Author Topic: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle  (Read 21926 times)

Offline ocdnetadmin

  • Administrator
  • Full Member
  • *****
  • Posts: 171
  • admin
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #45 on: September 01, 2017, 01:42:59 PM »
Christina, I'm so sorry to hear.

Unfortunately this is the reality for many of us.

Personally I have Accepted that I will never return to the same athletic levels. It sucks but it is what we live with.

Also, I started following those new stem cell surgeries as early as 10 years ago. There has been very little progress, IMO. I don't expect them to make significant breakthroughs in this area for the next 30 years. I know it's hard to hear but I think it's healthier to accept the situation rather than cling to the "hope" of these stem cell developments. They're not coming anytime soon and when they do come we'll be old and dead

just my 2c sorry to hear about everything

Offline cshires

  • Jr. Member
  • **
  • Posts: 69
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #46 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


Offline ColSteve

  • Newbie
  • *
  • Posts: 30
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #47 on: September 03, 2017, 03:27:49 PM »
Hi Christina, Sorry to hear about your recovery and your other ankle.  Glad you have found some other activities, but understand your missing hiking.  Your ExoSym link was really interesting.  It is nice to know that there are additional options!  Good luck!

Offline cshires

  • Jr. Member
  • **
  • Posts: 69
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #48 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.

Offline DVJohn

  • Newbie
  • *
  • Posts: 3
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #49 on: November 08, 2017, 04:56:02 AM »
Hi Christina,
It's great hearing of your rehab. Congratulation!
I hope it will go really well and you soon get back to the normal active life.
Be sure to have the MRI for thorough evaluation prior restarting the high impact activities.
I am new member here, but have read through your threads, knowing you've been struggling with your ankles for quite a long time.
I also have the left ankle OCD on medial side, but not get it treated yet. Hence I have no experience to share.
I live in SEA and there are limited options available locally for me to take, only conventional microfracture and less possibility for OATS.
I travelled to Singapore (the most advanced medical center in the region) last week and surgeons there recommended Microfracture plus HYALOFAST. BMAC has not been approved there to assist as part of HYALOFAST procedure.
Unfortunately, there is limited clinical record about HYALOFAST, particulary for talus lesion. It is approved for use in EU more for the knee. It has not been approved in US yet, but currently on clinic trial in US for knee treatment.
The producer of HYALOFAST declared that it helps to regenerate hyaline cartilage, however, the surgeon just told me that it is still fibrocartilage.
This again discourages me. But I may have to take it as a clinic trial case b/c there is no other option for me here.
I know in another thread that you also mentioned the HYALOFAST as a future trend in the talus cartilage repair.
Are you still being around with this new product? Any thing can you share?
Take care and good luck to you.
John

Offline MoeH

  • Newbie
  • *
  • Posts: 7
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #50 on: January 17, 2018, 08:10:50 PM »
Great attitude, Christina

And you underwent a wedding after surgery. Congratulations, and thank you for sharing!

Offline MoeH

  • Newbie
  • *
  • Posts: 7
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #51 on: January 17, 2018, 08:35:13 PM »
Christina, isn't this (crack in cartilage) something Mayo Clinic in MN and Regenexx say they can fix with precision guided stem cells (cultured stem cells in Regenexx-C)? Did you consult with them already? I wonder how they would classify your case on their scale of poor, fair, and good prospect.


Also, did Dr. Kennedy or his team go over post-op nutrition and therapy details? From your most recent report it sounded like a soft tissue thing for the most part, hence the relief brought on via Pilates. I wonder what your therapy program was like. Was there proper manual therapy? things like ART, Graston and IASTM? Did you consider fasting for regenerative purposes post-op?



Offline cshires

  • Jr. Member
  • **
  • Posts: 69
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #52 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...

Offline pds

  • Full Member
  • ***
  • Posts: 113
    • View Profile
Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #53 on: June 13, 2018, 11:37:36 PM »
Christina,
Thanks for the update. Sorry to hear you're not yet active to the point you would like to be, but I'm glad you're able to do most of your activities during the day without pain. I totally understand the balance of not being 100% happy with what you've got, but not wanting to go under the knife again. I managed that for the past five years until suddenly my ankle gave out this spring and effectively made the decision for me. I hope you keep getting stronger.

Thanks for the info about ExoSym. I had not heard of that. I was up almost all night watching testimonial videos about it and researching it. It looks fascinating. People are jumping and running and everything. It looks amazing. Have you visiting their clinic or taken any initial first steps with them yet? I just did OATS and am hopeful, but some of the docs I've talked to were pretty honest that I'm at risk for an ankle replacement or fusion later down the road if this all continues, and that just seems terrible. I've contemplated voluntary amputation instead of that. People can get around pretty good on those hooks. But the ExoSym seems amazing. I feel hopeful about the OATS, but it's good to know the ExoSym is an option. Thanks for mentioning it!
-Paul