Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group CAT Scan of SI Shows Arthritis

i'll need to get a copy of the report, but the rheumy called and talked to my husband. the CAT Scan of my SI showed "inflammation, fluid, and arthritic degenerative changes.....but not enough for a spondylitis diagnosis".

these are the exact terms that were written in my wrist MRI 2 years ago.....that the hand surgeon thought were odd as to the location of these changes (between all the little bones).

I'll need to read the report myself and report back.

on one hand, good to see, finally, a test that correlates with my symptoms, so maybe a wee bit closer to a diagnosis.

on the other hand, not "enough" for a diagnosis......so how bad does it have to be before a diagnosis? i'm sure since "amounts" are qualitative, that this is subjective, to some degree.

i'll also need to talk to a doctor about the "fluid"....the doctor told my husband that i should talk to my GYN if i'm still ovulating. so if i'm not, then what is this fluid? is fluid in joints a common thing? common for AS? common for other arthritises? i'll need to do a bit of research on that one. anyone that knows? how many of you have "fluid"?

also wonder what is meant by "inflammation". i'll have to ask about that as well. what exactly is meant? you can't see soft tissue with a CAT Scan, can you? isn't it just a fancy xray? do they mean, evidence of changes caused by inflammation? and if so, what are the changes exactly? if they do mean the inflammation itself, then maybe i should have gone / should go when my SI is noticeably inflamed, as when i went it wasn't very bad at all, it was bad for about 6-9 months but was finally firming up again.

and what do they mean exactly by arthritic degenerative changes? i wonder if the description of the test results was more specific. again, more questions......

so, glad i got the CAT scan done. i really didn't expect it to show anything if the regular xrays hadn't. but it does. just not enough.......same old story, lots of symptoms, but lots of borderline test results.......

still, i'm happy. something is more than nothing. moving forward slowly better than standing still, or worse yet, moving backwards. patience.

and not that i wish for some disease. no. i know i have some disease. symptoms don't lie. rather i wish for answers, diagnoses, treatments.
that's why i am pleased with a positive test result. it is what it is. there is no changing that. i have what i have. i just want answers, so i can be treated properly. and i know i speak for others here as well that are at this point in their journey as well.

and its not like i'm waiting to be cured. i'm more realistic than that. and more proactive in doing what i can for myself. but i know a lot of people can relate to wanting a diagnosis and wanting to be allowed to try better options like biologics. that's what i'm after.

do i wish OTC NSAIDS were the answer? sure. do i wish NSD had worked for me? sure. do i wish my daily walk made my pains go away? sure. but since none of that is true........

sue

Sue

It sounds like you might have made some progress. Your doctor should be recieving a report (if he hasn't already) from the technician who read your CT scan. On that report it should have on there, FINDINGS (what he found) and IMPRESSIONS (what he thinks). I don't think it would be unrealistic to ask to see that report. Isn't arthritis of the SI the same as sacroilliitis? and isn't sacroiliitis the hallmark for AS?? It's my impression that the medical community wants actual physical proof before they move on, even though all your symptoms are indicitive of a certain disease, since some symptoms are symptoms of other diseases as well. I hope this leads in a direction where you are being taken care of, instead of just alleviating symptoms, I know that's all I had ever wanted.

Good Luck

Hey Sue,.. the actual report might lend you a little more info, but I can try to answer some of what you're pondering here.

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on the other hand, not "enough" for a diagnosis......so how bad does it have to be before a diagnosis? i'm sure since "amounts" are qualitative, that this is subjective, to some degree.

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What is required as "enough" for an AS diagnosis would be (1) sacroiliitis grade 2 or higher on both sides, or, unilateral sacroiliitis grade 3 or higher (New York criteria) or (2) bilateral scaroiliitis grade 2 or higher (Rome criteria),.. combined with at least one other clinical criteria point.

As Ben suggested, "enough" or grade 2 is likely that which is visible on plain xray. Saying it's "not enough" could possibly mean yours represents grade 1 ? Perhaps Pre-AS ?

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also wonder what is meant by "inflammation". i'll have to ask about that as well. what exactly is meant? you can't see soft tissue with a CAT Scan, can you?

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Errr, I am not sure on this. Imaging will show inflammation of bone, however I believe this is usually termed osteitis on reports. 'Some' soft tissue does show and wouldn't surprise me if hints suggestive of inflammation could be seen via imaging also. More or less of this wouldn't likely make a difference to what they speculate, since evidence required for a dx lies in the grade of actual damage to bone. It may be enough to convince them that a bone scan might be useful. A nuclear bone scan is great at showing inflammation.

Degenerative changes mean erosions, as opposed to bone growth. (growth being remodelling/calcification/osteophytes etc.)

The fluid I'm not sure about. Just recently in Oct., my SI's were so inflammed that the area was actually noticeably swollen so there surely had to be fluid, and the pain to match was fierce.

Hope this helps a bit!
mig

Thanks mig for the clarification. I guess your explanation is a little more detailed than mine. I did forget about the symptoms and how long one has had them for an AS dx.

My xrays show that I do not have SI joints. I guess that is enough for a diagnosis....charles

Hi Charles,.. mine have long ago vanished too, yet this stupid disease is still busy laying down bone on top of bone, even though it's already a moonscape. Does yours still persist in attacking the area too, even though it's long ago fully fused? Just curious.

Hugs!
mig

You are welcome Jeffery, although you did have it absolutely correct... sacroiliitis is indeed considered the 'hallmark' sign of AS.

Hugs,
mig

Hi , It is the same ole same old. Yet when we are treated for it we get better. Of ocurse the best treatment is diet. and exercise. My most helpful doctors have been pain phys. and general practicioners. They work with me.
I hope you get some help soon.
I care
Lon

Hi there, curious whether you (Mig as well) still have SI pain even after they've been fused/gone? I hear the pain "goes away" when they're fused but I've been waiting for years........

I have absolutely no pain in places where I am totally fused. The fusing is natures way of healing. However, sad to say, I have lots of pain every place else.....charles