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Old 05-14-2013, 08:52 AM   #1
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54yo runner with OCD/talus considering DeNovo

Hi all. After developing an OCD lesion on my right talus in 2002 (from toe raises in the gym, I think), I had MF surgery in late 2004. I could run after that, sort of, but by summer of 2006 it was hurting again. I let another surgeon operate again in late 2006, and that accomplished nothing. I swore I'd not have another operation on it, but find myself considering DeNovoNT, at my own considerable expense for the material. I'd love to be able to run again without having to down Ibuprofen beforehand, and knowing that my ankle will be sore for days afterwards. I've gotten really tentative on stairs, limp some every day, and think that maybe I have 30 good years left if I can stay active, but a good bit less than that if I don't get my ankle fixed to enable that activity. Anyway, I have some questions:

1) Are any of you DeNovo patients my age? Are you a runner, and can you run after recovering from DeNovo?

2) Did you have a cast after surgery? I *hate* casts, and nearly chewed one off after my second surgery.

3) Can any of you explain why the pain will be so bad that I can hardly walk and then, within just a few steps, nearly disappear for awhile? X-ray and MRI don't show anything "loose".

4) Have any of you successfully had your insurance cover DeNovo recently? My OS said the hospitals used to eat the cost, but don't do so any more, and that my insurance (UH) won't pay. The material alone looks to be over $4K, but that seems like a bargain for the insurance company compared to the cost of an inactive life as I age.

I'm sure I'll have other questions, and will update this thread as, and if, I decide to move forward. In the interim, your input is gold above ground to me, and I appreciate it.

 
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Old 06-11-2013, 09:05 PM   #2
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Re: 54yo runner with OCD/talus considering DeNovo

It looks like I'm going to do this in July, just a week before my 55th birthday. I had a Q&A session with my surgeon today that was very helpful:

Rejection - Apparently this doesn't happen, and there's no need to take anti-rejection drugs.

Chances of being worse off - He's done a few of these, and all the patients are doing well. That and the good experiences I've read about here are inspiring.

Chances of running again - No guarantees, but he thinks it's a reasonable expectation. No running at all for 4 months after surgery, though.

The only downside is cost: The material is $4800 for my lesion, and insurance won't pay for it, and surgery center won't subsidize it.For those of you who've had this done recently, were you able to get insurance to pay for it?

Last edited by ScaldedDogCO; 07-05-2013 at 10:02 PM.

 
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Old 06-12-2013, 09:13 AM   #3
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Re: 54yo runner with OCD/talus considering DeNovo

Your story is one perfect example as to why some aspects of the Canadian healthcare system are superior to the US.

If I had to pay for my surgery that I am having this coming Mon I'd be going out of pocket over $10,000 or spend the rest of my life with ankle pain and it giving out. Only cost to me was the leg elevator and crytherapy unit surgeon asked me to buy...but even at that we submit the receipts to our group insurance through work and they cover the cost 100%

I think it's terrible that your insurance won't pay for your surgery.

Good luck
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Old 07-05-2013, 06:54 PM   #4
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Re: 54yo runner with OCD/talus considering DeNovo

I'm a few days away from my DeNovoNT surgery. While I'm not looking forward to it - I'm a little intimidated, to tell the truth - I am looking forward to the possibility of not having to limp home like I did tonight.

One big thing tempering my enthusiasm: After 10+ years and two surgeries on a painful right ankle, I think I've developed a lesion on the talus of my left ankle. The symptom is the same as I remember from 2002: After pain-free activity, I'm getting intermittent somebody-drove-a-nail-in-it pains that dance all over the ankle, but are centered at the top of the talus. I am bummed. It's one thing to go into this surgery thinking it might be The Answer, but it's quite another to realize that I may very well have to go through it twice, and have success both times, in order to live like I want to. Even so, I can only worry, pray and act on one ankle at a time, so I need to get the right ankle fixed before trying to diagnose the other one.

Last edited by ScaldedDogCO; 07-05-2013 at 10:03 PM.

 
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Old 07-12-2013, 04:32 PM   #5
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Re: 54yo runner with OCD/talus considering DeNovo

I had DeNovo surgery on my right ankle yesterday. The doc told my wife it went well, but he was surprised at the amount of scar tissue I had, presumably from previous surgeries. He had to do a bone graft below the implant, but just extended the incision up a bit, and took the bone from my tibia. Yesterday went well, and I only needed 1.5 Percosets for the pain, plus I took one before bed to help me sleep. I sleep on my stomach and side, and could do so by just hanging my right foot of the edge of the bed.

Today went well, but I made the mistake of trying to work at my desk, with my foot on the floor for an hour. Bad idea. I really need to keep this thing elevated to keep it from hurting.

Hoping and praying for the best...

Mark

Last edited by ScaldedDogCO; 07-18-2013 at 07:32 PM.

 
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Old 07-18-2013, 07:37 PM   #6
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Re: 54yo runner with OCD/talus considering DeNovo

I'm one week post op, and had my first follow up two days ago. I had a pretty crummy few days after my last post, as I don't do too well in those circumstances. My normal lifestyle is a little shark-like, in that I'm always moving, and I'm a little claustrophobic. Having the splint on drove me nuts over the weekend.

Anyway, I got great news! The splint is gone, and the doc wants me moving my foot and ankle as much as possible! Also, I have some incision pain on movement, but no ankle pain! That's really cool. I was worried that my other ankle would cause problems in a NWB situation, but, Thankfully, it's been fine.

Mark

Last edited by ScaldedDogCO; 07-18-2013 at 07:41 PM.

 
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Old 07-18-2013, 09:00 PM   #7
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Re: 54yo runner with OCD/talus considering DeNovo

Wow, I am glad that you got such good news at your follow-up and that things are going well for you. I know that others here have asked about the same procedure you had, so it is good that you are keeping us updated on your progress. Take care and keep posting!
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Old 07-28-2013, 11:47 AM   #8
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Re: 54yo runner with OCD/talus considering DeNovo

I had my second follow-up appointment Friday. X-rays showed a little "discoloration" (my term, not the doc's) in the talus still, but I think it looked much better than before. We'll do another X-ray in my next follow-up in 4 weeks. I start PT this week.

Question: Is it normal to have pain on the front of the ankle and limited range of motion with dorsiflexion? The doc is after me to move it as much as I can to limit shortening of the Achilles tendon, but the Achilles doesn't seem to be what is limiting movement. I'm anticipating fairly aggressive PT, and don't want to foul anything up.

Oh, since my last post, the "54yo runner" in the thread title has become a "55yo runner". I mention it to encourage those 50-somethings who might consider this procedure, assuming it turns out well for me.

Mark

 
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Old 07-30-2013, 08:59 AM   #9
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Re: 54yo runner with OCD/talus considering DeNovo

Mark,

Interesting the different approaches these docs have to dealing with this procedure. My doctor still wants me to limit my range of motion exercises and really just keep it in the boot. That being said, i'm weight bearing at two weeks! Anyway, hope all is going well and that we can put this behind us soon. Happy birthday.

-Steve

 
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Old 08-21-2013, 07:37 PM   #10
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Re: 54yo runner with OCD/talus considering DeNovo

My 6 weeks of NWB ends in the morning. I've learned a few things: Hope crutches rock, and you better have a family who loves you...

My ankle feels really good. I've hit my PT homework pretty hard, and started using a recumbent exercise bike at the gym 2-3 weeks ago. That's when the swelling - never bad - really started going down. Next follow-up with the doc is Friday, and I'm hoping to have walked unassisted some before then.

Mark

 
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Old 08-27-2013, 05:12 PM   #11
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Re: 54yo runner with OCD/talus considering DeNovo

Wil someone with experience tell me how the post-NWD phase is supposed to work? I think I overdid it. I walked, slowly, over the weekend, and wore my new Rockport dress shoes yesterday. By the end of the day my ankle was swollen and hurt. I was supposed to be in Lousiana for work today, but had to cancel the trip a few hours before departure.

How long do I need to wean myself back to unassisted walking?

Mark

 
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Old 10-21-2013, 09:20 AM   #12
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Re: 54yo runner with OCD/talus considering DeNovo

I'm now 14 weeks post op, plus a few days, and thought I'd post an update.

Wow!

This DeNovo procedure is amazing! My ankle has hurt off and on for 11 years, and I now have no pain. I'm back to walking uphill on the treadmill, which I'd taken to in lieu of running, and have ridden my mountain bike several times with no pain. I'm even wearing a pair of hiking shoes that have sat unused for years, as they'd make my ankle really sore.

The bad news:

My insurance company denied my appeal, so this was a pretty expensive surgery. Still a bargain at twice the price, but it is irritating they wouldn't pay for something that obviously works so well.

I had some issues getting off crutches. Initially, I went from NWB to full weight bearing in 4 hours. Bad idea. Three days later I could barely put any weight on it, at all. I went back on two crutches and PWB, and spent two weeks going from two crutches to one, then to a cane, and finally to full WB. My foot and hip hurt some for awhile after that, but improved strength helped that over another week, or two.

My surgeon told me not to run 'till I was 4 months post-op, which will be November 11. I think I'm going to wait, for a couple of reasons. First, I've heard of others getting advice to avoid running for 6 months. Second, I want to be back to "full strength" with respect to walking uphill on the treadmill. For me that means being able to burn 600 calories walking at 4mph up a 4-10% grade. I can handle the grade now, but am only up to 3.6mph, due entirely to some hip irritation at faster speeds. That's getting better, but I'm a few weeks away from where I need to be before running. I'll update again when I've run some.

Mark

Last edited by ScaldedDogCO; 10-21-2013 at 09:21 AM.

 
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Old 01-23-2014, 09:14 AM   #13
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Re: 54yo runner with OCD/talus considering DeNovo

This doesn't seem to be working out as well as I'd hoped. I still haven't run much - less than 5 miles, total, spread across thirteen days over the last couple of months - but my ankle is hurting a lot. The first few steps out of bed hurt a lot, and there is frequent pain when I'm barefoot. Oddly, it doesn't hurt much when I have shoes on. My activity level is up, so I'm better off than I was before, but I can't imagine being able to run consistently like this. There is a lot of popping and cracking, which usually relieves the pain for short periods. I've started PT again, on the bet that the DeNovo implant is fine, and that the issues are caused by scar tissue. We'll see how that works out.

Mark

 
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Old 03-31-2014, 11:57 AM   #14
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Re: 54yo runner with OCD/talus considering DeNovo

You are brave for even thinking about running. Personally I think the graft takes a long time to harden and it gradually gets used to more impact. I'm 29 and had denovo 6.5 months ago. Most days I'm pain free. Sometimes it flares up still because I get aching pain kind of similar to what I had before and makes it not comfortable to walk. I had ligaments done too. I'm hoping it's just inflammation of the soft tissues because it s not constant. Swimming and biking makes a real difference. I'm not going to attempt running anytime soon even though I think I could handle a light jog. learned that there's a lot of ups and downs with this type of surgery. How are you doing Mark?

Ted

 
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Old 06-09-2014, 09:55 PM   #15
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Re: 54yo runner with OCD/talus considering DeNovo

Dear Umtum,

I'm also having this surgery in LA with Dr. Richard Ferkel later this week. Who did your surgery? Did your insurance company cover it? Thanks - L.

 
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