Author Topic: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle  (Read 22246 times)

Offline cshires

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #30 on: May 04, 2016, 03:30:30 PM »
Well I've had a pit in my stomach for the past two days because I have been having quite a few occurrences of that sharp, catching pain that you mentioned. In fact, I had just called my surgeon's office to talk through this prior to checking the forum.

The thing is, my surgeon's protocol was (and I quote, at 6-weeks)-- "Start treating it like a normal ankle." Of course, it was/is no where near normal but I have pushed myself to be walking more and more because his expectation was that it was the right thing to do.

The sharp pain is new and stops me in my tracks.

Offline SCSankle

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #31 on: May 04, 2016, 04:56:14 PM »
I'm sorry to hear about the sharp pain and hope that goes away on its own.

I'm 6 months out and still not treating this like a normal ankle. My surgeon told me that it will heal well (though really slowly) but that it will never be like the ankle "God gave you." He also said he's had zero recurrence in his patients that wear the brace until 1 year post surgery. I was 8 weeks no weight and 4 weeks partial weight. Since then I have good days and bad, but seem to be on a constant upward path.

Listen to what your ankle is telling you and stop exercise with pain, ice and rest it until it's better, try picking up your activity once it feels better.

To this day if I have to walk around a mall for more than an hour it seems that I'm limping for days afterwards. I don't know what the heck they make those floors out of...

Offline cshires

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #32 on: May 04, 2016, 08:08:47 PM »
I talked at length with Dr. Kennedy's PA today and his POV is that I have an angry tendon, brought on by too much activity. He thinks it's a temporary set-back, but I'm dialing my activity way back for now. That sharp pain will make you reconsider everything. Here's hoping it's all tendon related!

Thanks SCS for the message. Btw, what brace are you using?

Offline SCSankle

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #33 on: May 05, 2016, 12:38:45 PM »
It's called an ASO brace...soft lace up thing.
No idea what ASO stands for!

Glad to hear that what you're experiencing will likely get better with rest.

I actually had an issue at about the 15 week point where the outside of my foot was killing me. My body was protecting the area of my surgery by putting all my weight on the outer metatarsals. I didn't even realize I was walking that way. I spent a couple days back in the aircast and concentrated on distributing my weight evenly and the foot pain cleared up.

Hope you're feeling better before you know it!

Offline BLT

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #34 on: May 05, 2016, 12:49:56 PM »
This is what I used:
http://www.medspec.com/OnlineProducts.cfm?ID=1

If you do decide to use this one, DO NOT dry it in the machine. It'll ruin it's shape.

Do you still have your boot? Wear that while your ankle heals before you ramp up activities again. I'm still really surprised that the OS recommended you "treat it like a normal ankle" this early in the recovery process.

Offline SCSankle

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #35 on: May 05, 2016, 01:08:33 PM »
That's the one I use, too. Love it.

Offline cshires

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #36 on: May 05, 2016, 03:06:57 PM »
If you recall, I also went straight into a shoe at 6-weeks. I never walked in a boot per their protocol. Their PT protocol also has "return to sport" listed at 3 months, too. They must see success following these guidelines, although it sure does seem aggressive when compared to others. All this of course has to be taken in tandem with listening to your own body. I think I pushed a little too hard trying to up my walking distance.

Thanks for the brace info, and BLT, yeah,  I am considering putting the boot back on for a few days... Lying low today to see how that goes. So far, I've not had any sharp pains.
« Last Edit: May 05, 2016, 04:27:04 PM by cshires »

Offline cshires

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #37 on: August 05, 2016, 04:28:12 PM »
I was thinking the other day that I needed to come back here and give a status update. Unfortunately my status has changed a bit recently but here it is.

While my ankle has never been back to normal since surgery (almost seven months out) it has felt like it has been slowly improving (going downstairs has still been difficult and I still don't have all my dorsiflexion ROM back). But, I have been able to mostly walk without a limp and also have been able to walk better on uneven ground again. All this felt like I was on the right trajectory. I had an MRI about two months ago (which felt too early to me) and the MRI still showed the defects were still present; however, my surgeon's (Dr. Kennedy's) feedback was "looks like a normal, healthy recovery." I decided to not obsess about things and just let time pass since I know recovery is long. That mindset has worked well for me and while I haven't been able to get back to my previous normal life, I have been able to do many, many things for which I am thankful.

But several days ago I started having a pain on the medial side- feels like it's right within the joint. If I don't flex my foot while walking, I can sometimes avoid feeling it. It only occurs with weight-bearing and with that "walking/dorsiflexing" motion. It's a sharp, catching pain.

I have had a couple busy weeks with getting married and being on a honeymoon...all which went well. Some days I bet I had as much as 1-2 miles of walking around...and day after day of being on my feet which is not the norm. And all in all, it felt pretty good. But now? My walking is quite limited- just around the house. I walked across the street to grab lunch earlier today and it was both painful and difficult.

Trying to wait it out, reduce activity and not fret too much. Advice, encouragement and perspective welcomed!

(edit: I just read through my last updates and realized the last time I updated I was experiencing something similar after having done a mile walk. The pain is in the same basic area. This time, it comes on more often while walking and has lasted a bit longer. I'm wondering (hoping) if this is simply a consequence of a lot of activity since this occurred last time I was active. Perhaps during recovering if we push too hard, we have set backs? The day before this setback I had walked about a half-mile on the beach and spent the day walking around an aquarium. That is more activity than I normally have. So if this is brought on by too much activity, I wonder what it is that gets aggravated?

« Last Edit: August 05, 2016, 04:41:40 PM by cshires »

Offline BLT

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #38 on: August 07, 2016, 11:37:13 AM »
cshires - Give it time to pass. If it helps, get back on the boot for a week. Remember I freaked out when I had some noticeable inflammation? It went away after a week. These short moments of panic and fair will come. I wish as much as you that it didn't, but hang in there.

If a month later it still feels this way, I'd say go back to your orthopedic.

And congratulations on getting married!!!

Offline cshires

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #39 on: August 11, 2016, 04:43:08 PM »
BLT, thanks for your message and thanks for continuing to come on here to encourage those of us who are still going through the fire. It helps a lot.

I'm going to document here in my thread the email I sent yesterday to my surgeon's office. Hopefully one day soon when I've recovered from this setback it will provide encouragement to someone who else who is experiencing a discouraging setback of their own.

I'm still waiting to hear back from my surgeon. I have a feeling he's going to recommend a MRI. I just had one in May (5-months post op) so I'm not super inclined yet to get another but we'll see. In the meantime, I'm cutting back most walking except for short jaunts in/out of places and am instead focusing on really stretching my ankle, and doing functional strength exercises. I'll update in another week or so.

--------

Email to surgeon:

As per our conversation, here are the symptoms I'm experiencing (I'm 7-months post-op). Up until eight days ago, I was getting around fairly well. Not yet normal- still have issues with soreness and swelling and trouble going downstairs, but overall my ankle was seeming better month after month.

However, symptoms beginning 8 days ago:

Initially, I started having an isolated pain on the medial side- feels like it's right within the joint. If I don't flex my foot while walking, I can sometimes avoid feeling it. It only occurs with weight-bearing and with that "walking/dorsiflexing" motion. It's a sharp, catching pain.

Now, the medial pain has improved somewhat over the past few days but it has been replaced with a soreness and tenderness that feels more "all over". The front of my ankle (and the base of my shinbone) is tender and sore, especially while dorsiflexing.

And, a new symptom is that the back of my heel (at the base) hurts, especially when walking. There is a snapping feeling that I feel at the base of my heel when I rotate my ankle.

Also, ever since surgery my ankle is quite"crepitus-y" when I rotate it. A fair amount of noise and cracking (but no pain). Maybe this could be from unresolved scar tissue?

For the last week I'm unable to walk more than a couple blocks (and this is not easy) -- whereas before that I was able to walk and get around with most daily activities (all day on my feet on some days) without much pain or discomfort.

--------
« Last Edit: August 11, 2016, 04:54:29 PM by cshires »

Offline jnj15

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #40 on: September 14, 2016, 01:38:04 PM »
Christina, first of all, congratulations on the wedding!

I am sorry you're still struggling a bit with the ankle, but hope that things may still be improving. Have you tried walking around in a boot when it flares up at least (maybe for a few days or a week), to ease the stress on the joint as it heals?

Good luck, we're all pulling for you!

Offline cshires

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #41 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.


« Last Edit: December 08, 2016, 08:02:18 PM by cshires »

Offline CrankyAnky

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #42 on: January 07, 2017, 01:56:14 PM »
cshires: I've just been an occasional lurker on this forum over the years until now. After reading your most recent post and noticing the similarities between our cases, I felt compelled to participate.

I will attempt to abbreviate the details of my treatments/surgeries to those that apply to your situation:

I was surgically treated for a ~13-mm x 8-mm osteochondral lesion, with an underlying ~4-mm bone cyst, on the anteromedial shoulder of my talus about 2.5 years ago. After arthroscopic debridement and microfracture, I received an allograft-particulate/BMAC bone graft and an overlying BioCartilage/BMAC cartilage graft. Side note: the bone cyst developed over just a 3-4 month period (since a previous MRI and surgery) and, after it formed, it caused new pain patterns that were joint-wide; these ranged from deep/sharp knife pain through the talus with certain weighted positions to capsular-impingement pain along the joint perimeter, including the posterior part of the joint.

Four months later I had an additional scope procedure to remove extensive scar tissue that had formed during the 6-week non-weight-bearing phase of my previous surgical recovery, which ended up limiting my dorsiflexion to just ~0-5 degrees. This provided ~10-15 degrees of post-op dorsiflexion.

After an additional 14 months, I had another surgery to address medial and posterior impingement by removing bone spurs, synovitis, and more scar tissue.  At that time, I had full coverage of the BioCartilage graft tissue, however a full thickness fissure was identified along the anterior margin of the graft. The bone beneath the fissure was drilled twice with a K-wire, and the joint was injected with BMAC at the end of surgery.  Despite the drilling, I was allowed to weight bear immediately following surgery, owing to the structurally supportive nature of the surrounding native and reparative cartilage tissue.

I had yet another surgery 6 months later to address recurring medial impingement and enhanced talar edema, both of which were likely caused by medial joint instability (the jury is still out on this).  At that time, the previous cartilage fissure had completely filled in, however the BioCartilage reparative tissue had hypertrophied across the remainder of the graft surface. This was shaved back down to the level of the surrounding native cartilage surfaces.  It's not clear whether the hypertrophied tissue was caused by normal growth or was induced by the K-wire drilling and/or BMAC.  Apparently, it's not uncommon to have this type of overgrowth behavior with BioCartilage and DeNovo grafts. It's also not possible to determine what the respective contributions of the drilling and BMAC were on the the fissure repair.  I did receive another BMAC injection after this surgery.

So I feel your pain, both physically and mentally. The last 5 years (including 8 ankle surgeries) have been the most exhaustive and discouraging of my life. For me, I have no choice but to fight this to the bitter end, since my core connection to this world is through self-powered motion. However, I would not judge you or anyone else for calling it at some point and moving on, for the fight over the long haul does not come without a steep personal and financial price.

Would be happy to provide any more details that you feel may help your situation. I am willing to do that either here online or offline.
« Last Edit: January 07, 2017, 03:15:11 PM by CrankyAnky »

Offline ocdnetadmin

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #43 on: January 10, 2017, 01:28:23 AM »
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 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.


These are the kind of stories I hate to see. but they're a reality many of us deal with..
Christina, thank you for sharing. I don't have any medical-related info to share with you as I have not gone down your path (just MF, but no BMAC) but just wanted to let you know I understand your discouragement.

One question: Is your ankle worse than before the surgery?
(edit: looks like from your last post that you're "feeling pain you've never felt before")

Something kind of similar happened to me. My ankle after MF didn't feel "better". It was worse in some ways, better in others, so overall maybe a wash, and not worth the time and money and risk. That's when I finally understood why my first doctor was reluctant to operate and wanted to try a conservative approach. I was so deadset on getting back to athletic activity that I didn't understand how serious this injury was and wanted to try something, anything that would let me avoid this new fate where I wasn't an athletic god anymore. I didn't want to let go of that part of me because I was scared that without it I was nothing. Since my MF which was 8 years ago I have not done anything to the ankle and despite my activity on the forum have not researched anywhere near as much as some members have (seriously thanks guys. starting this forum was the best thing I could have done for my lazy self). OATS sounded invasive and I never had the stomach to go through the surgery experience again because what if my ankle got worse? There wasn't anything left after OATs. If that failed I was stuck with one good leg pretty much.

You know what's kind of ironic. There are athletes out there sprinting and playing sports with one leg and one metal leg. Meaning there are people who don't have a knee or an ankle on one of their legs and they can still walk, run, even jump better than we can.

Anyways, sorry for rambling on about myself. Just wanted to share a bit of my story with you and maybe provide some perspective. If you can reach a point where your ankle is "good enough" for daily activities i would consider that a win for most people. MF frankly does take time, 11 months is still early. There are troubling signs for your medial side, maybe ask Dr Kennedy if he can do it again? I know some get MF multiple times.

Anyways, best of luck. come back and rant whenever you feel the need to.
« Last Edit: January 10, 2017, 01:41:15 AM by Alan »

Offline cshires

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Re: Post surgery journal: MF/BMAC/Biocartilage for OCDs in right ankle
« Reply #44 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.