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Hi Wendy
Im not expecting anything really. I think its too late to hope for much at my stage.The idea of me going on Humira was to try and give me a better standard of life but as far as im concerned the only thing that could do that is being 6'4" again or close to it. Its very difficult deciding what to do. I think if it was just me I would say go for it and sod the consequences but I have to think of my wife and the children.I think at some point the way Im going there wont be much choice the more my kyphosis increases the harder it wil be for me to breath and swallow. I know my rhumi wants it done so I will wait till I see him next month and see what he thinks.Its the surgeons At the spinal unit queens square in London who are saying its too dangerouse.But I know they have a new one there who specializes in straightening spines so you never know.
Kevin

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Very_Addicted_to_AS_Kickin
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Kevin - and why not a second opinion up in Notts, see Alan's surgeon. No matter what the first surgeon says, always useful to get a second opinion (wish I'd done so for this shoulder replacement of mine...!)

That kyphosis sounds bad. Mine is nowt much by comparison. Do you get problems breathing? My chest tends to hurt and the rib cage can be a stinker.

But nowt in comparison to you guys. Y'ALL remarkable fellas - courageous. Super to have a great family behind you, family and friends, nowt like. That's for sure.

(((HUGS))) to the guys


MollyC1i - Riding OutAS
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Titanium_AS_Kicker
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Well Molly, the next bit is somewhat 'Lascivious' thus I will permit you to read it only as long as you promise to wear a blindfold..!

Need to be battle hardened tough skinned and a grim type to read the next bit, is only one female onhere that I think is like that..............errrrr.........lol...thanks Mo;;y for your kind words.

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Kevin, I agree with Molly. Mind you my chap has retired, he is nearly as old as Mig, so no longer practising.

If and I mean IF, you seriously want to go for it, then do quote the charter. They will have to have very good medical reasons for refusing, but, but but, work on neck and just below is dangerous stuff. Best to you Kevin.

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Hey, I am young! And Alan, wow, it appears your surgeon was still actively authoring papers and perhaps consulting, as recently as 2008!

Kevin, if you are actually pondering this, you might find these articles from PubMed of interest:

C7 decancellisation closing wedge osteotomy for the correction of fixed cervico-thoracic kyphosis.

Flexion osteotomy of the cervical spine: a new technique for correction of iatrogenic extension deformity in ankylosing spondylitis.

Early complications of spinal pedicle screw.

Surgical management of symptomatic cervical or cervicothoracic kyphosis due to ankylosing spondylitis.

Clinical outcome results of pedicle subtraction osteotomy in ankylosing spondylitis with kyphotic deformity.

If I was ever confronted with the necessity due to troubles of seeing, swallowing or breathing, I would want to consult with either Alan's surgeon (with his vast expertise and yrs of experience, specific to AS), or a surgeon who had developed their skills by training under him.


I bet it is difficult to even contemplate.

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cripes Mig, where did you find these. Told you he was a big wheel in the spinal world.

Am surprised he still at it in 2008 must be well past retiring.


I owe all to him, and Kevin yes, these articles renew hope for you I think. Well done Mig, really helpful stuff

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Very_Addicted_to_AS_Kickin
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Mig - Facinating. Good research gal. Don't think anything can 'be' done with my neck, but would sure like to consult with him, just for an opinion as to 'any way forward' with neck problems, even IF comes to 'just' cervical collar... Hmmmmm. (Thinks)

But there ya go Kevin. NO harm in seeing Mr Webb. Looks like he's the goods for UK. At least you'd get an honest opinion. I'd go for it. (Don't mean you 'have' to go for surgery...!) See him afore he disappears off the scene to total retirement growing roses or summat 'smile'.


MollyC1i - Riding OutAS
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Thanks for that Mig I will have a read later. I have just got back from a night in hospital having a lovely sleep study.Not much sleep too many wires.
Kevin

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Hi Molly
Yes probably good idea to get second opinion Im going to talk to my rhumi next month about it.He is really good and knows a lot about AS Hes actualy from New York and I trust what he says.I do have some breathing problems at night which is why I have just had a sleep test. My rib cage is fused so pain only tends to be if I sit wronge or try and twist. Thanks for your advice.
Kevin

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Thanks Mig
Interesting It confirms what I had already found out for myself on some other sites. Im going to look into this more before my next rheumy visit.That will give me somthing to do Im getting a bit depressed with it all at the moment.
Kevin

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