Messages

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Ankle / Re: Doctor is saying go straight to OATS

« on: October 27, 2018, 09:12:34 PM »

Yes, I was, particularly by Kennedy. I'm not super motivated by that though. When I start seeing more predictable successes with the surgical options available, I'll start considering surgery #2. As it is, I'm too discouraged by the dismal outcomes of the "90% success rate" surgeries. If/when my ankle deteriorates further, I'm still eyeing the ExoSym as my solution.

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Ankle / Re: Doctor is saying go straight to OATS

« on: October 26, 2018, 06:12:13 AM »

If I recall, it was 8mmx15mm and it was uncontained. My surgery was Jan 2016 and my last MRI was Sept 2016. I'll probably get another MRI this year just to see what's going on but I'm not very keen on another surgery. Currently my ankle handles everyday life fairly well. It's not a normal ankle but I know how to manage it. I'm still planning to get the ExoSym in 2019 which is really my solution to having lost faith in surgical options.

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Ankle / Re: Doctor is saying go straight to OATS

« on: October 24, 2018, 02:18:27 AM »

I was a borderline case for Kennedy. Prior to surgery, he told me he might go with OATS if my lesion was any bigger than what my MRI indicated. He got inside, lesion was not as big as his threshold for OATS. He did MF + Biocartilage + BMAC. And it didn't work. i was terrified of OATS then but sure wish now that my treatment was different.

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Ankle / Re: Denovo v OATS for second surgery

« on: August 06, 2018, 11:58:31 AM »

Another possibility instead of surgery: http://www.hangerclinic.com/bracing-support/adult-le/pages/limb-salvage-Exosym.aspx

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OCD Surgeries / Re: Microfracture/Denovo vs. OATS

« on: June 11, 2018, 10:29:04 PM »

Wishing you a great recovery! I too liked Dr. Kennedy better than anyone else I consulted. Keep us posted on your progress.

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Ankle / Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle

« on: June 08, 2018, 03:27:40 PM »

Hi everyone,

Coming back on to update where I am these days.

Surgery was Jan 25, 2016 at HSS with Dr. Kennedy.

So not a whole lot has changed since my last post. It's funny how many great and not-so-great things are true all at the same time, like...

My ankle is definitely a cranky post-surgical ankle that is not the same as it once was.

And yet, I manage to do basicially everything I want to do, day and day out, with very little trouble.

That being said, I have never gotten back to the super active lifestyle I once had. No running or adventure hiking and very little "easy-hiking".

And yet, the last four days I have walked three very hilly miles every day in an attempt to once again regain the walking life I used to have. (I used to do tons of walking/running/hiking and I keep trying to at minimum salvage the "going for regular walks" part (in addition to day-to-day living life walking). So far, it's holding up ok (12/miles in four days) and I intend to do the same three-mile loop again today.

I've been traveling a lot lately and my ankle has been handling airports and travel and walking around towns/cities just fine. Not a ton of walking every day but somtimes 2-3 miles/day of on-my-feet activity with little to no pain.

And yet, every morning my ankle is stiff and cranky and sensitive for about the first 10 minutes of walking. This seems to be my new reality. (Reading my journal above I see in my last post that this got better when I was doing Pilates, which I've stopped doing. Hmm.)

I started a new business a year after surgery and the stress of that, combined with losing my favorite athletic activities, has resulted in a 30-lb weight gain. I'm currently working like mad to get the weight off. In my previous life I had fairly constant intense activity which was always my go-to for remaining strong and as lean as my body will let me be. Reversing weight gain without intense, regular activity is a new thing for me. I've dabbled in Pilates, yoga and CrossFit. I wish I loved them like I loved running and hiking...but I don't.

I haven't had a MRI since 9-mo post op. At that MRI, there was still a defect. I haven't been motivated to get an updated MRI for two reasons: 1) I'm doing "well enough" that I woudn't consider another surgery at this point, and 2.) If/when my ankle deteriorates further, my solution is the ExoSym, not further surgery (until something better comes along...)

the ExoSym is on the agenda for 2019...

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Ankle / Denovo NT

« on: February 27, 2018, 01:10:08 PM »

Hi all,

For those of you researcher types, I'm curious about your thoughts regarding Denovo NT.

I had surgery two years ago on my right ankle (MF, Biocartilage and BMAC at the Hospital for Special Surgery.) After all my research, this seemed to be the cutting edge treatment. My surgery has not been fully successful and in addition, I likely have the same condition in my left ankle.

As I start thinking about surgery #2 (someday- I'm not ready yet) -- I'm wondering about Denovo NT. I have read several success stories over the last few years but Denovo has fallen off the radar as far as news/updates/trials. I know at HSS my surgeon did not believe it was the best route for long-term success.

But...many people who have it (esp as a 2nd surgery) say it was superior to MF and that they knew right away that their ankle was improved.

Thoughts from anyone? Why isn't Denovo NT in the news anymore (and by "in the news" I mean for those of us that dig around the internet looking for every scrap of info there is to find about OCD.)

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Ankle / Re: Observations about my consultation with Dr. John G. Kennedy at HSS

« on: January 17, 2018, 05:23:24 PM »

Hi Melbusefi,

Take a look at my post surgery journal here: http://osteochondraldefect.net/forum/index.php?topic=247.0

My last post is still current status for me.

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Ankle / Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle

« on: November 08, 2017, 02:20:20 AM »

Hi everyone,

I'm 1-yr and 10 mo post surgery (it will be 2 years on Jan 25). Up to now, I've had mostly discouraging updates. Good news recently is my ankle drastically improved to the point where some days (most days?) I feel zero pain. Previously I'd have far too many bad days (unpredictably, too.) I also would limp every morning for the first 30 or so steps when getting out of bed. Many days, I'd feel OK for part of the day only to deteriorate into pain and limping by the end of the day.

Now, most days are quite good. I don't limp getting out of bed and I'd say on many days I'm walking as many as 3-5 miles throughout the day (sometimes consecutively for a few of those.) I don't think about or limit my daily activities anymore (i.e. can I go to Place A and Place B and still be pain-free?)

Heres what I started doing. Pilates.

My current take is this: I hadn't properly rehabbed post surgery. In Pilates (3x/week) I'm stretching and strengthening in ways I hadn't before.

As a point of example, I walked about 4/miles the other day and was on my feet all day. By the end of the day, my ankle was pretty fatigued and I was limping a bit (so this still happens.) But what I'm not really feeling any more is that medial defect pain. Is the defect still there? (It was on my 9/mo MRI and I'd venture to guess the surgery was not a complete success- but maybe I'm wrong about that.) I don't think I can hike 8 to 10 (or 20!) miles as I used to do pre-injury; however, I am fully back to a normal active lifestyle, pain-free (I can still tell I've had surgery with some stiffness and lack of full ROM) but I'm basically pain-free.

I'm going to haul myself in for an MRI when I hit two years. If I need that Exosym Brace to get back to hiking, I'm going to get it. But my current state is: pain-free active life day-to-day...and that ExoSym will get me back to being an athlete  (if continued strenghtening doesn't do the trick.)

2018 is the year of full activity once again, one way or the other.

This is a LONG journey. I'm finally feeling really good.

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Ankle / Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle

« on: September 02, 2017, 12:51:47 AM »

Hi Alan, thanks for the note. I prefer to hold onto hope - seems a better headspace for me.

In the meantime, I'm going here: http://www.hangerclinic.com/bracing-support/adult-le/Pages/Limb-Salvage-ExoSym.aspx

There's an amazingly encouraging Facebook group too of people with ankle injuries who are hiking, running, living very active lifestyles with ExoSym - many stories of people with OCD and ankle arthritis and tons of encouraging stories of people with even more severe injuries getting their lives back. Facebook group is 

https://www.facebook.com/groups/exosym/

Once you join the group, click here to find the conversation I started about our particular injury: https://www.facebook.com/groups/exosym/search/?query=shires

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Ankle / Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle

« on: August 27, 2017, 05:14:10 PM »

Hi everyone,

I'm back with an update after having taken a long hiatus from wanting to talk much about my ankle.

I wish I had a better update but I'm afraid that about 1-year and 8-months post surgery, my ankle, all in all, is still worse than before. I have not had an MRI since 9-months post op. I suspect that sometime in the next 6 months I'll rally again to the point of facing a new MRI and next steps from here.

At 9-months, there was a crack in the new cartilage on the medial side that had allowed fluid beneath the surface and caused a bone cyst (something I didn't have before surgery). Post surgery, I also did not recover my full range of motion (dorsiflexion is limited despite a valiant effort to recover it.) I also seem to have a lot of scar tissue that was seen on MRI and is certainly felt.

I have some good days and even did a 4-mile easy hike last month. The problem is, every time I try to step up activity, I have a set back. I also have out-of-the-blue bad days for no apparent reason.

For activity, I've taken to Pilates, yogo and kayaking. I'm thankful to be able to have these activities and yet still miss being the avid hiker and occassional runner I once was.

As an aside, I'm 95% certain I have the same condition in my left ankle.

It is frustrating to have an injury where there's no clear next step.

Bit of a bummer of an update, I'm afraid.

Hoping others are experiencing healing and success.  I scour the internet weekly for updates in stem cell trials and research. The optimisim around stem cells for cartilage and bone healing is one of the only things that keeps me hopeful about returning to pain-free activity one day.

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Ankle / Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle

« on: December 08, 2016, 07:56:47 PM »

Hey everyone,

It's been a while since I've updated. I've been navigating the ups and downs of surgery recovery. The long and short of it is, at 11 months post op I'm in more pain with less mobility than before surgery.

I saw my surgeon, Dr. Kennedy at HSS, in mid-Oct at about 9-months post-op. I haven't felt like I've recovered on track and my MRI at that point confirmed there's an issue.

The lateral lesion had filled in 100% and he thinks that fix will last a lifetime.

The medial, bigger shoulder lesion has filled in pretty well- he says my body has done a good job creating cartilage. The problem is/was there's a small crack in the new cartilage (he couldn't actually see it on MRI) but said he know it's there because I have a small cyst and quite a lot of edema beneath the cartilage. This is where my pain is coming from. He said this was a bone issue, not a cartilage issue.

So I'm not in the 85-90% of people who would have moved on by now which explains why I've been having so many problems.

He said it's too soon to call it a failure (it sounds like a failure to me???) and that he wanted to do everything we can to avoid a failure.

His first recommended path: one round of PRP. He believes this will resolve the cyst and fill in the crack. (65% of these issues resolve with PRP.)

If that doesn't work, he would do a BMAC injection right into the defect.

If that doesn't work, OATS.

Fast forward to today...I did do the PRP about 5 weeks ago. I feel like it might have felt better for a while but I'm back to limping and counting steps again.

11 months post-op and not only am I in more pain, I also never recovered my dorsiflexion. Walking downstairs is not easy (I side-step mostly). Dr. Kennedy noted that the bone cyst was medial (I do feel it very specifically from time to time) but I have pain all over the ankle...front and back, which I never had before. Perhaps this is from the restricted ROM. He recommended Shockwave therapy to get rid of scar tissue. I did it once- $600. Did it help? Maybe? I should do several more sessions but after spending thousands of dollars on things that haven't worked, I'm hesitant to waste more money.

I went at all this with such gusto in the beginning...finding the best surgeon at the best hospital with the latest and greatest techniques. Now I find myself exhausted and skeptical of making any other move. What's the next move? I know I need to make one but I'm so darn discouraged.

I'd love to hear from anyone who has had success with BMAC/stem cell only injections. I've read a lot about it but haven't seen much in the way of tangible success stories.

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Knee / Re: OCD knee surgery

« on: October 18, 2016, 05:59:25 PM »

A great success story here.

http://www.lgsmash.com/my-knee-story/

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Ankle / Re: Concerned

« on: October 11, 2016, 07:27:20 AM »

That's good news! I have one next week as well, 9 months post op. Still having some issues that I'd hope would have resolved by now. Keep us posted.

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Ankle / Re: Debridement, Biocartilage + BMAC at HSS

« on: August 15, 2016, 04:03:55 PM »

Woohoo!