Over the weekend, I asked you guys on my Instagram stories if you wanted to see an overview of my upcoming surgery or my chronic illness hacks in today’s post, and it was close, but an overview of surgery was definitely the winner! (Not the worry – my chronic illness hacks will definitely happen in the next few months.) The reason why I was thinking about explaining this surgery is this is unlike any other medical issue that I’ve talked about since I started blogging. It’s definitely not new to me, but I figured that it’s probably new to all of you.
Oh, and by the way, my surgery date got pushed back to March 26 instead of tomorrow because I have an “ear infection” and it’s “protocol” because I’m “immunosuppressed” or some nonsense.
So here’s the deal: in 2001, I was diagnosed with a tarsal coalition in both of my ankles after experiencing pain in my left ankle. Essentially, both of my ankles didn’t form correctly and they were incorrectly fused. Looking back, we’re pretty sure that the pain I was experiencing in 2001 was from arthritis based on where my pain was and where the coalition was, but the tarsal coalition showed up on the x-ray and the arthritis didn’t.
Tarsal coalition is genetic; in fact, one of my grandmothers also has it. My surgeon told me that there are two age ranges where it tends to start bothering people: 9-13 and late twenties. Well, at age 26 on Thanksgiving 2017, my right ankle started bothering me out of nowhere. Everyone in my medical team who examined me (my PCP, physical therapist, and rheumatologist) was concerned. I had an x-ray; only the coalition showed up. And then I had an MRI. In addition to the coalition, there was inflammation in my bone marrow, fluid around a tendon, and cysts around the coalition.
I saw my surgeon at the beginning of January and he told me that my pain is entirely from the coalition. The other things found are from my body’s reaction to the coalition. I had a cortisone injection and was put into a walking cast in the hopes that this would calm it down.
As you can probably assume considering I’m having surgery, it didn’t calm down. I saw my surgeon in February to see how things were and he confirmed what I assumed was going to happen: I needed surgery.
I’m going to have a subtalar ankle fusion on the 26th. This is the only surgery that is confirmed to permanently help tarsal coalitions, and it has the added bonus that it is good for rheumatoid arthritis in the ankle, too. “Subtalar” refers to the bones affected; we will fuse some of the bones in the back of the foot. “Fusion” means my surgeon will put a screw in my ankle to help my bones fuse together in a way that will help my pain.
The actual fusion takes 3-5 months to complete. The surgery just gets the bones in the right position to do it. This is what we did for my left ankle in 2009, the same surgery that found arthritis damage in my left ankle. If the screw is 4 inches long like it was in 2009, then once the fusion is complete in 5-6 months, I will have another surgery to remove the screw because I am not a large person. I wear shoes in size 7.5, so a 4-inch screw does not completely fit in my ankle. My surgeon told me that they are using slightly smaller screws now, but I’ve established that I will probably want the screw removed because the screw would probably have to be 2 inches for it to not bother me, and I doubt that it will be that small.
So the fusion is entirely for the tarsal coalition. But that’s potentially not the only part of the surgery. Remember the cysts they found on my ankle in the MRI? I might be having a bone graft to fill them in. On the one hand, I don’t want to have a bone graft. On the other hand, I really don’t want to have another ankle surgery for 20 years at least, so if it’s going to happen, it should happen now. But they won’t know if that will be needed until they get into my ankle.
The recovery is … not fun. They’re admitting me for the surgery and keeping me overnight for at least one night. I’ll be on bedrest for 2 weeks with my ankle elevated the entire time. Then I’m in a cast and non-weight bearing for 6 weeks. Then it’s back in the walking cast and going from non-weight bearing to weight bearing for another 6 weeks. And the entire time I’ll be extra exhausted because my body will be fusing itself.
Oh, and I’ll definitely have arthritis and fibromyalgia flares. It is guaranteed. That’s the only thing we know for certain about my recovery. If my body is feeling especially malicious, I could also have flares of my other illnesses. For example, I would not be shocked if my POTS flipped out and they kept me in the hospital for multiple days.
The benefit of having had this surgery before is that I know that it works. The downside is that I know exactly how terrible the recovery is. The honest to goodness worst days of my life were the first 3 days after I had this surgery in 2009. But, as I mentioned, this surgery works. Having it in 2009 was hands down the best medical decision that I’ve ever made. So here’s to hoping that this recovery is a lot better than it was in 2009 and that my body is as kind to me as possible.
Thank you for all of the love and support that I’ve gotten so far!
Like this post? Check out:
Tools for Pain Management That Aren’t Medications, Why the Traditional Pain Scale Needs To Go, Pain and Cold Weather: Dealing with Chronic Pain this Winter, What To Do If a Doctor Doesn’t Believe You
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
[…] I asked on Instagram if you wanted to read a post about my surgery or my chronic illness hacks, and while the winner was my surgery, a lot of people also wanted to see my hacks, so here we are today! I might be using the term […]