View Full Version : Where do I start
17th October 2006, 04:09 AM
Hi, I'm Lin and live in Canberra, Australia.
I found this site while I was searching for info on spinal surgery after a really depressing clothes shopping trip.
I have quite advanced kyphosis as a result of Ankylosing Spondylitits in combination with bad posture and possibly some degree of scoliosis.
I do not know my degree of curvature, though believe it might have been measured at the rheumatologist. They did this test where I had to stand against the wall as straight as I could and then they measured the gap between my head and the wall? If I remember correctly (and I might not) the gap was about 15 cm?
The only medical specialist I've ever seen is a rheumatologist. The last times I saw one at the local public hospital, but don't trust them as far as I can throw them.
They talked about getting me on new drugs to stop the inflamations and bone calcification, but all I'm interested in right now is to improve my posture or at least prevent it from getting worse. Bone calcification is not all that bad as long as the spine is straight! My lumbar spine is actually completely fused, but straight. The curvature is in the thoracic.
I also have lost mobility in my neck, cannot move my head back or tilt sideways anymore. That does make things worse. I'm having some trouble looking ahead when walking.
But in general I'm coping well with it if it would not be for the feeling very, very ugly bit!
How do you cope with this? What medical advice should I get? What other treatment options might there be apart from surgery? I don't think I can afford a 6 month recovery period right now as I am single mother to a 2yo.
17th October 2006, 09:13 AM
Is there any way that you can get to a specialist rheumatology centre? I can well understand not trusting the local hospital - a friend of mine, who has posted here a couple of times, has psoriatic arthritis and progressive fusion and curvature of the spine because of that. A lot of other joints are affected and his doctors just don't really seem to be doing anything about it.
The test where you stand against the wall gives a certain view of how the kyphosis is affecting your posture, but to get an accurate measurement of the actual curvature you would need to have a pair of full length xrays done - one face on, and one view from the side. With the side view it would be important for you to stand with your knees and hips as straight as possible, even though this may cause you to either tip forward, or lean backward - the measurement of the curvature will be accurate even without this, but how much you are able to compensate for it with other joints of the body will not be.
It's definitely worth looking into the drugs they're offering to reduce the inflammation - there are more options out there now than there were even 5 years ago, one example if it is available in your area being Anti TNF (anti tumour necrosis factor) treatment. This has been approved here in the UK for the treatment of Rheumatoid Arthritis and more recently for Psoriatic Arthritis, and has also been studied in people with Akylosing Spondylitis (I'm not sure if it is approved yet by the National Institute of Clinical Excellence - I'd have to check on that), with positive outcomes: http://www.jr2.ox.ac.uk/bandolier/band106/b106-2.html being an example.
Have you been tried on any of the DMARDs? I know for PA, methotrexate and sulphasalazine are the most commonly prescribed. For a lot of people they do seem to help, although of course they don't work in all cases. Also, if your pain is significant, it is worth trying various different NSAIDs, as different ones work well for different people, and if the pain has increased or changed it could be a very good idea to try a different one. In particular, diclofenac is the first line NSAID used across here, but I know a few people who have been swapped from that to Arcoxia (etoricoxib I think) and have had much better pain relief from that.
As far as surgery goes, I think it would be important to find yourself a very good spine surgeon, rather than a more general orthopaedic surgeon. This is always important with spinal curvature anyway, but in your case with the lack of mobility in your neck, it becomes even more important. You would need to be treated somewhere with excellent anaesthetists who are used to dealing with people who have the kind of restrictions that you do, due to the relative difficulty of intubation if your neck extension is poor. Surgery would most likely be very similar to any surgery to correct a very rigid kyphosis, and would involve cutting small wedges from the rear of the spine, which are then pulled back together by rods to make the spine straighter - there's a link in the General forum that was recently posted which shows how this works. The wedges are called osteotomies.
I'll have a look around and see if I can find any reference to a surgery which was shown on Tomorrows World about 9 or 10 years ago - that showed osteotomy correction for a woman who had AS, and had developed chin-on-chest deformity as a result of it.
Meanwhile, I'm sorry for the circumstances that have brought you here, but nevertheless :welcome2:
17th October 2006, 09:21 AM
Here's the thread in General: http://www.scoliosis-support.org/modules/i...&showtopic=3494 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=3494) You can see the effect of the large osteotomy I had done at L2 to correct a thoracolumbar kyphosis, and a little further down Round the Twist/Kat has posted an excellent link to an article that shows how some osteotomies are done.
The main difference between using osteotomies to correct straightened lordosis (or kyphosis at the back of the waist in my case) and correcting a thoracic kyphosis is that generally they try to do it with fewer and larger osteotomies in the lower spine, and use more but smaller in the upper spine as a normal kyphosis curve is a lot more subtle than a normal lordosis, if that makes sense.
18th October 2006, 09:04 AM
Hi Lin welcome to SSO
I'm 35 and have not had surgery for my curves. I know what you mean about the feeling really ugly bit. Reading the posts and talking with the members who have already had surgery they seemed to be out of action for up to 6 months. You may want to pm Sally as she has had surgery. Unfortunately surgery for kyphosis is a little more difficult in adults than scoliosis surgery is so surgeons can be a little loathe to carry the procedure and the recovery period can be longer and more painfull
Like titch says i'm sorry for the circumsstances that bring you here but we are here to help and support you in any way we can so if you have any questions we will do our best to answer them
19th October 2006, 03:59 AM
Welcome to SSO -you have already gotten some great advice from some of our resident experts through Titch. Mark is always a willing shoulder to lean on too and I'll back him up anytime. Hope we can help you out!
19th October 2006, 01:26 PM
Welcome to the site. I'm waiting to see a specialist about my scoliosis as well. It is only recently that i found out that i had scoliosis. I was being treated for a spinal injury that i have since I was in a car accident 6 years ago. When i was seeing a new doctor about my back injury he told me I had scoliosis. In the last 6 months I've noticed a lump in my back under my right ribs that is quite painfull that I decided to get more info. Hopefully I will soon.
I hope things work out ok for you.
16th November 2006, 09:14 PM
Hi there Lin! :welcome2: Sorry I'm a bit late! I only just noticed this post! :oops:
As you can see from my signature, I also have a considerable kyphosis and am waiting for something to be done about it. My consultant is reluctant to fuse aboveT8 because of the way it may restrict my arm movement, but another surgeon has said something different...so...who knows?
Anyway, you've definitely come to the right place for great advice and support!
Good luck with everything! :squeeze:
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