Newly diagnosed with ankle OCD

[erica1112]

Hey Everyone - New to the group here.  43 - F - in NJ.  I started running about two years ago - never been much of an athelete so I was looking for a challenge.  This was a formal 5K training program with very experienced and professional running coaches - so I was in good hands.  As I'm VERY flat footed (like a duck!), they  encouraged me to buy a good sneakers at a specialty running store and see a podiatrist about orthotics.  Purchased both.  I explained to the doctor that I had a strange grinding sensation in my left ankle.  He told me ankle was merely unstable due to the flat-feet.  Ok - I can live with that. 

Let me back track and say that I was born with very soft Achilles tendons in both legs.  I wore leg braces for about 10-12 years to straighten the feet and strengthen the tendons.  I also suffered a very bad sprain while in high school.  This probably was the beginning of the injury. 

So, I started this running program - but on occassion my ankle would lock.  I thought I was crazy.  Finally after two years of this, I went to an OS.  He noticed some bone spurs on x-ray, but since the problem wasn't new - he sent me for an MRI.   I was then referred to the head of orthopedic trauma at Lennox Hill Hospital in NYC (trauma?  What trauma?).   This OS was working one day a week in NJ.  That's when he showed me the MRI, and multiple other problems (including a ruptured ligament).  He asked that I go to Lennox Hill for a SPECT CT.   This is new technology and is a multi-dimensional, colored view of the joint.  Lennox Hill is the only place in the NE that does this test.  Trust me - I checked.  However, as they scanned both legs - it turns out I have the condition in BOTH ankles. 

Well, much to my disappointment - my "trauma" OS has decided he no longer takes insurance - so I had to find someone else.   New OS seems to be on the money with this - and as the lesion is quite large, I'm doing the surgery come August.   I'm looking forward to this to finally have some relief to this ridiculous problem.   I have two friends with breast cancer - so I really think this is just ridiculous.  Ironically, my ankle locks more as I clean the house (is there any way to get out of vacuuming?). 

I must say that since losing 10 pounds - this has GREATLY eased the problem. 

OK - so thanks for reading.   Surgery is easy - recovery - not so much.  But - if anyone can lend any insight to the recovery, I would be grateful.  I'm concerned about getting around the house, taking showers, fun stuff we take for granted.   My doc. tell me that while I'll be on crutches for about 6-8 weeks, I should be back to work in two weeks.  He has suggested an open procedure to better access the injury.  While arthroscopy is always possible - it doesn't give the best visual of the injury.  This makes sense considering the tight anatomy of the joint.

Your comments would be most appreciated.   

[airjaw]

hi erica, welcome to the community! (as you can see its quite small but we're growing... slowly.

I'm sorry to hear about your OCD's.. but we're all in this together eh?

I want to touch on something you said briefly: "surgery is easy - recover - not so much"
While the actual surgery is out of your hands, and in a way I guess because you have no role in it it can be considered "easy", I urge you to be careful about viewing surgery this way because surgery isn't guaranteed to fix anything.

What surgery are you planning on getting in August? There are several treatment options right now.. microfracture/drilling, OATS/mosaicplasty, and a relatively new one, ACI/MACI.

I'm not too high on Microfracture because I had that surgery and it didn't work. Rather it made my ankle even worse (and i'm young too.. 24).
OATS is a very invasive surgery, and I'm not even sure how your doctor would do it on both ankles as he has to take cartilage from your knee too.
Usually what I see is the doctor takes cartilage from the opposite knee and puts it into the other ankle, but you have two ankles so I'm not sure how that is going to work.


So, i'd be very careful about getting surgery... ask as many questions as you can and report back here.. a few of us should be able to give you a patient's perspective.

As for recovery... its a lot easier if you have someone to help you out.. either a friend, coworker, or family member. I managed pretty well with a car.. public transit is out of the question. I had my roommate pick up groceries for me as well as drive me back from the hospital day of.  Showers are tough.. your only real option is a bath. Just be very careful getting in and out of the water.

Try to remain positive and optimistic. Surround yourself with friends and family who will support you. I had to go through recovery mostly by myself, alone, which was really hard and not a good experience at all.

[docs73]

hi erica.

just has a lateral talar ocd drilled 2/52 ago and am doing pretty well.

i had peroneal tendon surgery 6 /12 ago (same injury - snowboard stopped, legs didnt...) and i was non-weight bearing in a cast for 2 /52 then weight-bearing for 5 weeks.

this time round my recovery was much quicker - i thought i would hurt more as my ankle wasn't splinted and i was walking immediately but actually the pain was maybe a tenth of the first op.

anyway -tips for 2 months in a cast.
go online and buy a limb protector - in the uk = limbo (google it) = reinforced plastic bag with neoprene cuff. allows you to bath/shower without worrying about it getting wet.

buy a bath seat. much easier than showering

get a rucksack - your hands will be full of crutches.

when your cast itches - blow cold air down with a hairdrier - much better than chopsticks and less skin trauma!!

good luck!
sonia

[erica1112]

Hey Airjaw - Thanks for your response.  I have decided to go w/a modified OATS.  As my lesion is quite large, this makes the best sense for me.  I will also a ruptured ligament re-secured.  The surgeon did preface all this with the possibility of a full ankle replacement in the future.    Hopefully I can get another 100,000 miles out of this.  But anyway - he'll be using a lab created matrix for the reconstruction of the cartilage.   Using cartilage from either knee is not an option since I have the condition in my right leg.  Oh - BTW - not having both ankles done simultaneously.   Can you imagine....??  I'd have to crawl around the house with my cats.   

I'm feeling good about this as the more I exercise, even a power walk or whatever - the more of a problem it becomes.  On Sunday I went for a good walk - and once I started running, the ankle locked.  So frustrating!!!!

I'm going to look into a temporry handicapped placard... have to see the local police about that.   

Thanks for your advice - I do appreciate!   

More to follow.  e

[rodjeanne]

I had surgury in Oct of '06, then again in June of 2008.  I just was back again today for the same pain in the same ankle.  MRI is Monday to see the extent of it AGAIN.  Recovery is difficult, I had a cast for 6 weeks on crutches, the a walking boot for 3 more weeks. Therapy is very painful! But, now possibly facing a 3rd surgery.  It is very painful, so it is hard to not have the 3rd surgery.  But, after surgery, they relief seems to only last about 1 year..... not wanting the results of Monday's MRI~~

[carrie1225]

Hi Everyone!

I am almost 3 yrs post op from Mosaicplasty surgery - in a nut shell its OATs using donor(Cadaver) parts.  It was my best option to walk again...
Its a rough surgery and long recovery but today I walk, I can run, if I had to but probabaly not far...    Overall its a functioning ankle that moves with a smoothness that I can never recall in all my years.  I lost some movement from surgery but I never had full range of motion to begin with, I walk without a limp or any motion that distinguishes that I had this surgery. My ankle still reacts to weather, long walks or standing for too long but its nothing like what it used to do and for that I am thankful.

If you have questions feel free to ask..... I know that OCD is not a common injury in ankles and sometimes its hard to talk to someone about it because people without this injury can not even begin to understand the dilibating effects of this injury, so boards like this one are a great place to get advice, hear experience and to vent... So seriously if you have questions just ask.

Have a great day and smile!

[bumankle]

I am 3 months post OATS and just beginning to walk w/out the boot. What movement did you loose after surgery exactly? Just full range of motion? And how long is a long walk for you? Im curious as to what i need to realistically expect.....

[carrie1225]

Hi Bumankle
Congrats to be walking at 3 months post op.  I spent 7 weeks in fiberglass, 12 weeks in Herman Munster Book and 4 - 5 months in a brace. I took my first clumsy step at 11 1/2 weeks and then I developed Planters Fascitites which I continue to deal with today.

12 yrs prior to this last surgery I had my talus "reshaped" as my ankle used to lock up something terrible, it did not solve the problem but it lessened the occurance and that is what decreased my ROM originally.  After this surgery at PT around 9 weeks post op they scored my ankle.. I scored a 4 out of 80... Rather disappointed.... My Surgeon expected me to get to 70 at a min... 72 at a max.. I maxed at 63  five and a half months post op.

The things at PT they used to have me do were sit in a chair feet flat on the floor and slide them under the chair.. the right foot goes under the chair rather far and remains flat the left foot not far at all.  Another thing was keeping feet flat on the floor and bend down (not over) as if getting a pot from a bottom cabinet, my left foot will not remain flat.. the heel will raise up. It used to do that prior but not as severe.... If I am standing and just lift the front of the foot, I can lift it about 1" on the left and 3" - 4" on the right, I can raise equally on both feet onto my toes and it appears to be equal in left to right motion.  PT told me that I have 33% less motion in the left foot over the right foot.

As far as walking goes... I dont' have a straight answer to give you.  It depends on the surface I walk on... The park near me the longest trail is 3 miles of crushed fine hard compacted gravel... I typically feel it about 2 - 2 1/2 miles in... starts out a dull ache and then stabbing pain and then harsh pain.. In additon to the PF, my arch is collapsed in the left foot, has been that way my entire life.. So I am really not sure if that is contributing to this or not. Rocks, pebbles, sand, grass are definate aggrivators to the ankle, anything that requires more "stability" in the ankle will make it cranky. 

Overall I am pleased with the outcome of my surgery. My surgeon told me the first time we approached this surgery that it was not perfect and it was to buy me time and I understood that going in... I have no idea how long this will work but I am thankful every day that I walk and considering I didnt' walk months prior to the surgery and months after surgery, it feels good to be able to walk again. 

I wish you continued success and it looks like your on your way.. further advanced than I was that was for sure. Keep your spirits up and remmeber to smile.

All my best
Carrie

[bumankle]

Thanks for sharing your experience. I know just what you're saying about the sliding the foot back under the chair...ive been working on it! my left def doesn't go as far as my right. what's worse though is the opposite...when you slide your feet foward away from chair in front. the left foot will not rest on the ground at all..so lack of plantar flexion...my PT said i will lose a lot of that motion bc of the screws..?? I just hope it will get better as my walking gets more advanced...right now im taking slow baby steps around my house! But i can already tell that i am walking better now than right after my 2 surgery (oats would be my 3rd surgery on left ankle). Thats exciting you can raise up on your toes! i can't do that yet...and in fact could never do that after my second surgery a year and a half ago! one of my goals is to get to the point where i can do a heel raise! thanks for the well wishes. all the best to you as well!

[erica1112]

Hi Everyone....  I'm now two post months post-op and had my second surgery this passed Friday.  The 2nd procedure was unexpected.  After the first surgery, my casted fleg fell into an equinus position (eg: a horse's foot).  So the foot was pointed for two weeks and the Achilles tendon shortened.  I didn't know this was a problem until a follow up with the surgeon and he said, "why is your foot like that?".  Physical therapy did not fix the range of motion, so we tried 5 lidocaine injections directly into the ankle.  My surgeon is a big guy and was unable to move the foot.  Then, my physical therapist grew concerned about a condition called Reflex Sympathetic Dystrophy.  RSD is a neurological complication after surgery, but sometimes there is no known cause.  Left untreated, this is a devastating problem that could render the joint useless.  It also has a very high suicide rate.  I underwent a lumbar/spinal injection (ganglion block), to see if that was the issue.  Even though all symptoms for RSD did not present (blinding pain being the fore-front symptom), the injection would NOT hurt me if RSD was negative.   If anyone ever suspects RSD for you.... get it evaluated immediately.

Friday's surgery was to remove some of the hardward used to stabilize my ankle (not the screws to fix the defect).  As well, my Achilles was cut to allow it to lengthen.   I am once again a prisoner to the fiberglass beast.   It seems like my recovery is on track to what I have read on this website.   My surgeon indicated that an ankle fusion may be in my future.  Ironically, fusion sound better than a joint replacement.  Replacements are really reserved for those persons in the senior years.  My beloved stiletto heels may have limited life, but at this point, I just want to walk and not be so dependent (helpless).

My surgeon did make the comment that my attitude would have a huge impact in my recovery... so everyone remember to keep the glass half full.  There is a hige connection between the mind and the body.   Read "Love, Medicine, and Miracles" by Dr. Bernie Siegel if you don't believe me.  Of course, Dr. Bernie's patients were dealing with cancer and such.  But really, what's the difference?  If your quality of life has diminished, then the illness doesn't matter. 

Thanks for reading.  I wish everyone always increasing health, love, and happiness from New Jersey.  es   

[erica1112]

Wow - totally forgot to mention.  My lesion was 18mm.  I understand from my surgeon that this one may be for the medical journals.  The surgical residents kept saying "Holy Sh%t", over and over.  The surgeon said if I would have ignored the problem much longer, my leg (tibia/fibia) would eventually collapse into my talus.  The talus was that fragile.  After all this, being in an issue of some medical rag might be good for a laugh!  es

[airjaw]

WOw! 18mm..
hope they got a pic of that..

kidding

[Paul Ankle]

has anyone heard of grafting a cadaver bone with a paste of adult stem cells?

[FrankJScott]

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