Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group bambo spine

Hi has any one heard of AS being refered to as looking like bambo? I finally got my mom to get checked out and the Dr. told her she didn't have AS because her spine didn't look like bambo. My spine doesn't look like bambo either, I was dx. by the damage to my SI joints and cllinical symptoms as well as being HLA-B27 positive. I can't think of any other reasons for my symptoms unless it be Fibro Myalgia, but even so that doesn't effect the spine foremost and then the other joints. It is my spine that is the problem. It starts at the base of my skull and goes all the way to my tail bone. It burns, hurts and sometimes I get migrains so bad it feels like my spine is trying to crawl into my brain and my hips are trying to pull it back down. Any way the dr. did tell her that she has significant back problems and she had a catscan done. Also her RA has gone up to 50. This is strange as it wasn't even positive until about 5 years ago but she has had a great deal of problems with arthritis since she was in her 20's, but it waits til she is almost 60 to even turn positve? If my mother doesn't have AS then where did it come from because my dad definatly doesn't have it and my mom has other symptoms such as IB and has had an retinal bleed a few years ago. Any ideas everyone?

Tetienne:

According to my understanding, the only 100% accurate differential for AS is observation of sacroilliac fusion. And, to quote the "Spondylitis in Women" section of the book "Straight Talk on Spondylitis" published by the Spondylitis Association of America:

"While it is more difficult to diagnose it in females, spondylitis tends to take a milder course in women. Spinal mobility is often reduced, but radiographic changes develop more slowly and are usually less severe. Sacroiliac fusion,k spinal rigidity, reduced chest expansion or severe flexion deformities of the spine are far less frequent in women. Fewer than 10% of women will develop fused or 'bamboo' spine. Neck involvement, however, may occur more frequently in women."

A second opinion might be in order, if you or your mother are concerned despite the initial doc's dismissal based on the x-ray.

Also of note from my personal experience:

I have been suffering through the intense pain of AS (in fact I'm mid-flare right now...had to stop all meds and supplements prior to my knee surgery on May 23) with some (thankfully not much so far) loss of spinal mobility, and x-rays taken recently showed "no significant abnormalities". So, once again, an inconclusive x-ray doesn't mean no AS...and "bamboo spine" would most likely not appear for quite some time, if at all.

Hello,
That's exactly what my doc said, and he is correct. A.S. will cause ones back to
look like a shaft of bambo on X-rays. BUT ( and this is a big one.) this is the end
result of Ankylosing Spondylitis. A bambo back is A.S. at it's worst or final stage.

Lots of people here will tell you the old back don't look like bambo just yet, but we
are all working on it. The speed and pain needed to get there can vary alot.

The good news is once you are completely fused ( and this can take beyond forever)head to tail, the pain goes away. Or so I'm told. Makes me want to find a way to
speed this fusion up, and get it over with.

Any good roomy can spot A.S. a mile off. Moderate relief of pain with activity is one
way A.S. seems to differ from Fibro Mi whatever. It is often noctural by nature, is
another sign. However no one has told me how the heck my back knows it's 3 in
the morning.

"It seems to affect women less severly than men." Some women on this site would
strongly disagree with that statement. So girls if your reading this speak up.

Take Care: Brad

Regarding some of your other questions regarding the diagnostics:

1) I know that rheumatoid factor can take a long time to elevate...long after RA has arleady gone to work. The length of time between the onset of mom's symptoms and her dx seems very long, but an RF value above 50 is pretty significant...but again it doesn't mean she has RA. Like HLA-B27...you can have a + RF and still not have RA, and vice versa. The IBS is very strongly assosicated with AS, I believe. Bleeding retina could be a lot of things...eye problems associated with AS usually don't have retinal involvement though...it's typically an anterior/iris inflammation that, if left untreated, can spill over into the uvea (middle of the eye). That's what happened in my first iritis flare...I let it go a long while without treatment.

2) Regarding inheritance...nobody that I know of in my family has AS. HLA-B27 can be inherited, which renders you some 60-70 times more likely to develop AS...but apparently most HLA-b27 people still don't get AS. I believe the inheritance rate for HLA-B27 is 50% if one parent has it. Depending on who you ask, 5-10% of people have HLA-B27. If only one in a few hundered pepole develops AS, clearly most HLAB27 people do not. However, I have also read studies suggesting that people are more likely to develop AS if they have relatives with the disease, whether they are HLA-B27 or not. Again, it's not an exact science. And remember misdiagnosis among the various types of spondylitis is fairly easy.

---"While it is more difficult to diagnose it in females, spondylitis tends to take a milder course in women.--------------------------------------------------------------------------------------------------------------

Milder in terms of fusion but unfortunately not in terms of the level of pain. Women do tend to fuse later in life than men do (hormones? Who knows.) but it's also true that after fusion there is less pain. I spent 20 years with my body trying to fuse my SIs and the pain levels often were at the screaming level, fairly constant pain. I also have a lot of mechanical damage in my back from all the years of inflammation, and although I'm now on Arava and it has done wonders, am in remission when it comes to pain and stiffness caused by active inflammation, but still have problems due to the damage to my lumbar spine. Since fusion comes later in life, and since undifferentiated spondylarthropy doesn't seem to be something that rheumies give much thought to when a woman goes to see them with symptoms of back pain, stiffness that is worse in the morning and gets better as the day goes on, etc., etc., and of course there's no radiological evidence (no fusing yet), it becomes a mad merry-go-round, trying to convince the doctors it is in our backs, not our heads Women also tend to have more peripheral joint damage than men, but no one has ever explained to me why this happens. My left foot is a mess, totally fused between the ankle and the heel, so it actually fused before my SIs.

Cheryl

Dogs know how to listen

Mine definetly resembles bamboo. I am 100% fused from stem to stern. Where the discs used to be there is bone growth which look like the bamboo rings. If I start sprouting leaves I will let ya know!

bob

Beauty is in the eye of the beholder. Behold the beauty of Orca Art

Hello,
Bamboo or poker back, two of the more derogatory terms used to describe us. I fused within four years of having AS at 28 years old, I am female, and the pain in my spine has continued to increase badly every year,also in many other major joints. Fusions for me was the beginning of AS. Had to burn this myth up. AS is very strange and unpredictable. Never, never wish for fusions, but perhaps a few less spuds might help..MAYBE!
Liz

By posting that quote I certainly did not mean to downplay the pain, fusion, etc that women and men share with this disease. My only point was to emphasize that the fact that her mother was not exhibiting "bamboo spine" did not necessarily rule out AS, and that perhaps she should visit another rheumy if she wants another opinion and potential for management of her pain.

I apologize if anyone took offense.

Ihave also been told that I have a Bambo spine. Who would of thought bambooed from Butt to bean. LOL

John