does anyone have any experience of surgery for Ankylosing Spondylitis?

[geraldinetheluckygoat]

DH has AS and over the past few years has become worse. He's quite a bouyant person and doesnt let it get him down too mcuh but quite limiting in a lot of ways. Hes been back and forth to the consultant who wanted to give him some new drugs initially to help. Now they have assessed him and hes not qutie bad enough for the new drugs (read, they are very expensive!!) and they are suggesting that surgery will be a better option.

I have to admit im FREAKING OUT a bit about dh having surgery to improve movement in his spine. what if they damage it further or it goes wrong and he ends up parylised or something? Im also freaking out about how much sick time he will have off and wether his sick pay will cover the mortgage if he is off for a long time. I dont earn too much - im self employed and work can be sporadic. I guess i could try to get some part time work to suplement income, but then what would we do with the kids? We do have health insurance but as it is a pre existing condition they will be funny i think about paying out. Initially he was having private health care and then the insurance company stopped paying for it as they said it was a pre existing condition, and that they will only pay if it gets significantly worse ( i think).

Plus i keep reading stuff on the internet and it is terrifying me but I cant stop. I just look at dh, it would be fantastic if they could do someohting to give him more movement in his spine, but are the risks worth it? do you think they would think it would be weird if i went to the next appointment too to ask a few questions?

my Dad has AS and has some pretty serious surgery after an accident, but the surgery was complicated by the AS (and other conditions) rather then becuase of the AS IYSWIM

I can't tell you whether the risks are worth it, but I don't think it would be odd for you to go to the next appointment with a huge list of questions. In fact I think it would be an excellent idea.

When my Dad has his accident I found a forum online for people and families dealing with AS. The bookmarks I have go to...

www.nass.co.uk/

www.as-assist.com/forum/index.php

Hope someone else with better knowledge comes along soon

Thank you bumpybecky! I will have a look at those forums. Dh refuses to look at anything on the internet regarding his condition, which is probably sensible actually lol. He also has osteoperosis so im wondering what implications that will have for surgery...of course only a doctor can answer these questions so I think I will go to the next appt.

My Dad has osteoperosis too and Parkinsons just for luck He is apparently the only patient in the UK with AS and Parksinsons and it can make balancing his meds rather difficult.

Dad's accident was bad, he fell on the stairs and ended up breaking his back somewhere in the cervical region. He had to have some pretty serious surgery. From what little detail my Mum has given me, it was all a bit experimental due to his combination of injuries and preexisitng problems. His AS was farily severe before, he was walking but had very limited bending movement, he was very bent over and had a bad hump he's never really done the exercises or physio or anyting. He'd gone for the head in sand approach.

They weren't sure he's even walk again, but since the surgery he's able to walk with support. He has grown several inches taller though since all the roads straightened things out! He also has aquatherapy which has helped.

I think your DH's Dr will be used to wives with lists if questions. It's fairly serious surgery after all. Also it's probable that you don't need to make a decision now, it might well be that it's a surgery they recommend at some point, either now, 6 months, 12 months whenever.

Good luck to both of you

thanks bumpybecky, thanks for sharing your dads story! Im sorry to hear he's been through so much DH sometimes goes to aquatherapy too which he finds good too. I will go along and see what they have to say, and keep fingers crossed that it all helps!

Hi, are you in the UK?

Hi yes I am