Ankle OCD – new diagnosis

[ColSteve]

Hi Everyone,

First, a big thanks to everyone for their posts and to Alan for organizing this forum!!

Three days ago I got results from an ankle MRI and found out that I have a 3 x 8 mm lesion on lateral talar dome and an adjacent subcortical cyst in lateral malleous (5.5 mm) + an old partial tear in AITFL (no diastasis).  Before that I had no idea what a talar OCD was, so I have been on a steep learning curve since then -- including finding this great forum.

History:
Male, 51, CO Front Range area, active (hike, ski, triathlons), love running.
Aug 2013 -- bad ankle sprain while running, came down half on curb, outside of foot went down hard and unsupported.
Oct 2013 -- Rest ~ 2 months, then worked back to running, mostly painless, thought I was healed.
Nov 2013 -- Seemed to re-sprain ankle on hard downhill run
Dec 2013 -- Ankle X-Ray, no fracture, slightly wide medial space, DPM suspected possible syndesmosis injury, ordered MRI
Jan 2, 2013 -- Got MRI results -- my OCD journey begins.

DPM Plan: 
Ankle arthroscopy , Talus -- OCD debridement / Microfracture,  Malleous -- excise cyst, pack bone graft / cartlilage graft. 
Little explanation / time for questions from DPM, surgery not presented as being a big deal. 
Asst. said surgery could be done as soon as following Mon. morning (tomorrow) and to plan on 4 weeks NWB.   

I started web research as soon as I left Dr. office.  Quickly learned how problematic this injury is and that I needed to do some careful research before any surgery. 

A couple of key themes for me so far (among the many):
1. Many stories of limited success from MFrx surgery
2. Some glowing reports for DeNovo NT 

Based on this, I found a Denver DPM with paper on DeNovo and excellent credentials / reviews and scheduled an appt. for a 2nd  opinion. (this Fri. 10 Jan).  I am working on a list of Denver area potential docs (DPM and OS) for additional opinions.

My current condition:
Slight pain on weight bearing / walking -- bit of a dull ache in ankle/heal that gets better after being NWB.  Occasional sharper twinge of pain near outside ankle knob.  Wearing a lace-up ankle brace.  Pain seems to gradually be getting worse – I am sometimes avoiding putting weight on that leg.

Some (of the many) things I am wondering about (understanding no docs here):

1.  Timing of surgery – how fast can the condition get worse.  Are subchondral cysts the biggest risk and how fast can they grow?  I am thinking I should totally curtail exercise (already down to swimming, bike trainer) until surgery (DPM was vague on this question).

2.  DPM vs. OS?   Will I get a narrower assessment of treatment options by DPM?
-- someone told me to be careful with DPMs, as they are not MDs (cannot do OATS or need assist on harvest).
In contrast, it seems like DPMs are more focused on this condition, much of the research on it is from them.

3.  Strategies for finding best surgeon?  Is there a list of top surgeons nationally, their specialty / treatment preference and location?

4.  Contraindications for DeNovo?  I apparently have a small “dent” in corner of Talus, wondering if DeNovo not appropriate for that, because bone “fill-in” needed.

5.  Arthroscopic vs. osteotomy  -- How big a priority to avoid osteotomy – it seems so invasive?  Is it correct that osteotomy is less likely for lateral OCD compared to medial?   Osteotomy more likely for any bone graft technique?

6.  Greater than 50 year old patient --  Reduced success chances? Bad candidate for any autograph techniques?

7.  Anyone have experience with sub-cortical cysts in lateral malleous?  -- This is more prominent on my MRI than the talar OCD.  Interesting that the DPM verbally mentioned “juvenile cartilage cells” for the malleous, but not the talus (this was before I had read about DeNovo).

8. Co-occurring syndesmosis injuries?  I have hardly seen this mentioned in OCD forums – is it not common, even for severe ankle inversion OCDs?   

Sorry so many questions -- I will hopefully learn a lot more after my 2nd opinion this Fri. (maybe Mfrx is the obvious first treatment).
I look forward to sharing my story as I go forward and hope for the best outcomes for everyone dealing with this condition!!

Steve

[CatyD]

Hi- Sorry you are also going through this.   I had a bad ankle sprain/ligament tear....some PT thought it was all good until 2 yrs later when the ocd pain began.   I had MF surgery at the surgeon's recommendation and didn't know anything else.  In fact I never saw the MRI report so I don't have any details that many here do.

As for cutting back on the exercise, I'd avoid anything that compresses the joint....running/jumping activities.  otherwise do what you can to keep the muscles as strong as possible but won't cause you pain/swelling. 

Good luck at your followup with week.

[BadankleNJ]

Steve,

Sorry to hear about your OCD, but there is hope. I had a large OCD that I feel was successfully repaired with debridement / MF about 27 months ago. I am older and my Doctor suggested an ankle fusion but offered to try MF first. Regarding your specific items, my 2 cents:

1. I don't think it will deteriorate quickly, mine took years. If you can deal with the pain continue your activities. Investigate and research before you decide.

2. My Doc was an OS with a large ortho group. He does strictly ankles.

3. I lucked out, I have an HMO, my primary recommended him. I researched him on the internet and found a few good comments. I met with him and liked his approach.

6. I was 57 when I had it done. My Doc and statistics I found on the internet only gave me a 25% chance of MF working due to my age. It was a long recovery, but it worked (so far).

This is a link to a post I made with more details on my experiences.

http://osteochondraldefect.net/forum/index.php?topic=101.msg321#msg321

Bottom line is get it fixed, the older you get the harder it is to recover.
Good luck, feel free to message me for additional info.

[tewchihuahua]

Hi Steve - I had a arthroscopic micro drilling procedure done 14 years ago and am 1 month out from having had the DeNovo procedure and can offer a perspective on some of your questions.

1. In my experience, the deterioration occurs slowly. My 2nd surgeon said my lesion had not gotten any bigger, so I believe the pain getting worse may not mean the lesion or cyst are necessarily getting bigger.

3. I'd say the best way is to call the offices of some of the leading surgeons in this field and ask for recommendations for someone closer to your area (Dr. Richard Ferkel in CA or John Anderson in MI are two I know of).

5. I spoke to my 2nd surgeon at length about this. My lesion is on the medial talus. For my recent procedure, I had an incision but it did not require an osteotomy.  He didn't think osteotomies were usually necessary and he had some kind of tool to jack up the bone so he could see. He preferred this method as it provides better visibility and more comfort that he is taking care of all the problems. Although I have read that there is usually no problem with osteotomies healing.

Hope that helps.

[ColSteve]

Thanks much for the posts (CatyD, BadankleNJ tewchihuahua) – your information and encouragement is really helpful! 
Thanks also to Kwelty for the information on the Donovo Dr.

I now have 4 opinions from ankle surgeons with two more scheduled (fortunately all the docs are in network and my insurance says no limit on 2nd opinions).

I have gotten very divergent opinions, but ultimately some encouraging news.

#1 (DPM) – Original diagnosis -- recommend microfracture for talus, bone/cartilage graft for sub-cortical cycst in lateral malleolus (fibula).  Should not do much activity until surgery. 

#2 (DPM, Denovo specialist) – Talus lesion is small and simple, microfracture is old procedure, DeNovo much better.  My talus an easy fix arthroscopically.  Likely would do nothing for fibula, but “game time call”.  His notes mentioned the possibility of needing to do an open operation for the fibula.  He said OK do most activities.  He also offered to inject it with cortisone, said that is helpful diagnostically, because if all the pain goes away, you know it is entirely a cartilage issue (no tendon / ligament, etc. issues), but cortisone can inhibit healing of the cartilage graft, so would have wait a few weeks after cortisone before surgery.  I declined the cortisone at this time.

#3  (OS) – Thought there was a good chance it would heal on its own, recommended waiting several months before considering surgery.  I asked him about DeNovo and he said that would be replacing better cartilage of mine with worse cartilage.  OK to do light activities, said my actions (presumably within limits) would not determine whether it heals on its own.  Indicated that the partially torn ligament (AIFTL) / ankle overall was quite stable.   Even though I knew this was just another opinion, the psychologically uplifting effect of this opinion was huge.

#4  (DPM) – My case very grey area, with prominence of deep sub-cortical cyst in lateral malleolus rather unusual.  He noted that it seemed a bit walled off from the surface and wondered if it was pre-existing and aggravated by the sprain or the hard downhill run I did in Nov. and that it may be the source of much of my pain.  He said case could be made for and against surgical intervention.

The other very good news is the ankle has been getting better – less pain, walking almost completely normally now.  So, I am definitely not going to rush into surgery and even did a pain-free bike ride yesterday, though a bit more sore this morning. 

Things I think I have learned so far:

1)  Very encouraging to hear that injury will likely will not get worse rapidly -- time to fully research options.

2) My sample size is very small, but the DPMs seemed more eager to do surgery than the OS  (don’t want to draw too much of a conclusion here, may have nothing to do with Dr. type).  Also, it was a bit difficult to get questions answered to my satisfaction (admittedly I had a lot) and following-up with asst. is less than ideal.

3) I got some good recommendations for top Drs. in Denver area and I found these lists on the web for top Drs. nationally for 2012 and 2013 (seeing one of them tomorrow):

http://www.tcomn.com/Portals/10/Documents/OrthopedicsThisWeek052212.pdf

http://ryortho.com/2013/11/the-26-top-foot-ankle-surgeons-in-north-america-2013/

Thanks again all for the information and encouragement!

Steve

[ocdnetadmin]

From the various ankle doctors I've seen over the years, it seems that some are more inclined to operate and some are more conservative. My first doctor was more conservative with respect to surgery; she got a very impatient me to go without surgery for practically a year! Meanwhile I was wearing ankle braces, doing physical therapy, etc.

I think taking the conservative approach is good because you can see if your ankle holds up under normal use. If the pain isn't too bad and is something you can live with, it might make sense to put off surgery. Surgery is always going to hold more risk than doing nothing. (unless your ankle is collapsing by the day)

That said, I was determined to play basketball again and forgoing surgery would mean the end of that dream.

ColSteve, if you try the conservative route, try not to aggravate the ankle through intense physical activity. Ie. no running, jumping, skiiing, etc. Best to give these up if you can honestly.

I think the two options are:

1. Conservative + curtail physical activity in order to preserve the ankle for as long as possible
2. Surgery + attempt to return to physical activity

[ColSteve]

Alan,  Thanks for your advice  -- very helpful and good for me for getting the big picture.  Even though my ankle feeling better, I can't say I think I am
any closer to running -- the key activity I really want to do.   Almost tried DH skiing this weekend (kids eager and have 4 pack I hope not to waste), but thought better of it.

Guess I have some time -- will try the conservative treatment for a while (with no running, jumping, etc. -- I definitely agree with your assessment on that), while I research all the surgery options.  If it doesn't really heal to where I can run again, I will have to go the surgery route...  whether I would ever try to run again after surgery (and risk loss of walking / hiking in later years) is another question, but not for today...

BTW,  Your book idea is really good -- I would like to help it I can (though my schedule really busy).  The emotional aspects of giving up loved physical activities is a significant aspect of this whole ankle OCD thing, and the process of learning to "make peace" with reduced activity, etc....

Also, how are you doing?  I glanced through your old posts, but didn't find a recent update.
Actually, just found one that says that you are not running or jumping for past 5 years?
I am sorry to hear that and hope things are going well, otherwise.

Again, thanks for all you do to assist the OCD community!!
Steve

[ocdnetadmin]

Hey ColSteve, I understand the desire to get back to running. Best of luck on your journey. Whatever happens I hope you can learn to live with your life. That's the most important part.

Thanks for offering to help with the book. I thought I would have a lot more material actually but have run out of things to say, lol! Maybe it's time for others to offer their spiritual or emotional advice. I'm lacking inspiration for that chapter at the moment.

As for myself, I gave up on sports a year after my MF surgery. I realized the ankle wasn't better than before and might have been a bit worse after the surgery, and I was too scared and scarred to try another (more invasive) surgery such as OATS or denovo. So I finally moved past the hope / denial stage of grief into the acceptance stage. I don't do any running or jumping, no sports at all besides swimming and weightlifting.


Yea it's not the most inspiring story but I'm not the most emotionally courageous person. That's why I think emotional support is hugely important. I had no one to give me strength when I needed it and I couldn't summon it in myself. So I went several years of dark periods of fear and ignorance; I had shut myself off from learning more about the injury because I just couldn't deal with the reality. So writing the book was a learning experience for me, the first investment of effort I've put into learning about OCDs in several years.

I'm glad you are getting some benefit from this forum.

PS I may open the book up to other people so they can add their experiences. If you want to contribute please post in the OCD Book thread

[ColSteve]

Hi Alan,  Sorry for all the posts -- I was just looking through more of your old posts, seeing more of your story and your great advice. 

Yeah, seems like ankle OCDs and running definitely do not mix.  Despite my recent upbeat Dr. opinion, I have to accept that I my well have done my last running (amazing how one bad step can change your life) and that if I can do most of the other things I want to do, by not being foolish and trying to do the things I can't,  surgery may not necessarily be the best choice (at least any time soon).  Swimming is a great alternative sport and hopefully I will still be able to cycle. 

Your story is very inspirational  -- sharing your experiences to help others with this condition.  Sounds like you are in a good place at this point.  Hope you are able to walk / do normal activity without pain.  When it comes down to it, all our beloved sports pale in comparison to this basic capability.
 
In dealing with this, I am so glad to have all the "modern" internet resources (like this site) available to research conditions, treatments, Drs., etc. and to share experiences.  Just knowing what others have gone through (good and bad) helps one prepare mentally for the range of possibilities.  My first Dr. gave me no indication that it was a serious condition (and possibly not fully fixable).  My first "ankle OCD" google was very eye-opening...

Steve

[dave1234]

Steve:

I initially was diagnosed with an ankle OCD in 2008.  I took a year off from doing any running.  By spring 2009 I was able to run again, but in Spring 2012 my ankle started hurting again, I stopped running.  By spring 2013 it was painful to even walk, and decided I needed surgery.  I got surgery just last week (DeNovo) to repair the injury.  Even if my surgery is successful, I don't plan on ever running again.  I went a year hardly being able to walk, and don't want to experience that again   I'd like to "preserve" my ankle for other things like biking + climbing. 

There's no real downside in taking the conservative approach for a few months and see how it goes, maybe even in a walking boot (in case you haven't picked up on this theme already, it pays to have a lot of patience when dealing with an ankle OCD!). 

If still hurting after that, at least then you know you've given the conservative approach a shot, and the decision to get surgery is easier (that's the way it was for me).

Cheers,

Dave

[lguhsiesel]

Hi Dave,

How has your recovery been? I just had the surgery and wondering about your prognosis, whether the denovo was covered by insurance, and whether you're able to resume running again?  Thanks - Lucia

[ColSteve]

Hi All,

Apologies for not posting in a long time and the long post now.  I have had an interesting evolution, unfortunately perhaps moving closer to surgery now.

Old history is earlier in this thread…  lateral kissing lesion (talus and fibula) from bad ankle sprain on left ankle Aug. 2013.  Confirmed by MRI Dec. 2013.

I ended up getting 6 opinions in early 2014 -- 3 DPM and 3 OS, Denver Front Range area and a “top 25” Dr. in Vail. 

#1 -- DPM – recommended immediate microfracture

#2 – DPM -- (De Novo specialist) – recommended immediate DeNovo

#3 – OS  -- Do not do surgery -- give it several months to see if it heals

#4 – OS  -- Do not do surgery, good chance to heal, would use biocartilage if surgery needed  (recommended PT)

#5  -- DPM – close call on surgery – more concerned than others about fairly large subchondral cyst in fibula

#6  -- OS   -- Do not do surgery, cartilage looks largely intact on MRI, fibula cyst is minor deal as very little weight on it  (recommended PT).

⇒ So 3.5 to 2.5 against surgery,   3-0 against surgery from OS

Ankle improved through Feb / March and I decided to avoid surgery if at all possible.   No running  -- which was REALLY hard to do, but I was walking virtually pain free

April – DH skied early in month, no pain.  Late in the month, cheated and went for a couple of short, easy runs (smooth, soft surface, no downhill) – gloriously enjoyable.  No pain during run, but hints of soreness a few days after the 2nd one.

May – Good month, cycling, occasional twinge of pain, got a good feel for what my “happy ankle” range was.

June – Good month, did some strenuous hiking at Grand Canyon, Zion.  No pain during or afterward. 

July – Late in month, without thinking, stood on left tip-toe with full weight, immediate sharp pain, but no pain afterward.  But 4 days ago had slight pain on outside knob of ankle (fibula) after an easy 10 mi. bike ride.  Downward progression since then with more pain on that whole side of ankle (fibula and talus area) on walking and dull ache afterward. 

I am now trying to rest my ankle as much as possible, hoping to get one more reprieve, but fearing I may have crossed a threshold toward surgery (will have to do something if it gets to point where I am in significant pain walking).  Local Dr. appt. scheduled (and very belated PT appt.).  I am thinking about strategy for determining procedure choice (likely DeNovo graft, not microfracture) and best Dr. (want a top Dr. nationally, if I can make insurance and logistics work).   

Thanks for all the responses to my earlier post.
Lots of stories to read and catch up on… 
Hoping for the best for everyone with this debilitating condition!

Steve

[Suz]

Keep us posted, I had micro fracture in May and am still trying to get back to activity (started too quickly and ended up straining other ligaments in ankle). I am interested in what you learn about DeNova procedure and who the top docs are.

[ColSteve]

I have not been on the forum much lately (busy fall with work and kids), but wanted to post an update, as I am nearing the 1 year mark since my OCD diagnosis (17 mos. since the injury).

Suz – Sorry for the way slow response to your questions.  I assume that you found the article referenced by Dave1234.  Based on the limited research that I have done, I think that the listed authors are some of the top DeNovo docs.

Article (abstract only):    http://fai.sagepub.com/content/34/9/1205   -- anyone find a free copy of the complete article?

The Dave1234 Dec. 18 2014 post is in this thread:    http://osteochondraldefect.net/forum/index.php?topic=188.msg901#msg901

Suz, I was just reading a bit more of your posts -- sorry to hear about your missed marathon.  I hope you ankle is feeling better.  Your Aug. 2014 PT comments are pretty interesting  -- I can't imagine not getting PT prescribed after surgery -- but only 2 of the 6 docs I saw prescribed it as a first course of action and it took me 8 mos. to actually get around to it (details below). 



Update on my condition:

-- I am continuing conservative treatment for small ( 3 x 8 ) lateral talar dome lesion and subchondral cyst.   It has been a pretty good fall with just some minor ups and downs.
 
-- I have been seeing a well regarded Physical Therapist (specializes in sports injuries) twice a week since late Aug. (~ 4 mos.).  Treatment sessions consist of ultrasound followed by ankle massage / manipulation, with a PT stated goal of breaking up scar tissue and restoring proper biomechanics to promote eventual healing of the OCD.

-- My PT prescribed home exercises are pretty standard for ankle injuries (theraband stretches, toe raises, propriosceptive exercises -- standing on one foot with eyes open then shut). 

-- The strength and mobility of my ankle has definitely improved since starting the PT and at times my ankle has felt really good -- to the point where I even snuck in an occasional slow UPHILL run.  I have a great 2.5  mile steady uphill trail behind work that I have run up, then walked back down.  Each time I have done it, it has been fabulous (and pain free during the run and only slight irritation the next day).  At one point last summer, I said I would completely forego running, if that would help me avoid surgery -- but the running addiction is very strong  :-)

-- I am able to walk normally without thinking much about my ankle, but I am still getting occasional minor twinges of pain and other sensations in the ankle -- typically a bit worse for a day or two after a big activity (including some of the PT exercises, which I have had to curtail a bit).  Fortunately, the irritations are still getting better with a couple of days of rest.

-- I will continue with the PT for now, as I am not ready to consider surgery yet and the PT may still be helping (and I have a low insurance co-pay for PT) -- though I can't say that any significant improvement has occurred to what I think is the core OCD pain.  Also, I need to keep monitoring to make sure the treatments / exercises aren’t aggravating the OCD injury (even though they may be strengthening the soft tissue of the ankle). 

-- Overall, I still think that my conservative treatment is likely just buying time.  At this point, that still seems like a good bargain, but I wonder if I might be making the surgery harder by putting it off and also wonder when might be a good time to get another MRI.

Thanks everyone for all the great posts and hope your recoveries are going well!



 

[ColSteve]

It has been a long time since I posted -- thought I would give an update.  It has now been 27 months since the ankle sprain that caused my OCD (kissing lesions on lateral side of left ankle – 3 x 8 mm OCD on the talus) and I am holding with conservative treatment  (still going to PT once per week -- but not wearing a boot or brace).

Overall, my ankle is still holding up pretty well, with twinges of pain occurring on certain movements that come and go. My ankle was actually feeling good enough that I did a sprint triathlon in late Aug. (pain-free!).  It was fabulous to be out doing a tri again!!  Since the triathlon, I have had one period of increased pain, apparently tied to the clutching motion of driving a manual transmission car (which also irritated my ankle in first months after the injury), but now it is feeling pretty good again.  Overall, I am running just a bit these days -- an easy couple of miles a few times a month.  The conservative part of me (that wants to avoid surgery for a long time) says I shouldn't even do that, but when my ankle isn't hurting, it is hard to resist running just a little.

Last Feb. (2014), during a period of increased ankle pain, I did go back and re-visit one of the local OS Drs. I saw in Jan. 2013.  I did not have a new MRI for this visit.  He basically just re-iterated what he had said before – that while I had cysts in both my talus and lateral malleolus, the cartilage appeared to be intact.  He added that while it wasn’t going to really get better, it shouldn’t get worse either and was just a matter of pain management.  He also indicated again that if he did surgery, he would do retrograde and said he wouldn’t touch the “good” cartilage.

So I guess I am a data point for giving conservative treatment a shot.  I think my OCD being fairly minimal is a factor in not needing surgery so far.  I still plan to get another MRI at some point to see how things have changed and get an opinion from one of the national experts.

Thanks again to everyone for posting and again a big thanks to Alan for starting this forum.  When most people don’t even understand what this condition is, it has been really great having a community of people who understand this injury and everything it entails.  Good luck to everyone!!