Re: Nikki's Post-Op Diary for DFO/Tibial Plateau ACI - 5/18/09 *UPDATE 01/02/12*

[hwaters34]

Hi Nikki-

I just found your post-- and I just had ACI and TTO on 5/18/10 by Dr. Minas!  LOL!  Will be reading all your posts.

Heather

[ArielF]

Welcome Heather,

Congratulations!  Dr Minas rocks.  There are a few of Dr Minas patients here. 

Ariel

[nikkiluv]

Hi Heather!

Welcome! Sorry you found my diary (clearly it's only because you were planning/had to have surgery) but how cool that yours was exactly one year after mine!

Hopefully you'll find a lot of information on here that will be helpful for you as you progress through your rehab and recovery. It's definitely a long and challenging road, and although my knee may not be 100% like it was before I ever had any knee injuries, it definitely feels 200% better than my pre-op state. So, I'd definitely go through everything I went through in the last year, even if I knew my outcome would be my current status (some pain with over exertion or standing on my feet for awhile, but I also had an enormous tibial plateau defect and the tibial plateau is a challenging area with the amount of weightbearing/stress it takes). Hopefully that will give you some encouragement in the next few weeks.

If you have any questions, comments, concerns, totally feel free to post on here, or also directly email me. I do try to check the board as much as I can and update when possible, but being in an accelerated BSN for nursing school keeps me extremely busy! So email is best if you want or need a quicker reply

I wish you the best of luck in your recovery. If you totally stick to the protocol and don't do anything crazy you should hopefully have a smooth recovery Again, definitely get in touch if you have any questions or anything! Dr. Minas is an AMAZING doctor and I'm so grateful to be under his care. I totally trust him with my knee!

Nicole

[nikkiluv]

Hey everyone!

Well I can't believe it's been over a year since the last time I posted on here. It's been quite the road in the last year, some good, some bad. But, I figured I needed to update my fellow KneeGeeks, and ask for comments, thoughts, support, etc. on my current situation. The good news is that I graduated from Duke with my BSN in May, and passed the NCLEX, so I am officially licensed and an RN now! Feels SO good to say that. Despite not having a job at the moment, I'm kind of enjoying the time off from studying and working, especially since it's summer (and since I was in an accelerated BSN program it's 4 semesters straight through, which means I missed out on summer last year).

SO, I was supposed to go back for an 18-month post-op appointment back in November 2010, to re-assess my condition from my 1-year post-op appointment which was in May 2010. If you don't remember (and don't want to go back to read it) I had a right knee lateral tibial plateau ACI with a distal femoral osteotomy. The osteotomy has fixed my alignment issue, and has held up great with no issues, however the ACI was kind of a different story. I had still had some pain at my 1-year post-op, but nowhere near as bad as I was prior to surgery. I had an MRI, where it was diagnosed that my ACI defect had filled in about 2/3 with cartilage, and about 1/3 was still left to be filled. Dr. Minas wasn't thrilled with these results, but had hope that my cartilage would continue to regenerate, since my defect was pretty much my entire tibial plateau (20x25mm). There was also some edema in my tibia, underneath the cartilage within the bone. Again, not happy that it was still there (since it was present prior to my surgery), but he said it was less so at least that was good I guess. I had also been having this popping/clicking issue that caused my joint to shift out of place (the only way I can describe it), where when it did the click/pop you could literally see my lower leg move laterally and the back really quick. Obviously, not good, however this was attributed to a small cartilage overgrowth in one area. No big deal, right? So at this point Dr. Minas recommended the 18-month post-op appointment to re-check on all these issues. He recommended he may do an abrasion to help stimulate cartilage growth, and shave down the cartilage bump, but it would only need to be another scope.

UPDATE
Well, turns out that my 18 month post-op appointment turned into a 20-month post-op appointment, and actually occurred in January 2011. They had some scheduling issues back in November and had to cancel me, etc. At this point since my May 2010 appointment, my knee had become slightly more painful on a more consistent basis, but I also attributed it to doing more "physical" things, such as being on my feet for 12 hour nursing clinicals at the hospital (which, despite being cleared from wearing my unloader brace I always wore my unloader with clinical, because it scared me not to). So, my January appointment. I had an MRI and then my office appointment with Dr. Minas, of course keeping in mind everything that we discussed at my 1 year appointment (i.e. potential for another scope, etc). Honestly, after going through the whole ACI surgery/rehab, I really thought nothing could be worse than that. Well, I was wrong. Finding out your ACI failed, there's absolutely no graft left, your tibia has about 5mm worth of edema in the bone, and the now occasional popping/clicking/joint shifting that was occurring (which is now constant and can be performed on command) is most likely a destroyed lateral meniscus, was one of the biggest blows I could've been dealt. ACI was supposed to be the "end all be all, this was supposed to be my final surgery, this was supposed to fix my knee...I moved to NC, started nursing school, it was all supposed to be a new beginning" was all I could think. Then statistics start to be thrown around that only 6-8% of ACIs fail, and you wonder how you can be in that category (of course always knowing that with surgery things could not work out, but you never think it will be you), how 92-94 people out of 100 have good results from ACI, and only 6-8 people don't have results and completely fail, and YOU are in that category of failing. All I could do at this point was burst into tears, with Dr. Minas there and my dad who came for the appointment. I felt like I was punched in the stomach.

Of course after I composed myself came the "so, what does this all mean now?" Realistically, I knew the answer: another surgery. What was presented to me was a lateral tibial plateau/lateral meniscus fresh osteoarticular allograft transplant, along with removal of my femoral osteotomy plate/screws (since he would already be in there and there's no reason for me to keep it in there because I no longer need it). The surgery would include taking approximately 5mm deep of my lateral tibial plateau, along with the lateral meniscus, and replacing them with fresh cadaver graft. I think my jaw hit the floor. All I could think of was "cutting part of my bone off and replacing it?!?" Rehab includes a few day stay in the hospital, a CPM, etc. I was told it will be similar to the ACI rehab, but the time frame moves along quicker than ACI does because there isn't the fragile cartilage cells to worry about. Unfortunately, at this point, this is really my only option. I asked how long I had before my knee would pretty much completely "fall apart," as I put it. He said about a year, to a year and a half. So, another open knee surgery (#2 open, #6 total), another long rehab...just another everything that of course I don't really want to go through. So, prior to leaving his office, they took x-rays with measurement markers to get the measurements on how large my tibia is and such. These measurements will go into a fresh tissue database, to be matched with cadavers. When they find a match, I will get a call that they found one.

I received insurance approval a couple of months ago, so now it really just is a waiting game. At first I thought insurance approval was going to be like it was for ACI, where you have to jump through hoops, etc. (I didn't but I know several others here have). However, I was "pleased" to be informed/told that "these pretty much always get approved since insurance companies know you have to have a really bad knee to need this." Oh, fabulous to hear. Also, the thing with this surgery is it can't be "scheduled" and can't be planned for. Unfortunately, I'm at the mercy of when they find a size match for me in the tissue bank. The good thing is that it's based on size, not like organs, where it's based on need or number on a list. So, I could get a call anytime. When I get a call, they'll want to do the surgery as soon as possible, since it's a fresh graft, and with each day that passes the tissue becomes less viable. So, surgery will happen within 7 days of getting a call saying that I have a match, and accepting it.

So, unfortunately, this update isn't the "happy, my knee is awesome, everything is great!" update that I would be hoping to post at this point. I have been wanting to post an update for awhile now, well really since January when I found out, but I think part of it was severely denial that I am in this situation and didn't want to accept it (definitely not because I had forgotten about all of the help and support I have received from this board!). It would be great to hear how some of the "regulars" who had followed my story/posting are doing. I would also appreciate it if anyone knew where I could post to get information/stories about osteoarticular allograft transplant. I could only find where to post about OATS, which I know is not the same thing. Any help, advice, and certainly support (since I know so many people on here have experienced the same frustration/denial I currently am in knowing that your knee saga isn't finished), is so very much appreciated.

Thanks guys

Nicole

[petite knee]

Hi Nicole,
I'm so sorry to hear about your graft failure, but thanks so much for your update. I'm in a situation similar to yours, I'm 26, and am scheduled for ACi with TTO and tibial valgus osteotomy with Dr. Minas in September. Your post-op diary from 2 years ago has been really interesting and informative for me to read. I guess one option that you might consider, though I know the Boston docs are all against it, is partial knee replacement (osteoarticular allograft transplant is not your only option). I've seen 4 OS about my knee and the 3 that are at BWH all recommended ACI, but Dr. Noyes in Ohio recommended knee replacement. I know it seems like a scary final decision but from what I've read and been told by patients and docs (I'm a med student in Boston), the recovery is fast and impressive, people are able to return to activities of daily life and get great range of motion, and patients are very happy (apparently knee replacement and cataracts surgery are the surgeries that patients rate highest in terms of post-op outcome). They last for about 10-20 years but I'm under the impression that by then the technology will be light years ahead and we won't need to worry about having more than 2 in our lifetimes. It's my plan B after ACI. Anyway, good luck and keep us updated!

[nikkiluv]

Hey petite knee,

Sorry I haven't seen your post until now, several months later (and a new year at that!). I hope this finds you well on the way of recovery post-ACI and TTO, and that everything went well!

As you previously mentioned, I'm sure I could find an orthopedic surgeon who would automatically suggest a partial knee replacement given the shape that my knee is in. I also know that there are tons of individuals out there who are happy with their artificial knees, and their recovery was a lot faster than many of the other recoveries that come with other surgical options. However, being so young it's an option that I want to delay for as long as I possibly can, and wouldn't consider now. I'm sure down the road technology will become even better than it is now, and that artificial knees will last even longer than they currently do. I just look at it like I want to exhaust all possible options before ever thinking about the "terminal" option. Plus, I was told that although an osteoarticular allograft transplant is (although still long and detailed) a less lengthy, less restrictive surgery than the ACI/DFO I went through (one of the "positives" I'm trying to look at in this whole thing!).

The "good news" is that over the last couple of months, it seems that either my body is becoming used to the pain or in fact my muscles are continuing to become stronger, because my knee seems less painful than it has been. This is a major thing, considering I started an RN job that keeps me on my feet for 8 hours/day, 5 consecutive days a week. The first few weeks of my job were rough, my knee wasn't used to being put through that much in awhile since I graduated from school in May and hadn't had a job or nursing clinical in several months. But, after 3-4 weeks I'd say the pain/discomfort definitely decreased. I'm thinking of possibly asking Dr. Minas if I could try and get a custom unloader. My current unloader brace is a "OTS custom" one in that it's already made and sized, but can be "customed" with the straps, etc. to fit you a bit better than something completely OTS. However, I just think a custom one would offer me the greatest comfort and greatest fit with a laser sketch of my leg, and therefore I'd be more apt to wear it more often than the one I currently have. Then thoughts cross my mind like it may be pointless to get a custom brace now when I have another surgery ahead, however I know that if I wait until after surgery it'll be awhile before all the swelling is decreased/completely gone for me to even remotely take accurate measurements for a custom brace. (Maybe I just think myself in circles too much, lol). Ultimately, I know that despite my knee "feeling" better, I know the damage is still done and it can't stay that way, and surgery is still in my future, and I'm still waiting for a call for a match.

I'm glad that my journal has been able to help other people who have had similar surgeries to mine. I always had hope that I'd have a "happy ending," (as we are all ultimately looking for), but I've always felt it to be important to keep up with my journey and continue to write about the struggles/failures that have happened along my road, as we unfortunately know they're always a possibility. But, just keeping my head up and taking things day by day, as I am surely not going to let this ruin my life and/or defeat me! At least this board has definitely showed me I'm not alone with my knee saga

Well I'd love to hear how your surgery went and how your recovery is going! Keep me updated and keep in touch!

Nicole