Pitac, I very much want to read the answer of others and to hear more from you.

From what I have read, scientists tend to think that bone marrow chondroid lesions are not painful. What is your experience?

I've only seen research about this. In AS samples, the woven pattern of cells typified findings (is a differential) in severe AS patients. From what little I know, and like you wrote, they are classified as benign tumors. Studies of MRI and x-rays have also seen this woven bone cells in the affected SI joints of those with AS.

So very glad you invite a conversation about this.

One article comes to mind in the Nature magazine of 2021,
"Chondrogenesis mediates progression of ankylosing
spondylitis through heterotopic ossification." Now I need to re-read it. There is a category of medications that helps treat this, but, I don't remember what it is. There are many articles about the origin (pathogenesis) of chondroid lesions. If you find a good one, let me know.

When I'm in pain, like today, I tend to to read research papers, when my eyes are not overwhelmed or too dry.

Hope you are having a better day.

A lot to unpack in your questions. First, I started using hicking sticks in 1999. They do help. I will use crutches if lots of standing is required. I will use scooter when unable to walk yet I must get food shopping or gift shopping done. Right tool for the right job, but, always take time to stretch and strengthen and keep endurance.

Surgeries that helped were: 2 microfracture/debridment surgeries of right patella, THR right pelvis (lateral incision), and especially the more recent cervical laminoplasty, open gate type, for C3-C6, and roral of C7. The cervical surgery made invaluable space for the impinged spinal cord and made it possible to walk, breath, pee and poop (no more diapers), and have mostly normal heart rhythm. The other surgeries, not so much.

Yes to always double check surgery options, their risks, surgeon's success rate and type of failures (might be staff or facility issues), what is needed by me to help gain best outcomes, etc.

Having head to toe major flare-up today. I'll respond more later or tomorrow.

Love to read what you write and lovely picture of you hiking in the WA woods.

@A MySpondylitisTeam Member, Thanks tons Brian! I am so glad I found you.🥰 From the other forums I am also on, but less so now, I was beginning to think that I'm the only person doing any research. I, too, spend a good bit of time doing that when I can't do much else. I noticed that you do that and that is why I added you to my team. 😊

I don't think the lesion is causing my pain. I went in though due to a good bit of pain, but mostly extreme weakness and difficulty walking with that leg. It feels like I have a tight tourniquet at the top of my leg next to my groin when I'm trying to go for a walk. After half a mile it's difficult to keep it going straight. It wants to flop over in front of the other leg. Also, it feels like I'm dragging a heavy weight. It was feeling like I was walking in waist high water. My Ortho told me that it is due to a torn labrum across two quadrants and suggested arthroscopic surgery. I went online and found some physical therapy exercises to manage it. Its still attached so I'm not doing surgery unless and until, and maybe not even then, I need a full hip replacement. We shall see. I do plan to have it monitored though once a year.

That article sounds interesting. I'm going to look it up. Thanks again Brian! 🤗

On a different note, I have definitively discovered that excess sugar causes inflammation for sure. Two small homemade gluten free Christmas sugar cookie cutouts put me into an excruciating full body flare. 😭 SHAZBLAT it all I say! No Xmas sweets or else?!?!! Now that puts a whole new meaning to the Grinch who stole Christmas. 😡

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Pitac, so glad you approach surgeries with great care. Our heads first spin when we hear options like fusion, cartilage replacement, Laminectomy, or Laminoplasty, etc, for our spine. All too often, we have to choose what the best surgeon/facility offers near us. Since we just don't know the options, we trust the medical system to be right. This is even more true in emergency medical care.

We really need an independent doctor or nurse (free of ties to insurance and health institutions) who can help us navigate the medical care jungle and increasing desert for a growing majority.

I don't know enough to make a recommendation for anyone. The only thing I can do is share what I've learned, experienced, studied, and received from the life journeys of others.

If someone has impinged spinal cord tissue caused by severe spinal stenosis within the C1 - C3 vertebrae, multiple issues are expected. Walking is just one miracle that you, Pitac, enjoy. It typically includes many nerve related heart arrhythmias, breathing difficulties, spasms all over the body, etc. I was offered the Laminoplasty, open-gate type (see Google Scholar, University medical videos, and YouTube for surgery info) and gladly received it. [Here's my answer] I wish that it had been offered 15 years ago. It would have made a bigger difference and kept me physically fit for much longer. Hope this answers your question.

On a different note, I took a detour in my reading today after coming across gender related issues. One was a few Chinese Spondyloarthritis research papers suggesting AS may cause calcification within some breast tissue and may lead to misdiagnoses. I experienced that paper as a request for more funding, reminding me that medical science needs so much research funding designated to Spondyloarthritis diseases. Our doctors need better diagnostic tools, medicines, and surgical options. We need a higher quality of life. We must fight together for it from our government and medical institutions.

Pitac, your endless river of life within you is amazing. Like so many here, you inspire me. It would be fun to gather with you and others here for an AS nature walk to treasure the gift of all life and celebrate each other at our own paces.

P.S. I'm on Prednisone for 3 weeks, for the first time. I may have written too much, yes, Prednisone has "kicked in". Hope you and others don't mind. I prefer listening/reading over speaking or writing. Mostly, I just love being with others.

You both are invaluable to me. Thank you so much. 🕊️