Living With Arthritis and Necrosis

I have had a lot of people reach out and ask me about what it’s like having arthritis and necrosis in my ankles, and how I manage it on a day-to-day basis. I’ve decided to share a couple “highlights” about living with arthritis and necrosis damaged ankles. (You can see some the current status of my feet and the noise the damage makes here: Damaged Ankles)

In 2009, I was diagnosed with arthritis and necrosis in my ankles and throughout my feet (Avascular Necrosis is also called Osteonecrosis). Specifically, the damage is pretty bad in my talus and metatarsal regions with both feet suffering from collapses which means part of the bone in those areas of literally collapsed down.

My first surgery due to arthritis and necrosis was on my right ankle. I had a bone fragment break off my ankle and a growth actually started growing on the bone fragment! I immediately went to the doctor who referred me to a specialist who then performed an in-office test, and then scheduled me for surgery the very next day. Luckily for me, the growth wasn’t cancerous and the bone fragment was successfully removed. While the Orthopedic surgeon was removing the bone fragment, he also cleaned away additional bone debris which helped alleviate a lot of pain in my joint. I’ve inserted some pictures so you can see the bone fragment and the growth that followed. The growth ultimately started oozing which is why you see some scabbing.

My next surgery involved scoping my left ankle and repairing my big toe metatarsal. I was already suffering from severe pain in my ankle joint due to floating bone debris caused by damage from necrosis and arthritis, when my big toe metatarsal joint literally blew out to the side! My big toe metatarsal was so weak from the damage that it completely fell apart! When it happened, I was walking and I could feel it “pop”, and then tremendous amounts of pain shoot through my foot. For the most, the majority of bone debris was removed.

Unfortunately, it’s only been about three years since that surgery, and I already have significant bone debris in my metatarsal region again. I also have significant bone debris again in both ankle joints. Even normal walking can cause excruciating pain when a piece of floating bone debris lands in just the right spot. If I am having a flare-up or a “bad day” I can experience significant swelling in my ankles and metatarsal region which causes a lot of pain, and severely reduces my mobility.

I consider myself pretty lucky for a couple of reasons: 1) I was diagnosed with necrosis when I was young (19) which increases the possibility of my body being able to somewhat heal itself. 2) I’ve been able to have some of the best treatment including electrical stimulation. I really hope to have stem cell treatment when hopefully it can be approved by insurance, but that seems like to might be a while. 3) I’ve sort of “adapted” to the pain. Most days I only have mild pain, but it’s definitely manageable. Here are a couple of pictures of what my feet look like today 🙂

If you’ve been diagnosed with arthritis and/or necrosis it can be a very tough thing to deal with. However, don’t lose hope! I’m still able to exercise regularly (which actually helps) and do a lot of normal activities. It will be tough for sure, but it’s definitely worth it to keep a positive attitude and keep pushing forward!

Thanks for reading, and if you have any questions feel free to ask!

-Dylan

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Author: Dylan B Nelson

After being diagnosed with Crohn's Disease, Avascular Necrosis, Enteropathic Arthritis, and an Atrial Septal Defect, Dylan like so many other people with chronic conditions struggled to manage his health. Being frustrated with the current solutions, Dylan helped create mediswarm.com, a social health network where it's easy to meet other people with the same conditions. Users can ask questions and get real answers, see top solutions for their conditions, and get support from a community of people just like them. Dylan's ultimate goal for MEDI+SWARM is that it can become a resource for individuals who have chronic health conditions to get the help they need and to help improve their overall health outcomes.

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