My OCD story - failed MF, conservative treatment, and finally DeNovo

[Namelike]

Hello everybody,

I have been reading this forum for a while now and wasn't planning on doing a write-up of my personal experiences. However so many of your posts have been hugely informative and inspirational to me, so I am writing this in hopes that my story will also help someone, somewhere, at some point. I'm a 28 year old male, once very active (weightlifting, running, boxing, swimming, softball, etc.), and this OCD has pretty much brought my active lifestyle to a halt. It has also created a tremendous strain in my life both emotionally and with work, as many of you have also probably experienced.

Here's the background. Recovery updates will come in subsequent replies.

The short story:

My OCD went undiagnosed for almost 2 years, I had a MF which was successful for a few months and then the pain returned, I tried conservative treatment which failed, I tried just a bone marrow graft, and then most recently (this week) I had DeNovo NT implanted. So 3 surgeries and 3 rounds of PT in 4 years.

The long story:

I rolled my ankle REALLY bad in November 2010. It never quite got better, so I went to my family doctor to get an X-ray. He sent me straight to PT without imaging, I wasted $1500 on that, and then finally in 2012 I got an MRI which revealed an OCD on my talar dome. I'm really wishing I knew to see an orthopedic surgeon earlier, but I guess hindsight is 20/20.

In September 2012 I got a microfracture and left lateral ligament reconstruction. Horrible recovery as many of you know. 2 months on crutches (in a hard cast), and then another 6 weeks in a boot. After PT, I felt great. By March 2013 I was 100%.. running, playing basketball, softball, and boxing again.

This lasted for about 3 months, and then the pain came back. Not the same pain, more around my Achilles, and I assumed it was tendinitis. We tried conservative treatment - 4 cortisone shots, a bone growth stimulator to use during sleeping (at the recommendation of OS #2), and good insoles - but none of it worked for more than a few weeks.

In December 2013 I went back to OS #1. After getting another MRI (here: http://imgur.com/a/fZZg5), he recommended the OATS procedure from my knee, and said there are no other options. I actually scheduled OATS for August 2014, but something didn't feel right about it, especially because he wasn't making much of an effort to diagnose the pain near my Achilles (which was causing about 75% of my pain). I decide to research other options... luckily I found this website and learned about DeNovo NT.

As many others have, I drove a few hours to visit Dr. Schon back in August. He said I was a great candidate for DeNovo, but because of the pain I was having (definitely still present from the OCD, but also in my tendons) and also me wanting to avoid taking off 2 months from work, he recommended first trying a bone marrow graft (which is a quick recovery) before going with DeNovo.

I got the bone marrow graft in September, with no relief. As a result, this past Monday 12/22 he implanted 2 packets of DeNovo, cleaned out scar tissue, and he also released two tendons. I'm non-weight bearing for 6-8 weeks then will have a boot for another 6 after that. I'm going to be super conservative with my recovery.. this is my third surgery and I really hope it will be my last!

Dr. Schon has been incredible and I recommend him to anyone with an OCD, even if he's a drive or flight away. He always spends as much time as I need, makes it a point to review images with you and explain his findings, and is known as one of the top DeNovo implanters. Both him and his office are really top notch.

[Namelike]

Week 1

I have been instructed to "take it really easy" for the first 2 weeks. After 2 weeks, I will lose the soft cast and get a boot, but I will still be non-weight bearing for another 6 weeks.  I ordered a knee roller/walker to use when I decide to leave the house again. I bought one outright for $200 on Amazon and plan on selling it for about $130 when I'm done with it. Then I will be gradually returning to WB in the boot after that.

12/22 (surgery day): had a pretty late surgery, didn't end up going until about 4:30. The procedure took 2 1/2 hours and I ended up getting out of the hospital at around 8:30. Didn't get home until 11:00. Was pretty doped up and don't remember much except being nauseous and hurting.

One nice little touch is that he gave me a bunch of pictures he took during the procedure. Here is my OCD before/after DeNovo was applied (I think the top picture is after debridement of the OCD?): http://i.imgur.com/ko4J785.png. SUPER cool to read about DeNovo for such a long time and finally see what it looks like in action.. I really appreciated him doing this.

12/23: I was hurting pretty bad on day 2. It felt like my foot was going to explode out of my soft cast. I remembered experiencing this with my MF and knew it was normal, so I just told myself to deal with it. My advice to everyone is get ahead of the pain with your meds. I started taking the oxycodone every 4 hours after my surgery, and my mom woke up in the middle of the night to give me doses at 11 pm, 3 am, and 7 am. I didn't even try to stand up at all on day 2 because it felt like all the blood was going to burst out of my foot if I did.

Rest of the week: Every day has been better than the last. On day 5 now I am weaning myself off of the meds. Today I took just 1 Oxycodone and tomorrow I probably won't take any. My ankle is still understandably sore. It doesn't feel swollen with it elevated, but if I stand up to go to the bathroom it still swells up. (EDIT 7:15 pm: my ankle is hurting a lot again, particularly at the site of the defect. I can't tell if the pain is at the bone or on the skin where the incision was. I hate that for the next 6 months I'm going to overanalyze every little pain I feel. Regardless, looks like I shouldn't have stopped the meds.. starting oxy again for another day or two). I expect to feel my ankle swelling when I stand for some time.

Next week: I'm planning on being in sort of a steady state for the next week or so, in bed with my foot up for 99% of the day.

Misc. thoughts: I didn't realize how big of an effect this has had on my life until now. The prospect of finally being able to be active again is amazing, and I can't believe that it is potentially just 6 months or so away. I literally forget what it feels like to walk without pain, let alone run and play sports. I find myself incredibly worried about messing this up, like misstepping with the crutches once and putting pressure on my foot and ruining the cartilage graft. I'm admittedly a hypochondriac, if you haven't gotten that already, so I'm going to try and keep telling myself to just do what he tells me and everything will work out. I'm really looking forward to seeing how my recovery progresses throughout the winter and then the spring.

[wch94]

Sir, you and me have been living the same exact lives except I got my surgery done by Dr Schon a week before you did. Pretty much everything you said applied to me. Me and my mom flew from Columbus to Baltimore to get my ankle operated on for the Denovo procedure. Same time for the procedure and I got three packs of denovo put in. I've had the same situation with the blood flow to except I can now keep my foot down without it bugging now. Just two days ago I stopped taking the Oxycodone but the last few days I used it I only took a couple during those days. I also got a walker/scooter and it's been extremely useful. In two days I see my orthopedic here in Columbus Ohio and I will be put in a boot instead of this wrap, thank god. This wrap has been so annoying. It slides down constantly because the nurses didn't do a good job of wrapping it. I have very minimal pain right now and in fact I actually drove some today, even Though it was probably not a good idea. I'm having a lot less pain than my previous microfracture surgerys gav me.

[Namelike]

That's crazy we're on pretty much the same path! Our L. Ankle MRIs even look almost identical. Hopefully it'll be a success for both of us.

Dude I just read your story. OCD in each ankle.. that's brutal, I can't imagine. So did literally every step hurt for you? I remember before my first MF it wasn't THAT bad. I could walk fine, but I wasn't able to run, and sometimes I would get shin splints if I walked too much too fast. Before DeNovo, literally every single step (with my left foot) hurt, and every once in a while a specific step would hurt so bad my entire leg would buckle under me.

I'll be reading through your thread as well.. looking forward to hearing what the next week ahead of me will be like, haha. Good to know I should able to put my foot down in a week. Thanks for the advice.

[Namelike]

2 Week Update

For the past week I have been in bed with my foot elevated 95% of the day, and I left the house just once to go to CVS. Even now at week 2, I still feel swelling when I stand up. My pain got pretty severe (like 9/10) at one point last week after I stopped the oxycodone too early - if I stood up at all it felt like my incisions were going to burst - but my pain improved to maybe a 2 when I got back on the meds. I finally totally weaned myself off of them at the 17 day mark, and the ankle feels pretty good now.

My advice to everyone getting ankle surgery - get a knee roller! I got this one (http://amzn.com/B00MECBY20) from Amazon for around $200, and I plan on selling it on Craigslist when I'm done with it. This is my 3rd surgery, and using crutches for the last 2 was awful. This on the other hand is a total life-saver. I use it whenever I'm downstairs, and the one time I went out it was amazing. Looking back, I'm wishing I got the one with the big wheels in the front because this isn't very good at going over bumps/obstacles. I think it's meant to be used mostly indoors. Regardless, it's infinitely better than crutches.

I had my 2-week follow-up on Wednesday. They removed the soft cast and wrap and everything is looking great - the incisions were clean and there wasn't any beeding. However in just 2 weeks my leg has pretty much withered away. I will be in a boot (I can finally shower normally!) non-weight bearing for another 6 weeks, then slowly ramping up my weight bearing with a boot for 3 to 4 weeks, then I will be walking "normally" again. I had surgery on 12/22, and this will bring me to 3/16 before I can walk without a boot.

I still plan on staying in and taking it easy for the next few weeks. They told me to start doing deep knee bends (squats) for 20 minutes at a time 5 times a day so I don't get stiff and develop scar tissue. The night after the appointment I could barely bend at all. Now, 3 days later, I can bend 10-20 degrees. So it's going to be a while before I have full range of motion back but I'm improving steadily.

Lastly, I bought a few supplements to help with cartilage growth. Not sure if they'll help, but they can't hurt. I got a multivitamin, calcium, Osteo Bi-Flex (http://amzn.com/B00B18A1W2), and Collagen Hydrolysate (http://amzn.com/B005KG7EDU).

[The Lablady]

Thank you for so much info! I was diagnosed with ocd, left ankle 2 weeks ago.  I m trying to learn all I can and be prepared before my appt with dr. Schon on April 1st. 

I'm not good at all with pain, frankly, I'm a big baby! So this is going to be a nightmare for my poor husband.

Can you tell me how long after your initial consult were you scheduled for surgery?

Again, thank you for all of the detailed info, and I hope you continue to feel better and get your life back! 

[Namelike]

Sorry to hear about your diagnosis but glad to hear you're going to see him! He's great. If you're getting DeNovo, it's totally dependent on when they can get the graft because it does come from a cadaver. Make sure you schedule the surgery while you're in the office as soon as you decide you're getting surgery. If I had to put on amount of time on it, I would say you'll probably have to wait about a month - maybe more, maybe less.

Thank you, let me know if you have any other questions.

[ocdnetadmin]

Namelike, this is a really detailed writeup. Thank you for sharing your experience.

Best of luck and please keep us updated!

[Namelike]

Thanks Alan!

6 week follow-up
I'm a little late on this update, as I'm now in my 8th week, but I recently had my 6-week follow-up with Dr. Schon. Recovery has been going slowly but very well. Even now after 7 weeks I still feel my foot swelling a bit when it's down, and I still feel pain for no apparent reason occasionally, but he said this is all normal. I'd say the biggest noticeable improvement happened in the 4th and 5th weeks, when I finally became more comfortable being up for more than a few minutes at a time. I'm still sleeping with my boot on because I'm worried about tweaking it while I'm sleeping, but I can finally sleep in any position I want - I was sleeping on my back for 5 or 6 weeks.

In terms of activity, the knee scooter has been a life saver for longer distances, but I still use the crutches for short walks or when I don't feel like getting the scooter out of my car on one foot. My deep knee bends have been going well. When I first started I couldn't bend even 1 degree, but now I'm getting pretty far down and it feels good.

I am going to be non weight bearing for another week, until 2/16, then I will be walking in a boot until 3/16. There's not much else to write about. Things have been pretty steady-state and improving slowly since week 2 or 3. However I'm counting the minutes until when I can walk again, and hopefully this will be the last surgery I need!

[BLT]

Thanks Alan!

6 week follow-up
I'm a little late on this update, as I'm now in my 8th week, but I recently had my 6-week follow-up with Dr. Schon. Recovery has been going slowly but very well. Even now after 7 weeks I still feel my foot swelling a bit when it's down, and I still feel pain for no apparent reason occasionally, but he said this is all normal. I'd say the biggest noticeable improvement happened in the 4th and 5th weeks, when I finally became more comfortable being up for more than a few minutes at a time. I'm still sleeping with my boot on because I'm worried about tweaking it while I'm sleeping, but I can finally sleep in any position I want - I was sleeping on my back for 5 or 6 weeks.

In terms of activity, the knee scooter has been a life saver for longer distances, but I still use the crutches for short walks or when I don't feel like getting the scooter out of my car on one foot. My deep knee bends have been going well. When I first started I couldn't bend even 1 degree, but now I'm getting pretty far down and it feels good.

I am going to be non weight bearing for another week, until 2/16, then I will be walking in a boot until 3/16. There's not much else to write about. Things have been pretty steady-state and improving slowly since week 2 or 3. However I'm counting the minutes until when I can walk again, and hopefully this will be the last surgery I need!

I'm feeling all giddy inside reading this stuff. I'm glad to have connected with you all on this forum. My still feels swollen when I put it down, but no where as bad as before.

[Namelike]

Good to hear! Patience is a virtue, you'll be fine.

9 Week Update

And I'm walking! I started taking a few steps here and there during the 8th week. I started with the help of the crutches for the first few days, then slowly put more and more weight down on the foot until I could walk without the crutches. Kind of like working my way off of training wheels. Pretty painful once I was only on my foot but I had to start getting used to weight bearing. By the beginning of week 9, only the first few steps hurt then it felt better after that. Now, late into week 9, I'm using a cane and walking farther distances with not much pain at all. The only pain I'm feeling is on the outside of my foot, I think because it's weak and isn't used to weight bearing after 8 weeks off of it. I will continue to be increasing weight bearing and will hopefully work my way off the cane by week 10. I'm still sleeping in my boot mostly out of fear of torquing it unintentionally.

[BLT]

Good to hear! Patience is a virtue, you'll be fine.

9 Week Update

And I'm walking! I started taking a few steps here and there during the 8th week. I started with the help of the crutches for the first few days, then slowly put more and more weight down on the foot until I could walk without the crutches. Kind of like working my way off of training wheels. Pretty painful once I was only on my foot but I had to start getting used to weight bearing. By the beginning of week 9, only the first few steps hurt then it felt better after that. Now, late into week 9, I'm using a cane and walking farther distances with not much pain at all. The only pain I'm feeling is on the outside of my foot, I think because it's weak and isn't used to weight bearing after 8 weeks off of it. I will continue to be increasing weight bearing and will hopefully work my way off the cane by week 10. I'm still sleeping in my boot mostly out of fear of torquing it unintentionally.

I just started weight bearing on Feb 26th, and it's a much better feeling to be "walking" instead of hopping. I am wearing a boot now and so far so good. I am supposede to stop using crutches in two weeks!

[Namelike]

15 Week Update

Hey all! Been a while since I posted. I was walking in the boot from weeks 9 to 12 - it was pretty slow-going before I could comfortably walk. My entire foot would feel sore and would be pretty swollen by the end of the day. I'd say the big turnaround came at week 11 when I finally felt 100% comfortable and pain-free walking in the boot without a cane. There was pretty much no limit to how much I could walk and I wasn't walking with a limp anymore. I was counting the days until I could walk without the boot, but I knew my mobility would decrease again without it. Just a note, I slept in my boot until the day I took it off. Not worth the risk of damaging something in my sleep.

I finally began walking without the boot 3 weeks ago, on 3/16. I was amazed when I took it off - even though my foot and leg were incredibly weak and could barely sustain me standing, I actually felt absolutely no pain in my joint for the first time in a long time. I spent the first few days in the boot for half the day and without it for the other half, and then after those few days I was totally boot-free. Realistically I should have eased myself out of the boot even longer, but I was too excited to not use it anymore.

In the middle of week 13 I started feeling pain in the area where my tibia meets the top of my foot, and it worsened until it was very painful to walk. No pain in the joint still, just in the surrounding areas. My doctor advised me that it was tendinitis and to wear my boot for another week until the inflammation receded. I think what happened was that my foot and leg were so weak that they couldn't sustain me walking and my tendons had to compensate. If I tried to do a calf raise at that point I wouldn't have been able to get myself off the ground at all, so surely this would cause issues when trying to push off the ground while walking. I also think that I was so used to my foot being at 90 degrees in the boot that even after getting the boot off I would still flex my foot to keep it at 90 degrees, straining that tendon. Good news is I've been going to PT 3 times a week and my leg has been getting stronger and much more flexible - I took the boot off again 2 days ago and there is no pain anymore.  I am still walking with a limp because I'm so weak, but it doesn't really hurt.

I'm finally back to working out, which feels just incredible. I'm doing pushups/pullups/free weights in my room on some days, and then swimming on others. I I have been instructed not to straighten my foot past 20 degrees because it will expose the OCD and potentially damage the DeNovo cartilage, so I'm using an ankle brace and also a pull buoy to completely take my legs out of the equation. So happy to be working out again, and I'm finally eating healthy again, so I'll be back in shape in no time. I have also been wearing a night splint while sleeping to ensure I don't straighten my foot past 20 degrees.

[BLT]

So overall it seems like there's been good news for you. I'm glad its pain-free in the joint. I'm the same - the ankle itself no longer hurts, but the surrounding area has some pain, although bearable because it's not shooting pain. I already started PT, but I suspect another few weeks before things start to feel normal again.

[Namelike]

Yep! Doing well. Sounds like we're in the same boat here.

16 Week Update
Feeling incredible now 4 months in. Absolutely no joint pain with walking. Not even an occasional twinge. My foot still gets considerably sore by the end of the day if I'm up on it too much, but no serious pain. The only pain I feel during walking is in the bones on the top of my foot, I think still from my foot muscles just being pretty week and having not walked for so long.

I'm careful not to carry anything heavy or do anything that would stress the new cartilage that is still setting in place. I'm now working out with dumbbells in my room and swimming with an ankle brace 4 days a week, and going to PT 3 days a week. I'm also still sleeping with a night splint to prevent unintentionally straightening my foot past 20 degrees. I will do this through 6 months.