Tuesday, August 28, 2012

Snowboarder vs. Ankle Distraction Arthroplasty

I forgot I had a blog.  My bad.

After one year, ankle distraction arthroplasty has helped reduce my pain.  I no longer hear and feel bone-on-bone grinding.  My average daily pain was reduced from a 5 or 6 out of 10 to about a 2 or 3.  But more on my pain later.

I visited Dr. Jeng at Mercy last Tuesday to discuss the progress we've made over the past year.

Here is a comparison of last week and a visit in April 2012.  It's a little difficult to see an improvement in joint space.

The anterior comparison is clearer.  Dr. Jeng indicated he saw a slight improvement in joint space medially.  I'm wondering if that dark spot under the arrow is an osteochondral cyst or a space left in the bone from the pelvic bone allograph transplant.  

Here is a comparison of last week's x-ray with one from before the distraction arthroplasty in June 2011.

Same deal -- anterior view.  This comparison is pretty good.  You can see the talus is no longer touching the tibia on the medial side.

What about ankle flexibility?

This was taken right after the external fixator was removed last November. 


This was taken tonight.  The plantar motion is epic, but the dorsiflexion is probably only a degree or two above 90.  Spunky digs it.

Now what about pain?  It all depends on my activity level.  To help keep track of it, I've been trying different pedometers.

The Tanita FitScan pedometer saves steps from the previous 14 days.  I've recorded every day's step count since May 2012 (with exception to a week earlier this month) to help measure my progress since the surgery.

You can see a local pattern in the chart above -- each day's spike is usually followed by a low count.  The more steps I take and time I spend upright, the more I pay for it the next day with increased arthritic pain.  Fortunately, the pain subsides with rest.  Overall, though, the step count each day rarely reaches more than 5,000.  Some low step counts are a direct result of too much pain while other low counts are due only to the anticipation of pain.

Here are my average step counts over the last four months.  May's count was 4,537, which is very close to two miles given my height and stride length.  

My pain management plan has changed since I last updated the blog.  Earlier this year, I used Celebrex to manage pain.  But I've recently switched to Tramadol (Ultram).

Ultram is great for days when rest is not an option.  I tend to go through periods of Ultram use lasting several days with longer periods without it.  I suspect it's because I'm able to push my activity level higher while taking it which results in increased pain the next day.

Where are we after one year?  If I was happy with my current activity level, I'd say we've made huge progress on my ankle.  Unfortunately I have a few problems with where we're at today:
  1. I want to be able to stand for longer than 60 minutes straight without needing significant rest the next day.
  2. I want multiple days of activity without pain (no rest days).  Airport travel kills the first day of vacation.
  3. I need more ways to get my heart rate high enough during cardiovascular exercise.  Swimming is great, but it's usually inconvenient.  

It's still unclear whether I can snowboard in my current condition.  I imagine I could only do one run down the mountain before riding my toe edge resulted in too much weight on the anterior part of the joint.  

What's our game plan going forward?  Dr. Jeng and I will continue to monitor the ankle for any signs of clinical improvement over the next 12 months.  Recall that patients that undergo ankle distraction arthroplasty can show clinical improvements for several years after the procedure.  

If after 12 months we see no clinical improvement or we see an increase in average pain, we've both agreed a below-the-knee (BTK) amputation is our best option for me to return to a more active lifestyle.  This CT scan indicates ankle replacement is not an option -- the bone stock is terrible.  An ankle fusion will most likely have the same three issues identified above with the increased risks of adjacent joint arthritis and more surgeries.

I'd think I'd be very excited to have an amputation, though I need to continue speaking with amputees.  It probably sounds crazy, but imagine doing nothing all day not because you're in pain, but because you feel great and you don't want to ruin it.

11 comments:

  1. Thanks for updating on your progress! My ankle distraction arthroplasty is this Tuesday with Myerson. It's incredibly encouraging to hear of your progress and I'm hoping to experience much of the same. All the best to you from a fellow ankle breaker!

    Margaret

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  2. Tony,

    Great to hear from you. I finally had my cage put on Feb. 15th, and removed last May 30th. Left that day with 6 mm of distraction, but when my Dr. check me up again last July it had decresed to 3 mm, I assume because of use, PT, and weight bearing. Apparently, lower functional limit is 2 - 2.5 mm, so I will know next month during the 2nd follow up if there is still hope. No doubt, the ankle distraction helped a lot, these day I can walk a few steps (pick the mail up, to the car and back, etc.), while before I could not even stand up by myself. Still, the result so far has been sub-optimal since I still rely on the cane or crutches and have not had a single "normal" routine day yet On the positive side I have seen continuous progress in a month-by-month basis, but there is still a chance that the ankle could collapse before the year since the surgery. There are no many options if this happens although a few weeks back I found this and wanted to share it with you and your blog:

    http://biomedicaloptics.spiedigitallibrary.org/article.aspx?articleid=1166983

    We will see. For the time being we keep fighting with PT sessions, drinking epwater, water, water, a lot of streatching at home, and a good humor.

    Friend,

    Carlos


    http://biomedicaloptics.spiedigitallibrary.org/article.aspx?articleid=1166983

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  3. This comment has been removed by the author.

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  4. Carlos,

    Be patient with it. I'd say I'm not yet happy with my results either, but I was even more irritated in June. My pain was much higher then (note the low average step count). I occasionally still have to use a cane (I used one this morning as a result of too much activity yesterday).

    Do you have any images of your X-Rays that you can share? I was curious to see how messed up it is given there's a risk of it collapsing. I'm assuming that if it's that bad fusion and replacement are poor options? What about amputation?

    Thanks for sharing the link. When I get some time I'll read up on that.

    I stopped going to PT after only a few weeks. They usually want to work on dorsiflexion. I didn't want to do that. I was worried about wearing down the joint in that area, so I only focused on loosening the foot and toes for a few sessions and then stopped going.

    It's hard to have good humor about something like this after dealing with it for so long. Are you taking anything for pain?

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  5. Hey Tony,

    Thanks for your quick reply. I do not have images of my ankle after the distraction, but I do have a CD showing the hardware taken after the accident. I broke the tibia higher than you in two pieces, and the medial malleoli. The real damage was done by an infection that set in exactly 1 month after the accident, when things were looking bright. It left my distal part of the tibia looking literally like a sponge. Since there, things went downhill until February when I had the ankle distraction. Fortunately when they open the ankle up and check for the infection it was completely cleared; samples and 1-week blood control was also negative. So far I am not taking anything for pain, the edema and the erythema are improving greatly, and pain is there but I believe is subsiding slightly each month. Besides, I would have a year after removal next spring, so there may be a chance for thing to improve more. Regarding PT, I would encourage you to talk with Dr. Jeng and get his inside, but at least for me it seems to help with pain from the soft tissue, and particularly when I rest long enough between the sessions.

    My Dr. said that if distraction does not work he could perform a great fusion; it seems replacement is not a good option in active patients with history of infections. The problem I see is basically the cost of it in effort and time vs. the result. Since he cannot use screws due to the risk of re-infection, he would use another external frame for at least 6 months. During that time they might also need to extend the leg to compensate for the loss of bone required by the fusion (about 1/2 inch), but this part would be included in the 6-month frame. After that recovery time is about 12 to 18 months.

    I have seen what new bionic prosthetics do, and I would be able to have a more active working and social life it I go by the BTK amputation. I also read most BTK patients are able to walk and be functional again 3 months after the surgery, but my doctor told me he is hesitant to remove any healthy tissue, and that it was still too early to talk about it. My wife is not convinced either because insurance issues with the prosthetics, driving issues, taking leeks at night (which at my age look like will become more frequent), etc.

    I will send you a link to few images of my x-rays when I get a chance. BTW, a good friend gave me Texans jersey recently but it is too big (XL) and as a good Latin guy I care more for soccer. Would you be interested on free?

    There you have some light humor . . .

    Carlos

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  6. Hello, I was very interested to read about your ankle surgery. My 25 year old husband had a car accident when he was 16 that crushed his ankle. He was told to take as few steps as possible and that his ankle would likely be fused when he is 40. He lives in constant pain and inflammation in the ankle joint. About 3 years ago, he thought of getting it amputated, but everyone acted like he was crazy. I'm am glad to hear that you found a doctor that understands your desire to be able to be active while you are young. I was so excited when I heard about ankle replacement, until I realized you can't get it until you're 40 --- that's too far from now! Today is the first time I have ever heard of distraction arthroplasty. I am going to be looking into it more. My husband is so beat down by his pain that he doesn't believe that he will ever get better. I am still praying for a miracle. Thanks again for sharing your story!

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  7. Hi Tony,
    is there a way I can contact you directly via email? There are a few important pieces of info I'd like to share with you as future options. I'm a fellow ankle-breaker, and I think I can help you.
    How can I send you my email address without revealing it in this public blog? Any way to exchange addresses?

    Eager to help,
    Sylvia

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  8. Sylvia,

    Cool! You can direct message me on Twitter (@beartrapankle).

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    1. Hi Tony,
      I set up a twitter account right away and tried, but direct messaging says "Direct messages are 140 characters, private, and can be sent to any user who follows you on Twitter." meaning that I can't send one to you unless you follow me. I tried to post tweets directly to you, but it seems you never got those? If not, please find me @Ekavati12 .

      Sylvie

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  9. Hi – will you please post your Blog at Snowboarding Community ay vorts.com? Our members will love it.
    They include: Snowboarders, Snowboarding Fans, Experts, etc.
    It's simple just cut and paste the link and it automatically links back to your website… You can also add Articles, News, Photos, Videos and More! Free and easy…
    Email me if you need any help or would like me to do it for you.
    The Snowboarding Community: http://www.vorts.com/snowboarding/
    Thanks,
    James Kaufman, Editor

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  10. Tony,
    This twitter thing is taking much too long, so I will send you one of my suggestions right here, this one can be useful for others, too.

    I found that there is another ankle prosthesis option out there on the market than the one you mentioned in one of your articles (you wrote about S.T.A.R.). This other one could fit you much better because it requires less of the tibia bone, and it lies much higher.

    It is called INBONE Total Ankle System developed by Wright Medical Technology. A short article on it:
    http://footandanklefixation.com/ankle-joint-implant-tar/inbone-total-ankle-replacement-current-status/

    And a Californian clinic using it:
    http://www.chicofootandankle.com/services.html (To see the picture, click on Learn more about Total Ankle Replacement)

    Other Californian orthopaedic surgeons use this also, but perhaps you will find a few others, too, if you search the internet.

    For some other ideas I'm still waiting to be able to send you a direct message on twitter (requires you to follow me, as I wrote in the comment above). I'm not a marketing person, and not even living in the US, just a fellow snowboarder who wants to help. :)

    Best,
    Sylvie



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