigh it all up. Along with all the other issues i have got going in my life at the minute lifes a bit of a struggle.

I don't know if i could take another rejection from a surgeon again either. The post code lottery that is the NHS has done me no favours what so ever

Thank you all for your kind words

It does mean a lot

mark
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Old 15th January 2008, 12:07 AM
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Hi mark

You really sound as you have gone though the wars like i have am 33 now and this will be my first treatment in the next few weeks.................

I was diagnosed fobbed of for a number of yrs then gave in and left it......
Since between 2000 and 2007 i have been to so many places to discuss my back four specie
last and last year my kphosis measured 67 degress.
It long winded to go in to now ....
But i got sent to a great surgeon called mr williams at hope hospital manchester very laid back guy
(he is the president of the uk scolosis )

But has a special interest in kphosis and adult recrastrution surgery....
When i did see him he mesurerd me at 97 degree so time for surgery now

just a quick word about the hosiptal itself

The speacial spinal unit has just been voted 2 in the nhs trust guide over great britian ........and they have built a new 30 bed hdu unit just for spinal surgery plus a new jackson operating theartre table the only one in the country

They uset hem in the states but only hope hospital has brought one
so i would like to recoumend mr williamson or mr oxborrow or mr mohammed as they are the top class kyphosis/scoliosis surgeons working there to...............

This is the link to the doctors and the hospital take a little look and if you ever need to see a specilast then have a try with them .......

The link is on the next page mate
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Old 15th January 2008, 12:08 AM
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http://www.srht.nhs.uk/patient--visitor-in...pinal-surgeons/


spinal surgens
Mr Richard Cowie, Consultant Neurosurgeon
Mr Cowie trained in Edinburgh. He has a wide spinal practice with a special interest in cervical spine problems
Mr Hassan Dashti, Consultant in Spinal Surgery
Mr Dashti is the most recent appointment to the department, having trained in Dundee, Manchester and the United States. He is trained to undertake a full range of spinal surgery, but has a special interest in spinal deformity.
Mr Kanna Gnanalingham, Consultant Neurosurgeon
Trained at Queen Square and has a special interest in lumbar spine surger
Mr Jeremy Holland, Consultant Neurosurgeon
Trained in Newcastle and has a special interest in cervical and lumbar spine surgery.
Mr Andrew King, Consultant Neurosurgeon
Trained in London He has a special interest in cervical spinal surgery.
Mr James Leggate, Consultant Neurosurgeon
Traied in Edinburgh. He has a special interest in cervical and vascular spinal surgery.
Mr Saeed Mohammad, Consultant in Spinal Surgery
Mr Mohammad trained in London and has a broad spinal practice. His special interest is cervical spine surgery
Mr Neil Oxborrow, Consultant in Spinal Surgery
Mr Oxborrow trained in Leeds and Manchester and has a special interest in spinal deformity. He undertakes a full range of spinal procedures.
Mr Raymond Ross, Consultant in Spinal Surgery
Mr Ross trained in Oswestry. His special interest is surgery of the lumbar spine.

Mr Brad Williamson, Consultant in Spinal Surgery

Mr Williamson trained in Manchester and Hong Kong. He is President of the British Scoliosis Society. Although his practice involves all aspects spinal surgery, his main interest is adult and paediatric reconstructive spinal surgery.
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Old 15th January 2008, 12:09 AM
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The Spinal High Dependency Unit has been refurbished and extended to provide more beds, newer equipment and improved surroundings for patients.

The Trust has invested in new neuro navigation equipment which supports the treatment of patients with tumours.

A new microscope has been purchased which enables microsurgery to be performed with the benefit of shorter length of stay.

The Trust has a Jackson operating table which is the latest design to enable modern spinal surgery to be performed with 360 degree imaging.
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Old 15th January 2008, 12:11 AM
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hope this help you in a little well

hope and luck to you mark

i will say a prayer for everyone tonight as its also the day my nan passed away so i will adding a prafer for all members of sos..........
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  #11  
Old 15th January 2008, 12:12 AM
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Thankyou so much for those links Simon

So sorry to hear about your gran

my thoughts are with you and your family at this sad time

Peace be with you

Mark
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  #12  
Old 15th January 2008, 12:14 AM
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anything mark

Takke care my friend and have a good read though......................

ps there waitng time are very short indeed at present you can click on to the link and look for your self
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  #13  
Old 15th January 2008, 12:25 AM
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Complex Spines 3 week wait thats outpaient

Spinal surgery 8 week wait for this is inpatent (If you need a op)
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  #14  
Old 15th January 2008, 02:35 AM
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Quote:
Originally posted by mark+Jan 14 2008, 11:46 PM--></div><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td>QUOTE (mark @ Jan 14 2008, 11:46 PM)</td></tr><tr><td id='QUOTE'> <!--QuoteBegin-sibowainwright@Jan 14 2008, 11:16 PM
Are you having your back treated mark............

What does your curve measure at the moment?????

Thankss for sharing your pics

Its a long story Simon, i was first assessed in the dim dark early 1980s when no one wanted to know, the tecniques weren't really there for kyphosis surgery as it a little more difficult than scoliosis surgery witht he risks being slightly higher. So i left it be for 20 years then went back a couple of years of ago and got the same response. Never been measure so don't know what the curves are. I think theres a post somewhere with my full story. Surfice to say in a lot of pain most days but its been with me for all my life so its like a part of me. I have entered a really active phase of my life. I walk, climb and do the odd bit of mountaineering as well as run so i don't want any thing to disturb my fun time because apart from my family its really all i live for. So i have a lot of thinking to do as i need to weigh it all up. Along with all the other issues i have got going in my life at the minute lifes a bit of a struggle.

I don't know if i could take another rejection from a surgeon again either. The post code lottery that is the NHS has done me no favours what so ever

Thank you all for your kind words

It does mean a lot

mark [/b][/quote]
Mark - your curve looks to be in excess of 90 degrees (maybe 100+?) - You would be definately a candidate for surgery. I have 90 degrees and the surgeon with out hesitation suggested the option of surgery.

IF you are unhappy - you owe it to yourself to explore your options. I really mean this.
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  #15  
Old 15th January 2008, 03:48 AM
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Mark, I cannot imagine the courage it must have taken you to post your photos. I am a full chickensh*t when cameras are around. I just don't want to be in them and even I don't look at me without tons of big clothes on. Thank you for the post. And I have to tell you I still bet I am your most twisted buddy. Incidentally those moles you have....I continue to get the damn things - I can feel them but I don't look at them either. Geez, I am an ostrich! Thanks again, Love and hugs, Jean
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I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.
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