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Author Topic: Declaring war on arthrofibrosis  (Read 11474 times)

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Offline rbexc

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Declaring war on arthrofibrosis
« on: December 20, 2013, 03:49:13 PM »
Yesterday (12/19/2013) was my fifth and hopefully final surgery!

A "quick" history of my left knee:
4/1/12: completely torn ACL, partially torn MCL, tears in medial and lateral meniscus
6/21/12: ACLr w/ BTB autograft, partial medial and lateral meniscectomies
8/14/12: partial lateral meniscectomy, synovectomy, capsular release, LOA, cyclops lesion removal, MUA, notchplasty, chondroplasty, prominent screw trimming -- first time seeing LOTS of scar tissue but not dx w/ arthrofibrosis
3/19/13: partial lateral and medial meniscectomies, ACL debridement (20% anterior tear), chondral debridement, LOA, capsular release, lateral release, scar revision -- officially dx w/ arthrofibrosis
7/3/13: tibial hardware removal, tunnel debridement from screw related inflammatory response
12/19/13: ?!?!?!

Leading up until yesterday, I was still having a lot of trouble with full extension and stiffness. I always have been able to get full extension (except for after my first surgery) relatively easily-- within the first five days post-op. However, a few days after that, I can already feel the AF start to sink in. I can feel the movement of my joint change ever so slightly, as it won't glide as freely, even if my ROM hasn't changed. Soon enough, I start losing degrees in such small increments that it's hard to notice that it's even happening. I've never had terrible ROM, missing at most 5-7 degrees from 0 extension and ~25 from flexion. Not optimal, but definitely a functional level.

After my third surgery in which I was officially diagnosed with AF, we went about post-op with cortisone injections at 1 and 6 week post-ops and NSAIDs for a month, coupled with a conservative rehab protocol. This worked relatively well, although in retrospect, there're things we could've done better. However, after my last surgery in July (not a scope), the AF flared up so badly which led to the fifth surgery I had just yesterday.

To my surprise, my surgeon had put in a hemovac after surgery. I didn't realize I had one until the nurse commented that she had to remove it right before I left. I was pleasantly surprised to hear that he had put one in, as I had told him during my pre-op visit that I had massive bleeding problems after my last scope. Also, when I saw him right before going into surgery, he had also asked about my scars. I have keloid scarring and while it probably is related to arthrofibrosis (I scar as badly externally as I do internally), I think a large part of it could've been prevented if the steri strips had stayed on. He asked how long I had kept the steri strips on before, and I told him that they had always gotten so saturated with blood that they didn't stay on even through the first night out of surgery. He surprised me yet again by closing up all my incisions (three new ones!) with plain old stitches. The combination of these in conjunction to whatever he did in surgery has worked extremely well, as I've never had such little bleeding post-operatively!

As my surgery was the first surgery of the morning, I was able to get discharged in time to go to a PT appointment in the afternoon. We didn't do much, just a lot of (small) passive motion exercises and gentle patellar mobes, followed by pedaling back and forth with the good leg, while the bum knee went along for the ride, and concluding with ice. My PT wants me to get a CPM so my knee doesn't get stiff at home. I tried calling into the office with the request, and my ortho's secretary made some remark about how my OS typically doesn't like to prescribe CPMs because he feels the patient should be the one doing the work to get ROM, but in my case, I'm not using it to improve ROM. I need it to avoid stiffness and to minimize the opportunities for AF to settle in!

Anyway, I have my second PT appointment in two hours from now. Hopefully, my PT was able to call in and speak to my surgeon in time, as she wants me to have the CPM ready for the weekend. I also hope my OS will call today, as I'm really curious as to know what exactly went on during surgery!
« Last Edit: March 23, 2014, 10:47:01 PM by rbexc »
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline IHMK

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Re: Declaring war on arthrofibrosis
« Reply #1 on: December 20, 2013, 06:36:26 PM »
I'm wishing you the very best with this - it sounds like you have a great plan in place. I hope the communication issue with the OS' office is resolved and you get your CPM machine ASAP since it will make a big difference for you. I'm sure it is frustrating dealing with people who don't get what it is you're up against!

It sounds like your PT is a gem.
My knee story: http://www.ihurtmyknee.org

28 March 2013: tore right ACL (also meniscus tear, MCL tear ["Unhappy Triad"!!], tibial plateau fracture & condylar bruise)
28 June 2013: surgery to reconstruct ACL (allograft)

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #2 on: December 21, 2013, 12:51:05 AM »
Thanks, IHMK!

My PT is amazing. I only started working with her this August and we've spent the past few months really getting to know how to work with each other. It seems like all the stars are aligned for this surgery-- I'd been keeping a journal since my first surgery and so I have my own "rehab notes" on what does and doesn't work for me from the very start. My surgeon has pretty much given me and my PT a free rein on rehab protocol, as he says "I know my knee the best" (he hasn't done any of my previous surgeries). I compiled a summary of my notes for my PT, and she says even though we're going against "all conventional post-op protocol", she'll trust my notes because I've kept them so detailed and she knows I'm committed to this rehab.

Today was day #1 post-op for me. I'm 1 degree away from 0 in extension, and with her working on my knee, I went from 84 to 101 flexion.

Unfortunately, it seems as if I won't be able to get a hold of the CPM any time soon. The secretary at my ortho office seems completely clueless as to how I should be obtaining one and she tried to dump that to my PT. My PT says that therapists never order the CPM for patients, and that it needs to come from the surgeon's office. For some odd reason, my ortho was out of office today and I missed his call from a restricted number, so I still don't know what exactly went on in surgery!

Also, one of my incisions seems to have been stitched up way too tightly. My skin wrinkled underneath it, and the friction from moving my knee is causing it to blister. If I can't get a hold of my surgeon over the weekend, I think I'm going to go ahead and take out the stitch myself since the incision has closed up completely and I've taken out stitches before!
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #3 on: December 22, 2013, 03:14:14 PM »
Day #3 post-op! Although it's only 7:02 AM here, so I'll just recap day 2  ::)

Yesterday went by without much of a hitch. I've been doing the ROM exercises and patella mobes religiously, and by the end of the day, my knee seemed to be gliding a lot better than it had been in the morning. I also started quad sets today, as well as SLRs and some hip exercises. I wanted to avoid quad sets until I could do them without the "wrong" kind of pain. In the past if I had started them too early, it just felt like I was smashing my patella through swelling and it would cause more harm than good. I found somewhere on here Heather's guide to "gentle" quad sets, and it's actually helped a lot. The problem right now isn't getting the muscle to fire, but the actual firing of the muscle makes my VMO feel really, really sore. I think that's because of the superomedial portal that was used-- they had to disturb (to put it nicely) the VMO to get to the knee, right? This is my fourth scope, and I've always only had two incisions so this whole sore VMO thing is new!

I think I have 0 extension, as propping my ankle up on a foam roller is no longer painful and I don't seem to be able to push down any further. I'll still do the extension exercises because my problem has never been getting extension, it's maintaining it! I'm excited to see what my PT measures my ROM to be when I go back tomorrow.

I think even on a subconscious level, my mind is so freaked out about the arthrofibrosis settling in to the point where I'm waking up multiple times during the night to check on my knee (stiff, but that's because I don't really move when I sleep). This is where a CPM would help tremendously, but even with the help of my PT, my ortho's office seems to be completely clueless as to get one for me. I'm guessing at the earliest, I'll be able to get one by the end of this week if at all. When I wake up throughout the night, I end up doing ROM exercises and patella mobes until I fall asleep. That usually takes 30-60 minutes. I keep waking up exhausted (no surprise there) and it makes me take more naps throughout the day, but I guess if you're looking from the knee's aspect, it'd rather have me constantly moving throughout 24 hours rather than allow my body to get a full night of rest and let it stiffen up!
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline IHMK

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Re: Declaring war on arthrofibrosis
« Reply #4 on: December 22, 2013, 05:21:50 PM »
Fingers crossed that you can get the CPM. Is there a nice way to threaten your OS' office?  :D

Have you read the posts by Laurie on Kneeguru?

If you have a smart phone, look for a goniometer app if you want to measure ROM at home. That is great fun.

Keep up the great work!
My knee story: http://www.ihurtmyknee.org

28 March 2013: tore right ACL (also meniscus tear, MCL tear ["Unhappy Triad"!!], tibial plateau fracture & condylar bruise)
28 June 2013: surgery to reconstruct ACL (allograft)

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #5 on: December 23, 2013, 07:32:28 PM »
IHMK, I have! I've perused through so much of the AF topics and threads on here. It amazes me how we can all be dealing with the same problem (way too much scarring), but this truly is an individual condition. No one protocol fits every single person.

And also on a bright note, I'm getting my CPM today! I called into the office again this morning. The secretary was incredibly snappy and full of attitude when I told her that it's always the OS office and not the PT office that orders CPMs and could she please just try to find out how to get one. Lo and behold, I got a call an hour later from an ortho supplier to confirm an order for the CPM! The lady on the other end was refreshingly very nice and was calling to double check because my surgeon "normally only ever orders cooling machines from us" and it's done "in advance to make sure it's in place by the time the surgery is finished." It drives me NUTS that all the secretary had to do was to call the same place she's been calling for YEARS to order cooling machines that she's requested for multiple times.

Anyway, I'm glad to have gotten that sorted out. Still waiting back on a phone call from my surgeon to find out what happened during surgery and from the nurse to see what to do about the tight sutures!
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #6 on: December 25, 2013, 05:13:27 AM »
Day #5 and things are looking good!

I had a PT session yesterday and felt really good after-- so good that I could ditch my crutches and walk around for the rest of the day! Albeit, I didn't do much walking since I'm still trying to stay off my feet as much possible, but it was nice to feel strong enough to be up and around. However, I'm still staying partial weight bearing for at least the end of this week just to give my knee a break.

I also got an email from my therapist this morning, as I don't see her again until Thursday. The main thing is that everything right now is done within comfort. Here's our plan for now:
- icing and elevating knee at least 3x/day (I do this a lot more)
- ankle pumps and glute sets, quad and ham sets as able
- patella mobes
- calf stretches at least 2-3x/day (I have a track record of having major calf tightness)
- CPM when not doing the above, start 0-80 and increase as comfortable

I'm really excited to see how much the swelling has gone down! And historically, bruises come out strong days 4-5, but I still have really minimal bruising. While there's definitely still swelling, the patella is gliding so well (it hasn't felt this smooth since before I ever injured the knee) and I can increase the amount of movement it has from day to day.

Still no contact from my surgeon which is a major bummer. I'm guessing I'm just going to have to wait until Friday when I see him for my post-op. I originally was going to push for cortisone injections at 1 and 6 weeks post-op as I've had this done after my third surgery and felt that it helped, but I'm not quite sure I even need it at this point! It would be a nice cushion to have as a precautionary measure, but I've already had three cortisone injections earlier this year. Even if I were to take AF out of the equation, I still had/have a lot going on with my knee and as I've been told that too much cortisone can soften other tissues, I'd like to leave that for a last resort.

Anyway, just wanted to check in and give the good report. Merry Christmas!
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #7 on: December 27, 2013, 11:11:18 PM »
Post-op day #8!

Overall, things still are progressing well, although I did have a minor set back yesterday. Up until yesterday, I've literally spent every waking moment doing something for the knee, whether it be simply keeping it moving, patella/patella tendon mobes, icing, or doing gentle strengthening exercises. Plus, I'm in the CPM overnight so I guess it really is 24/7 business with the knee. Anyway, yesterday I spent a few hours in an upright position and the day ended with my knee feeling tight. I woke up this morning hoping that the cpm would help calm down some of the tightness, but it was still the same. I went to PT, and we worked hard to bring down the swelling. It's still not as good as where it was, but the session definitely helped. I guess now we know that it's too early to even give myself as much as two hours off of focusing on the knee!

I also saw my surgeon today. He was really happy with how the surgery went. He said that when he got in there, all three of my compartments were full of scar. I especially had bad scarring around my patellar tendon and ACL. The reason I was having problems with extension before was because he said that around 5 degrees, the ligament was getting impinged on the notch because of all the scar. Also, I know that prior to surgery he had said he wanted to preserve the fat pad as much as possible and just debride around it, but he surprisingly found no fat pad! He thinks that the surgeon who did my first surgery completely obliterated my fat pad to get the new ACL in. And of course, my knee being as compliant as it is decided to replace the fat pad space with a ton of scar.
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #8 on: December 27, 2013, 11:30:41 PM »
Oh, and I also had synovitis in all three compartments, as well some cartilage damage on my trochlea (had this before from patella baja) and lateral articular chondral surfaces, fraying of my lateral meniscus (I've torn this thrice and had meniscectomies thrice), and a small tear in my medial meniscus. Our agreement prior to surgery was to keep everything as conservative as possible, so he "only" did the LOA/AIR.
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #9 on: January 03, 2014, 06:08:07 AM »
Post-op week #2

Everything was going smoothly... up until an hour ago. I had 0 extension in PT today, and the flexion was coming along nicely. There was still a fat pocket of swelling laterally. If that was gone, ROM would be easier to work on. We were starting to add more strengthening exercises, all within a pain free, comfortable zone, and there hadn't been any unusual heat/swelling/pain.

I think I mentioned before that weeks 2 and 3 were crucial weeks to watch for my AF. Well, out of nowhere an hour ago, my knee started swelling back up. The lateral pocket and suprapatellar pouch both swelled up to the point where I can't walk normally. It doesn't hurt, outside the fact it's making any sort of movement uncomfortable. There's no heat other than a small amount of warmth that's normal post-op (plus the synovitis).

I'm icing, elevating, compressing, and doing ankle pumps. Hopefully, this'll go away tomorrow, and if not, I see my PT first thing in the morning anyway so maybe she could work her magic. I don't think it's infected as the swelling is the only symptom. It's a bit puzzling, because if this is indeed AF coming back, I've never had it like this before! In the past, it's always been a lot of heat, a minimal to moderate amount of swelling, and pain that no amount of therapy, ice, motrin, or steroids could touch. Anyway, fingers crossed that this is some weird one off thing and not the AF. And recovery was going so well....
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #10 on: January 10, 2014, 03:18:41 AM »
Post-op week #3

The weird swelling from last week is going down. It was crazy, but my knee blew up to 3-4 times its size! I switched from ibuprofen to naprosyn, which seems to doing its job a lot better for me.

Oddly enough, the swelling didn't bring about any weird pains with it, but now that it's going away, I've been developing more pain. The area up to 3-4 inches above my patella is constantly sore/achy, more so when I wake up in the morning. It's bad enough to the point where my knee keeps wanting to give out when I walk (especially on a downward slope) because contracting my quads exacerbates the soreness. I thought it was soreness related to quad sets at first, but even with taking out the quad sets, it's been getting worse.

I'm also starting to experience the same pains I had before this surgery as well... lots of medial and lateral tenderness, and both superficial and "deeper" feeling pain laterally. I don't think it's directly AF related. I've had injuries to other structures that came about separately from the AF. My surgeon said that there was nothing too significant when he did the scope, so my PT and I are confused as to why I'm experiencing these pains again.

In terms of what I'm actually doing in therapy: still lots of patella and patellar tendon mobes and eccentric hamstring curls. We laid off on quad sets for a week-- historically if I do quad sets when there's too much swelling, my knee will flare up even more no matter how gently I contract. We just added them back in today, but we distracted the knee while doing them. We also did some mini squats today (body weight only, no gravity resistance).

I was originally due back to see my surgeon in two weeks for a standard follow up, but I'm seeing him early next week instead.
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #11 on: January 15, 2014, 06:39:35 PM »
Post-op week #4

I can't believe it's already been a month!! Well, almost. Tomorrow will make exactly four weeks since my last surgery.

I saw my surgeon yesterday. He commented that he'd only ever seen one other person scar as much as I did! We drained off about 45 cc's of (red) fluid. I can't imagine how much we would've gotten out if I had been able to go in when my knee blew up two weeks ago, considering that my knee wasn't anywhere near as swollen yesterday as it was then! I also got a cortisone injection after drawing the fluid out, which makes that my third cortisone in the past year. I was unable to do an SLR or seated extensions prior to the injection due to bad pain in the lower part of my quads and under my kneecap, and was able to do both (albeit struggling) immediately after the injection. The knee giving out because of quads inhibition is also almost completely gone  :)

My surgeon isn't so much concerned about strength yet. He says 4 weeks is still pretty early out for me and he'd rather just have the main focus be gaining more and maintaining motion. He's pleased with my full extension and commented that flexion should also be easier now that we've gotten the fluid out. I go back to see him in a month given everything goes smoothly, earlier if I have something come up (knock on wood it doesn't).
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline IHMK

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Re: Declaring war on arthrofibrosis
« Reply #12 on: January 17, 2014, 06:25:11 PM »
I'm glad to see this update. I do hope everything goes smoothly and you will see your OS in a month as scheduled. Do you still use the CPMM or are you past that?
My knee story: http://www.ihurtmyknee.org

28 March 2013: tore right ACL (also meniscus tear, MCL tear ["Unhappy Triad"!!], tibial plateau fracture & condylar bruise)
28 June 2013: surgery to reconstruct ACL (allograft)

Offline rbexc

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Re: Declaring war on arthrofibrosis
« Reply #13 on: January 21, 2014, 02:54:30 PM »
Post-op week #5

IHMK-- I discontinued the CPM at around 2.5 weeks out. I was using it primarily to prevent my knee from getting stiff overnight, and the stiffness started to go away around then. I didn't max out on the CPM ROM (-5 to 120), but my surgeon, PT, and I preferred that I work on motion separate from being in the machine.

Otherwise, things are still going pretty well. The deeper lateral pain is gone (thanks, cortisone). There's still a huge amount of tenderness medially and from time to time spots around my scope holes will throb a bit, but nothing big that we can't try to solve in therapy. I also still have a fair degree of aching and soreness in the suprapatellar pouch when I fire the quads, but not so much that it's preventing me from doing exercises anymore. My surgeon said he still wants the focus to be on motion, but my PT refuses to let my quads waste away any further, and personally, I agree with her!

Oh, and I had been on steady NSAIDs since surgery but I also had to discontinue those yesterday. They started causing GI issues, and my GP told me I should stop taking them. Since there isn't much swelling at all anymore (I can feel the sides of my patella!!), I'm not too worried about discontinuing them. So for now, I'm still icing and elevating as much as I can.

And on a bit of a random note, I also wanted to include that doing Graston in PT has been probably the most beneficial for me, both pre-op anf post-op!
'12-'13
1 ACLr, pt L/M meniscect
2 L meniscect, synovectomy, caps release, LOA+MUA, notchplsty, chondroplsty, scrw trim
3 pt L/M menisc., ACL+chondral debridement, LOA, caps+lat release, scar rev
4 screw rmvd
5 LOA, AIR

'16
6 ACL revision, partial med+lat menisc.
7 LOA, part lat menisc.

Offline IHMK

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Re: Declaring war on arthrofibrosis
« Reply #14 on: January 21, 2014, 06:44:23 PM »
This all sounds very good indeed!  I'm glad there is nothing particularly worrisome going on with you.

Ahh, Graston… Bane and love of my life! So glad it's proving helpful for you!

Keep the good news coming :)
My knee story: http://www.ihurtmyknee.org

28 March 2013: tore right ACL (also meniscus tear, MCL tear ["Unhappy Triad"!!], tibial plateau fracture & condylar bruise)
28 June 2013: surgery to reconstruct ACL (allograft)