Kyphosis and other spinal deformations

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Hi all,

 

​  I wanted to ask whether anyone with AS has experiened any form of spinal deformation as a result of AS.  Our family is riddled with severe back problems and I am the only one who has been diagnosed in the AS family of illnesses.  However, my brother is actually further along in his back problems.  His back has gotten so deformed that it has caused severe pinching of the nerves and has effectively left him a paraplegic.  He suffers with kyphosis of the neck to the point where his chin pretty much rests on his chest and doctors wanted to pretty much fuse his whole neck which he declined.  But his neck is likely responsible for his paraplegia.  He also has moderate to severe scoliosis in parts of his spine and the level of pain that he has gone through has left him dependent on very strong narcotics.  As I said, he has never seen a rheumatologist and has never been diagnosed with AS but I suspect it.  I also have seen pictures of AS sufferers who have kyphosis and other spinal deformities.  Do his problems ring a bell to anyone on this forum?  Have you seen AS lead to such deformity of the spine?

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  • Posted

    Hi my uncle was literally bent over double by the time he reached 80 never saw a doctor in his life we only found out that hehad AS when he passed away there was an autopsy due to the fact that he passed away in a care home. It's ironic he only went in to the home on a Monday and died two days later we think he just gave up after losing his dear wife.

    My left wrist is starting to fuse together no amount of pills or therapy is working and my god it hurts.

    AS is well known for deformity your brother should see a doctor asap.

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  • Posted

    Hey Sandyman,

      Very sorry to hear about your uncle.  There certainly seems to be something to the fact that many people simply lose the will to live and they pass.  The only upside is that he is not suffering anymore.  

      I have told my brother many times that he should see a rheumatologist but he is one of those people with a built in mistrust of the medical professon.   He hates to see a doctor.  Plus he has been disabled for years now and is now on a fixed income so he tends to be very frugal about spending money on medical issues.  His problem is now just as much a neurosurgical problem as it is an autoimmune problem.  Because of the problems in his spine his nerves are getting pinched on many levels including severe pinching in the neck.  Even if rheumatologists could stop his AS (if he has it) dead in it's tracks the neurological problems would still remain.  Plus he has been a lifelong smoker who now has emphysema so he becomes higher risk for any surgical procedure.  He has backed himself into a corner by not doing something about this earlier.  

      Anyway, thanks for getting back to me.  Sorry to hear about your wrist too.  Thats one of the joys of AS in that it isn't only the spine that gets effected.  Hope you can at least get the pain to a manageable level.  

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  • Posted

    Iam beginning to show signs of Kyphosis after many years of suffering with AS.I really try and make an effort to keep my neck flexible, push through the pain barrier!!!!!!  One of my old neighbours suffered from AS and was almost doubled over, she could only look at the ground, poor soul. It certainly seems like your brother has the same. Interestingly I visited our local museum where they had a body science display and they had a real skeleton of a normal spine and a one with AS, totally fused and bent over. I guess once the spine starts to fuse it causes other problems in that area too. Wish I knew the answers, my gp and rheumatologist certainly dont.
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  • Posted

    Thank you for getting back to me, Gillian.  I'm very sorry to hear that you are beginning down that kyphosis path.  I wish I knew what there was to do about that but I don't.  I have always been considerably taller than my brother but I was struck recently when he came to answer the knock on his door and I realized I was looking at the top of his head rather than his face.  His chin truly rests on his chest.  

    I do need to comment though when you said that your rheumatologist does not have the answers for you.  At the risk of continually repeating myself I strongly believe that there is a GREAT deal of variation out there in terms of competency when it comes to AS.  Simply going to a rheumatologist doesn't cut it.  You have to find a rheumatologist that specializes in AS.  The very first rheumatologist I ever saw for this condition was far and away the best.  I had to leave her due to insurance reasons and I have been to three other rheumatologists after this one. None had nearly the depth of knowledge that she did even though they were very good rheumatologists in other areas.  Rheumatology is an exceedingly broad and complex area of specialty.  Most of them focus on what are the more common autoimmune diseases and AS is not one of them.  There are no magical answers when it comes to AS but it is very important to find a doctor that can at least answer your questions from a wealth of experience.  I hope you can find one that can answer yours a little better.  Best wishes.

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  • Posted

    Hi Peter, yes I guess what youre saying makes sense. I presumed that all Rheumatologists were trained in the same thing. It didnt occur to me that some might specialise in AS. In five years mine has referred me for 2 MRI scans only to say that because the inflammation isnt apparent in my hips,I cant have anti tnf. Not sure if that would work however, Ive lived with this for so long now that its part of me. How are you, is it just part of your life too. Thanks for talking to me, theres a lot of us out there and it helps to share, best wishes.
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  • Posted

    Hi Gillian,

      I also agree that the training is the same or similar for most rheumatologists.  However, areas of focus and experience diverge after that.  I went to an orthopedic surgeon when my lumbar back was in crisis.  While seeing him I mentioned that I was having a similar problem in the cervical area.  He told me that I needed to see his associate because he (the one I was talking to)  "does not do necks".  The other point is that AS in general has not been one of those poster child illnesses that gets all of the publicity and research.  It seems to be coming out of the closet so to speak in the last couple of years but RA was the area that got most of the research money and most of the clinician's focus in the past.  I think all rheumatologists know AS at some level and will treat it but clearly some of them have seen many more cases  and done much more research.  When you are trying to get questions answered and the latest treatments attempted, it helps to have a doctor that has had many "hands on" encounters with AS.  I think that is what separates some rheumys from others.

      As to my experience, I've had various amounts of back pain ongoing for about the last 13-14 years.  But early on I was simply diagnosed as having facet joint arthritis and degenerative disc disease.  And I have had my share of disc issues which has led to two cervical fusions and one lumbar surgery.  It was only about three years ago that I decided to see a rheumatologist because I heard about AS and I have a strong family "tradition" with similar back problems.  All of my siblings and my mother shared the chronic back issues.  Anyway, I was diagnosed with axial spondyloarthropathy since I am HLA-B27 positiive and have other indicators of AS but thankfuly, so far, I have not shown the x-ray signs of AS.  But the pain is constant.  It goes from my neck at times down to the lumbar and SI joints where the primary problem is.  Sciatica is also part of it as the pain goes down to the left foot.  I've tried many things like many others on this forum and for the most part I just try to adjust to pain being part of my life.  It has cut my activites down a great deal.  I get out to walk when I can but many things that I have done like biking and other more strenuous activites hurt me too much.   But as I said, I do not have the kyphosis or fusing that many have so I take that as a blessing and I'm thankful because I know whatever pain you feel, there are those who have it worse.  Best wishes to you and I hope you find enough relief to lead a good reasonably active life.

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