Bilateral OCDs in Ankle - The Journey Begins

[Jess232]

Hi all,

First and foremost - many thanks for sharing your stories and experiences in this forum. I was recently diagnosed with bilateral OCD in the ankles, and was feeling panic at the lack of information/resources online until I came across this community - what a godsend!

I thought I'd similarly start a post to help document my experiences with this injury in case it's helpful to others.

10 years ago, I was a pretty hardcore athlete doing distance running, basketball, martial arts, climbing, etc, and had my fair share of ankle injuries (sprains in both ankles). Everything seemed to heal fine, with the exception of occasional 'catching' or 'pinching' in my right ankle, but I didn't think much of it. Over the last few years, I've noticed I've slowly developed chronic ankle instability in both ankles - no significant pain, just a feeling of general weakness, and a dull achiness/swelling after walking a lot during the day (my job has me on my feet walking 5 – 6 miles per day). It wasn’t until recently that I started worrying something more serious was going on…

Earlier this year my right ankle started getting random minor ‘sprains’ pretty frequently (sharp sudden pain while walking on flat surfaces, etc), which seemingly improved with rest and ankle strengthening exercises. However, one day during a calf raiser exercise, it suddenly collapsed with sharp shooting pains that repeated when I tried walking on it afterwards. XRays and an MRI later, I learned I have bilateral OCDs in the medial talar shoulders – stage III on my right (12mm, unstable detached fragment), and what appears to be stage II on my left (MRI pending). You can clearly see them from the XRays alone. I was shocked I could have injuries like this without realizing it, I feel like the pain did not correlate with the severity of the injury until more recently for the right ankle.

I was placed in conservative treatment for my right ankle (6wk NWB in a hard cast followed by gradual weight bearing/PT), and in the meantime, have been consulting with several specialists about their thoughts on surgery, thanks to the recommendations others have shared in this forum. So far I’ve seen Dr. Drakos and Dr. Kennedy - both were great consults, they were so kind and professional and extremely helpful in answering my questions. Both also suspected my injuries may have a congenital root cause, with further advancement/injury from sports traumas, and recommended OATS for my right ankle (Dr. Drakos in particular noted the lesion looks larger than what was indicated in the original MRI report – possibly as large as 18 mm, and Dr. Kennedy mentioned I need ligament surgery as well during OATS to help stabilize the ankle/prevent a similar injury from happening again). Dr. Kennedy also recommended I follow up with Dr. Ferkel for his opinion as well, and to see if I’d be a candidate for MACI.

In the meantime, I’m trying not to panic, but I’m just feeling in shock and fearful of what the future has to hold (in terms of physical / mental health, possibility of needing to adjust career, financial implications of all of this)… I’m sure many in this forum can relate. Trying to stay positive and optimistic, and take things day by day. Will share more details after I meet with Dr. Ferkel!

Also – I came across a recent publication about non-operative/conservative treatment, and the recovery stats were much more promising than earlier reports. I think my right ankle OCD may be too far gone for this, but thought I'd pass it along to the group. 

https://journals.sagepub.com/doi/full/10.1177/2325967120924183#

Thanks all!

[RugbyOCD]

Thank you for sharing!

I recently underwent fixation and microfracture surgery in my left ankle (2 weeks ago). It was a longstanding issue, but over the last year a similar pain has begun in my 'good' ankle.

I too suspect it may be congenital. Have you received any advice on this and what you could do to prevent them getting worse/reoccurring?

[Jess232]

Hi RugbyOCD, thanks for your message - wishing you a smooth recovery and that your left ankle feels better soon!

I'm sorry to hear a similar pain has begun in your right ankle too. In hindsight, I should have asked more questions re: congenital root cause during my prior consults, but from my understanding the bilateral nature makes this suspect. Prior docs/physical therapists have also told me that I have unusually flexible joints, which makes me wonder if I have naturally poor ankle stability that was perhaps made worse by sports injuries.

For preventative, I haven't heard much advice so far - if I'm lucky and don't need surgery (seems highly unlikely, at least for right ankle), my podiatrist recommended PT+orthotics in the future as a maintenance strategy, to strengthen my ankles and hopefully prevent the OCDs from getting worse. She advised I'd need an MRI every 6 months or so for monitoring. If I go the surgery route, Dr. Kennedy advised that ligament surgery performed alongside OATS could increase my right ankle stability and hopefully help prevent future injury. I'll let you know if I learn any more advice from my upcoming visit with Dr. Ferkel!

[Jeremy423]

I'm sorry you both are going through this now. I really hope you have uneventful recoveries.

I'm new here, but I had an 18mm stage 5 OCD in my left ankle diagnosed in 2007, followed by OATS in early 2008. I also had what sounds like the ligament surgery that Jess would have and that because the OCD was almost certainly due to ankle sprains/injury. FWIW, it was definitely a roller coaster recovery when I was in a similar situation and it wasn't a linear thing. Sometimes things felt better. Other times things felt worse. It took a good 10 months before I was cleared for activity again because it didn't look like the graft was healing well, but then one day it had healed. I luckily haven't injured my ankle since I had the OATS surgery and I can think of a couple times where the ligament surgery probably saved me from sprains, so I think that definitely helped.

As far as advice goes, I was a big distance runner back in 2007 and was advised to give that up by 2 orthopedists to prevent re-injury and reduce wear and tear on the ankle, so I did. I've also gone to PT multiple times over the last decade and that usually helps loosen things up. Some mobility work (lacrosse balls and stretching) help as well and I'm a big fan of icing my ankle after most activity. I also pay a lot of attention to the type of shoes I wear and when they start to wear out. My heel tends to hit on the outside, so that's where they wear out first. It's also probably why I sprained my ankle so much. Different kinds of running/cross-training shoes can help with pronation issues depending on what's going on there. I'm also big into powerlifting now and my lifting shoes have an almost 1" heel drop. I use to wear Converse All-stars a lot, but they provide ZERO support and my ankle hates them. I was also dumb for a short while and tried out minimalist shoes.

What I'm mainly saying is listen to what your doctor(s) tell you and listen to your ankle tells you. Personally I wouldn't train, exercise, or play through any kind of ankle pain anymore. Rest is key, but it's also great to have alternatives so you're not going insane from lack of activity. Biking and swimming tend to be great for me when my ankle acts up since they keep the joint strong without the pounding of running or the joint compression of powerlifting. I love weight training (especially low bar squats) because it's keeping the joint healthier and surrounding muscles stronger. I've also gone through periods of inactivity and that definitely makes my ankle tighten up and the surrounding muscles get achy. "Motion is lotion" is the real deal.

Of course, take all of that with a grain of salt because everyone's different with different capabilities, limitations, and injury histories.

[RugbyOCD]

Thanks Both,

I'll keep you both updated on my recovery. I had been advised to use orthotics as well, although due to the need to wear them for the rest of my life it puts me off slightly. Mainly because I walk around my house barefoot a lot and try to lift weights without shoes on (Not sure this is a good idea after going through this forum).

In terms of my surgery, I haven't actually seen many other people on this forum go through the fixation procedure. Given the defect was 7 years old, I am a little worried it won't heal correctly. My surgeon (Dr Hilt based in the UK) did say that if it fails OATS will be next. What is a little concerning is that my bad ankle had become less symptomatic as I managed it. I was actually able to play Rugby as long as it was at a lower less intense level, and only once a week with limited training. Before the surgery, my doctor told me he wouldn't perform the op if he thought I would be worse off and expected me to return to a higher level of rugby. But post-op he suggested he didn't expect me to ever play again... This was obviously very frustrating given I wasn't feeling a great mount of pain prior to the op

Jeremy423 - have you done any kind of high impact exercise since your operation? I will definitely lay off rugby over the next year and try to pick up cycling/ swimming, but if I can't play rugby ever again, to say I would be hugely upset would be an understatement. Have the lifting shoes helped you? I mainly do squats and deadlifts barefoot as I was told this stops my ankles and knees dropping inward, but I am open to suggestions when I can lift again. What really improved my ankle over the last 2 years was taking up weight training - I credit this with allowing me to play rugby at all (I took 2 years off after the latest ankle sprain in 2016)

Thanks again both!

[Jess232]

Hi both,

Thanks so much for your support! RugbyOCD, I'm sorry to hear about the feedback you received from your doc regarding return to rugby - I'm sure that's frustrating, especially post surgery. Hope your recovery is going smooth and that you're feeling progress with time!

Jeremy423, thanks for sharing your experience with OATS (and advice in general!). OATS recovery sounds tough but it's great to hear you had a positive outcome. I'm sorry you had to give up running, but it's awesome to hear you found other hobbies that you enjoy. I've always defaulted to running for cardio, but am planning to give that up for sure - if I can just get through everyday life without ankle pain I'll call it a win.

Just thought I'd share a quick update - Dr. Ferkel ordered a few more diagnostics, and it turns out my right ankle OCD is larger than the original MRI diagnosis suggested, clocking in at 1.5cmx1cm. To my surprise, my left ankle (which has had minor pain/symptoms up to this point) has an OCD that's even bigger - 1.7cmx1cm. So much for having a 'good' ankle haha. Both are on medial talar shoulder, and involve bone injury (~5-7mm depth). I'm panicked at the thought of having to deal with two of these, especially since they seem fairly large and in a non-ideal location... what a mess.

But I'm feeling thankful to be in great hands - I'm hoping to schedule surgery with Dr. Ferkel in the next month or two. It sounds like a long road ahead, but I'm holding on to hope I'll walk normally without pain (and Aircasts!) again someday. For someone who is extremely risk-averse and worries about everything, this has been a humbling (and rather overwhelming) exercise in managing anxiety. I came across an prior post from BLT who described recovery as a 'gift of time to focus' - thankful for all the pieces of wisdom on this forum. One day at a time..

[Jess232]

Well, surgery is booked! The plan is debridement + microfracture + bone graft from my hip + bone marrow aspirate + micronized cartilage (biocartilage), all done arthroscopically on the more symptomatic ankle with the "smaller" OLT. Feeling nervous about the pain afterwards and recovery process, but thankful that this is still an option in place of a more invasive procedure. Will post more throughout the process!

[RugbyOCD]

I hope all goes well Jess!

I'm now walking around a bit which is nice. I can't go too far or too fast, but it's nice not relying on crutches around my house. I have recently started having a bruise like pain at the op site though - has anybody else had this and is it normal??

[Jess232]

Surgery and Post-Op Update (~1 week):
Wow, surgery is a tough process! My surgery scope expanded a bit to include ATFL/CFL Brostrom ligament repairs in addition to addressing the OLT. Luckily, post-op has not been as painful as I was expecting (I imagine thanks to the arthroscopic approach). I received a leg nerve block before surgery, so upon leaving the hospital, I only felt pain from my hip. Once the nerve block wore off (~24 hours later), Percocet made the rest manageable. 

~1 week out, I actually can't feel much pain from the OLT on the medial side; most of the pain/discomfort is coming from the lateral side where the ligaments were repaired, followed by my hip. My ankle is still swelling quite a bit, but I'm hoping this resolves more in the next week or two.

RugbyOCD, how's your ankle feeling? Any luck with the bruise like pain?

[RugbyOCD]

Good to hear your surgery went well! Did they give you an idea on how long you'll be non weight bearing for?

The pain is still here, but it does occasionally ease off and isn't too bad. I do have an ache in it (and my knee on that side) though. Probably expected whilst the cartilage heals I guess!

[Sterfox]

Hi Jess,

Just seeing how your post op surgery is going. I just came across this thread and found to have 2 lesions (Kissing Lesions) Tibial Plafond and Talar Dome and also had surgery with Dr. Ferkel.

My surgery seemed to have gone pretty well from what he said and I never had that much pain from the surgery. I took a pain med just in case the night of my urgery but realized i never needed them because the pain was so low. Still concerned about the kissing lesion though and how it will affect the healing.

He did the bio cartilage allograft mixed with the stem cells from my hip and I'm assuming you did the same? Also did you see Dr. Eric Ferkel or Dr. Richard Ferkel?

Best,

Sterfox

[Jess232]

Thanks Rugby - it's good to hear the pain isn't too bad! I think the plan is ~6 weeks NWB in hard casts, though I'm curious to see if that may change with the added ligament repairs.. I'll report back soon!

Hi Sterfox, that's neat you found the same docs / had a similar procedure! I saw Dr. Richard Ferkel, he performed the biocartilage allograft + stem cells you mentioned along with microfracture, a bone graft from my hip and two lateral ligament repairs. I'm about 2 weeks post-op, and not much to report - pain is pretty minimal now, and swelling is slowly going down as well.

Which doc did you see? How big were your lesions, and how is your recovery going so far?

[Sterfox]

Hi Jess - My doc is Eric Ferkel (Richard Ferkel's son). My lesions were 7x6x2 located on the lateral side and did pretty much the exact same thing as you but no bone graft from the hip just stem cells from the hip and bio cartilage on both lesions. My injury was acute when I twisted my ankle and the pain from the injury was there the moment I stood back onto my feet seconds after my injury. It improved after 4 weeks but then it was lingering and never went away. Most the pain was when i would take a strive and my foot would go into dorsiflexion. Did my research and found Dr. Eric Ferkel who seems pretty optimistic about recovering from this injury. He said running again in 4 months. Not much pain but sometimes that achey feeling is inside my ankle. Best of luck to you Jess.

[Jess232]

Best wishes for your recovery Sterfox! It's great to hear the expected outcome of your surgery is returning to running (and so soon)!

[Jess232]

Post-op update (~3 weeks):

Week 0-1: Large plaster cast
Week 1-2.5: Fiberglass cast - swelling seemed to peak at Days 10-11, then slowly started getting better
Week 2.5+: Stitches are out, and I'm now in a removable splint (freedom!). The doc advised I'll be NWB in the splint until the ~7 week post-op mark, and that I should remove the splint 3x/day to do range of motion exercises (just moving foot up and down a few times, but not side to side).

I don't have any noticeable pain at this point, just a dull, constant ache where the medial lesion was, along with localized swelling in that area (like a strange bubble on the medial side of my ankle, similar to what cshires described in one of her post-op posts). The range of motion exercises are very manageable/not painful, though my range is pretty terrible compared to my non-operative leg haha, and my lateral ligaments feel really sore. Swelling has definitely improved compared to weeks 1-2! I still need to elevate my foot most of the time to avoid the medial ache intensifying, but my ankle looks way more normal / less swollen than I expected it to at this stage.