Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Occipital-atlas-axis joints fused or not

Hello everyone,

I am new with AS Dx and my main problem has been the lost of ROM and pain in my neck. Only 15% left, right, up and down.
My last PT told me that 50% or neck rotation is performed by Altas axis joint so I would like to know if there is and image test that can show the actual damage in that area. Sometimes I think that the exercises can be causing more damage than benefits but no sure, if that area is already fused then is not possible to increase the ROM in my opinion.
How do I know if my atlas axis joint is already fuesed?

Thanks
Alex

Hi there,

First of all welcome to the forum!
This is a great place to absorb tips from fellow patients and find out about new developments surrounding our disease.

Also I am not a medical professional giving advice but will share my experience being a patient myself asking the same questions as you.

The most important question I would have to you right now is how long you had symptoms? Did the symptoms start in the recent few years or were they ongoing for a long time? (5-10 years)

Untreated inflammation can cause significant loss of ROM as well. The best way to confirm if the joint you asked about is fused would be to request a CT-scan, which should be the most sensitive image test to bony growths.

However if you don’t yet have treatment you should ask your doctor about options, for example a TNF-inhibitor or IL17-inhibitor to lessen inflammation and improve mobility.
If you are currently on treatment an MRI can confirm if you still have active inflammation ongoing in your joints, which may contribute to your loss of ROM.

My cervical rotation almost doubled over a 3-year period with humira and Paleo/AIP diet. My left cervical rotation is now almost normal (70 degrees). My right a little less so (60 degrees). I have some structural damage already that my rheumatologist says was caused prior to my Humira treatment, as my MRI shows no inflammation ongoing.

I am personally a bit split about physical therapy. All research and medical advise points to PT being an important part of pain management and maintaining or improving mobility. There is a biomechanics professor who held a talk for SAA that said “motion is lotion” and should never be bad.
Although poor posture (sitting/standing/sleeping) may cause mechanical stress that degrades our joints as well. It may be worth seeing a spine specialist to discuss. I think in the absence of inflammation/spondylitis, joint degradation is classified as osteoarthritis and the end station being “sclerosis” (thickening of bone) which is an early stage structural change as opposed to “ankylosis” (fusion of bone) which is a late stage structural change.

Theoretically, if our disease is in remission with no inflammation nor prior structural damage, it should not be possible to advance past sclerosis - although that is just my theory and needs to be confirmed by an expert or more experience patients than me.

Take care,
PsSpa

Hi PsSpa

Thanks for your answer, I am having this symptoms for about 8 years and the lost of ROM has increased over the years, i went to different specialists including a reumy and the diagnostic was always degenerative because my blood tests were normal (hla-b27 negative, esr sed and c reactive protein normal)
and there was no pain in the lumbar area. They also took x rays and mri of the cervical and lumbar and only prescribe me PT and medications with mo improvements.

A month ago I had pain and swollen in my left wrist and right knees so I went to a new reumy and after a new blood test my esr sed and c reactive protein were high and he told me that the past x rays shows some sclerosis in the sacro joints so he is confident that I have some type of inflamatory spondiloarthritis so he want me to start with enbrel. I am waiting for the insurance approval.

I was reading a lot through the forum and found great stories and information here that is going to help me to manage this better.
I think I am a classic example of delay/misdiagnosed case and I hope to get some improvements with the biologics.

Thanks again
Alex

Hi Alex:

It sounds like we were in a similar situation. I went to a dermatologist regularly for my psoriasis and I have notes as of 2013 that my CRP was within normal range and no apparent joint issues. Years went by and in 2015/2016 I noticed reduced cervical ROM and stiffness and tried with exercises. In 2017 my primary doctor and radiologist thought syndesmophytes in my x ray was osteoarthritis and I was sent to PT. It took another year before I was diagnosed with spondylitis by a rheumatologist. High CRP, high ESR, hla b27 negative. I spent 6 months on NSAID with some improvement, 1 month on AIP w/o NSAID with even better results, and then finally in June 2019 on biologics.

My CRP and ESR stay low with Humira as long as I don’t eat gluten or too much processed/sugary food. Whenever I eat gluten my CRP always goes up (data points at two times the last few years after I ate gluten). So what I found is that diet is an important part of my treatment.

As I wrote earlier the lower inflammation has contributed to increased ROM in my case. I remember feeling awful before I was diagnosed with spondylitis with limited neck movement. Now I have a lot higher quality life and my neck movement is much better than what it was 3-3.5 years ago. It has been a gradual/slow improvement over the months and years and I have not felt any quick improvements over a short period that some patients report. I guess we are all different in how we respond to medication.

In your case the CRP and ESR might be elevated also due to swollen peripheral joints? The best way to answer your question about axis fusion is to get a CT scan I think.

Also if you can bring CRP/ESR under control with biologics and diet then you should be able to regain quite a bit of ROM. Inflammation did more than I thought to my movement and quality of life.

Also enbrel has a financial support page that can reimburse most out of pocket expenses of the medicine

https://www.enbrel.com/financial-support

Take care,
PsSpa

Hi PsSpa

My rheumatologist told me he want to start the biologics and see how it goes before taking the decision of a ct scan because he don’t want more radiation in my body (3 different set of x rays in the last 3 years).
I am trying to start with LSD or AIP but the problem is the lost of weight and lack of energy. Did you have that type of problems? How is a regular day of your diet?
I was on sulfazalasina 2000 mg and indomethacin 100 mg daily for about 3 months and I can said there was and improvement in ROM but just minimal.

I never had psoriasis before but I remember I used to have some type of eczema around my face but no one took that as important.

Thanks for the tip of enbrel support the rheumatologist office is applying also through AMGEN.

Another question, how is/was your ROM looking up and down?

Thank you so much again you are giving me some hope I can improve my quality of life.

Alex

HI Alex, welcome again to the forums. I have spoken with people that said they thought their limited ROM was permanent only to find out that it improved after starting a TNF. I"m not on a biologic, so I'm not speaking from personal experience.

My ROM is limited and there is fusing is all along spine including neck. For me, exercise and yoga improves my ROM. For me, I feel that the exercise and yoga helps me utilize the ROM I have and helps maintain posture in the long term. you may have seen photos of people with severe fusing in a position that makes looking ahead impossible. I believe that wont happen to people that are able to start effective treatments within the first ten years of symptoms.

There is low dose CT scan that shows very small details of syndesmophytes. I'm only aware of NIAMS that does this as part of an AS study. You may see if the study is still open on clinicaltrials.gov. search Michael Ward.

Even if you could see the fusing, I'm not sure that would change the recommended treatement of exercise.

I'm not aware of studies that show SSZ is effective for spine, including the neck. I believe it's mostly used for skin and periphery joint issues.

hope this helps.

Another thoughts, if you want to talk to others with AS, the education/support groups are meeting via zoom. There are lots of great groups around the country. I'm in the Los Angeles group and we meet the 2nd sunday of the month from 2pm - 4pm. Since it's zoom, you can join any group's meeting.

Hi Alex

I’m happy to be here to help. I recall how difficult the time around diagnosis is and all the questions that I wondered myself too.

Between January 2020 and April 2021 I was on the AIP diet. I made a couple of exceptions at a few special occasions for general Paleo/non-inflammatory foods which went fine. The first 3 weeks on the strict AIP were the most challenging with some GI changes, random food cravings (especially sugar and saturated fat), and some occasional tiredness. Especially when I had a food craving I tried to distract myself by starting listening to some music, going out for a walk, or just doing something to distract the craving until it was less impactful.

After the first 3 weeks it was awesome. Anxiety was gone, energy levels really stable, inflammation results in low normal range (w biologics simultaneously), and my general sense of well being increased. A seasonal cough that I used to have every winter for 15 years was suddenly not coming back at all anymore. Best part was that when someone else indulged some processed normally well tasting food I didn’t even crave it! It was so easy to abstain at that point. I lost a bit of weight but got a better overall body composition.

A normal diet day would look something like this

Breakfast: Soup based on bone broth/cooked wine/fish sauce or salt/spices/+ vegetables, herbs, squeeze of lime and sometimes meat. You can vary this a lot according to your favorite flavors and get really skilled at cooking awesome soups to start your day.

Snacks: carrots and blueberries

Lunch: usually variety of vegetables + meat (today I had paleo gyros and broccoli)

Snacks: oranges / fruit

Dinner: varies but usually salad, smoothie, guacamole or something like that. A bit more elaborate Friday-Sunday dinners

I am also taking vitamin D, omega 3, magnesium daily. Plus collagen and organic boswellia. I use neck heat pillow to relax muscles and stiffness.

My ROM up / down is about 30-35 degrees up and 70-80 degrees down. My down motion used to be a lot worse and more painful before biologics + diet, now it is basically normal. My up motion just improves marginally but it was worse a few years ago. I believe i have previous structural damage which limits up movement specifically.

The most important thing for me with using biologics is that my smile and laugh started to return more and more over time. Some days when I’m off from work and enjoying myself with family and friends I don’t even remember that I have this disease. Those days are so wonderful. The months leading up to my diagnosis was really hard with neck getting worse. So there is hope to be in a better place after you biologics treatment + lifestyle changes.

Take care
PsSpa

Hi there

Rahmba I think I should be close to 10 years of the first symptoms so hopefully I am still on time, base in my previous x ray my spine is straight in the neck and almost normal in the rest, I think that was one of the causes of the diagnostic delay because the damage is mainly in the neck. You are right about the treatment I am going to need biologic regardless there is fusion or not so I am not going to push for a ct scan. Where I can find the links for the zoom meetings? I am in Florida.

PsSpa I am going to include the bone broth in my regular diet, do you made the bone broth or you buy it from places like Walmart or amazon?, I was reading some people buy it but also other people said that it contains preservants.
I think that carrots contains some starch so don’t know if include it as snacks.

Thanks both of you and I will report my progression

Alex

Edited: Do you think gelatin is a good food for AS? I try to eat it everyday first time in the morning

Hi Alex

Most often I cook my own bone broth. Debone a whole chicken, paraboil, and then cook a couple of hours in instapot with water, cloves, ginger, salt, and bay leaf. Some star anise (not AIP) and honey for extra flavor. Some people roast the bones in the oven first. Fish bone broth (boiled with the head and fins) is really good as well, especially if cooked with some white wine and lime. The cooking process boils away the alcohol. Although the fish bone broth doesn’t smell too good while you boil it, it tastes a lot better in the final soup product. :-D Unless you don’t like seafood.

I also buy Collagen Great Lakes that I add to my daily round of green tea. A couple of scoops. I am not an expert but some products may be lower quality, especially big box gelatin. Here is an in depth article by the paleo mom:

https://www.thepaleomom.com/gelatin-vs-collagen-vs-bone-broth/

About carrots, it seems to be listed as a starchy vegetable but if you look at the actual nutrition carrots have just marginally higher carbs than broccoli and about the same amount of fiber. At the same time, carrots have about half the carbs of potato/sweet potato. So it is a bit of a greyscale. Carrot is a good plant source of vitamin A which is important for healthy T-cells (one of our immune system’s infection and cancer fighters).

Although I don’t really eat much (even non-grain) bread, rice, potatoes etc anymore due to high starch. Don’t miss it in the diet at all, high carbs low nutrition typically.

Sorry I can go on about nutrition and food all day. I really got an interest in cooking, nutrition, functional health etc after starting the Paleo/AIP diet 2 years ago ^_^

Keep us posted about how it goes!