Osteonecrosis, Lupus and Surgery

There’s a reason that I’ve not posted for a few weeks: Last night, I returned from a 1000-mile pilgrimage to Chicago; ‘what a wonderful vacation spot,’ you might think! Au contraire; this was what one might call a working vacation for the osteonecrosis in my ankle joints.

Osteonecrosis on a lupus blog? What’s the connection? First, I think a brief explanation of osteonecrosis is due: Osteo (bone), necrosis (death): dead bone. The death of bone structure causes bones to lose their ability to support the body, they collapse becoming incredibly painful. There are various stages of osteonecrosis, often determined by the degree of collapse of the joint.

There are many causes of osteonecrosis; basically anything that cuts off the blood supply to a bone, so that the bone dies from lack of oxygen and nutrients can cause osteonecrosis. Often, steroid medications are the culprit, or blood clots can form due to a disease (like lupus) or because of different blood clotting disorders. One might have nitrogen clots from diving, but lupus causes clot formation, also.

The doctors aren’t sure of the cause of my osteonecrosis; Is it the intravenous steroids I was given in large doses for lupus, or blood clotting disorders that I have, or a blood clotting disorder often found in lupus patients (Antiphospholipid syndrome) or fatty clots formed because of my higher than normal cholesterol. or any number of other reasons?

Whatever the cause, I needed to address the fact that I have osteonecrosis in my ankles and what treatment, if any, could help. That was the reason for my ‘trip.’ While in Chicago, I saw an ‘uber-specialist’ (that’s what I call this fellow) about the osteonecrosis in my ankles, which until now, has escaped the many treatments my pretty smart doc has thrown at it. My local doc and I’ve done everything by the book (and then some!) and still, walking is incredibly painful, difficult and the weight I’ve gained because of the painful walking only puts more pressure on already compromised ankles. ONE VICIOUS CYCLE 🙁 

I was referred to the surgeon in Chicago by another foot/ankle specialist. The surgeon I drove 1000 miles to see said that he’d be able to with a Total Ankle Replacement. Both ankles are bad, but the left is BADDER than the right ankle.

LO AND BEHOLD, though I’ve got a lot of hoops to jump through before next January (his earliest opening for surgery), ‘God willing and the creek don’t rise.’ I’ll have a new ankle in January followed by 6 weeks of COMPLETE non-weight bearing. Then, we’ll talk about replacing the other ankle! So, all in all, a VERY productive trip. 

While in Chicago, which was my home for 26 years, I arranged a meeting with another blogger who’s helped me out before. “It’s a small world, after all, it’s a small world after all…” That ditty comes to mind when thinking of my meeting, lunch and wonderful afternoon with Lois Roelofs!

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5 thoughts on “Osteonecrosis, Lupus and Surgery

  1. Pingback: A Letter from Annie Nowlin | Loopyloo's Armor of God

  2. Hey Annie sorry to here about that awful diagnosis. God willing the uber doc will do the ankle replacement and everything will be much better for you! I receive steroid shots for inflammation in my shoulder (a direct result from discord lupus) and I was total unaware of the bone disorder osteonecrosis. Now that I know this can be a possible side effect, I will ask my doctor to provide me more information.

    Tyrone Robertson

    • Thank you so much Tyrone. As far as the steroid causing osteonecrosis, steroids definitely can. But so can so many other things and docs are working hard to find out exactly what can be done. Oftentimes blood disorders cause osteonecrosis and there’s a physician who does a lot of research and still manages to find time to treat patients. Can I direct you to http://osteonecrosis.me ? Osteonecrosis can be a side effect of lupus, meds used to treat lupus, the ‘bends’ so many things. Steroids can cause it, but at the same time, I’ve read that if a skilled practitioner gives the steroid shots and makes sure he/she is getting the shots in the joint space, the effects of them is more local. My feeling is that when you get the steroids intravenously at high doses you risk a problem. But, there are a ton of opinions out there. I just know my own!

        • Tyrone, I leave Friday for Chicago and have surgery on Tuesday. I won’t be able to put weight on my foot for three months, so it’ll be January before I get home. But walking without collapse and pain is worth it!


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