DIARIES => Post-op diaries (50-100 posts) => Topic started by: sune on October 19, 2012, 10:44:33 AM

Title: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 19, 2012, 10:44:33 AM
Just wanted to start up my post op diary today, the day after my MACI and fulkerson osteomy on left knee. 3 cartilage lesions were grafted, two on the patella and one in the trochlea.
Things went well, and I am still at the hospital and feeling fine. Will be going home in a few hours - which is nice as today is my birthday.... Going to be pwb over the next 6 weeks.
My motivation for keeping a diary is to help others contemplating similar surgery, and to document my recovery for myself, making it easier to follow the progress. I'll be back soon with more.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Forevergimpy on October 19, 2012, 11:33:39 AM
Happy birthday! I hope your trip home is uneventful and you can get comfortable enough to enoy a bit of your birthday. Thanks for the diary - it really does help to hear how others are doing.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 20, 2012, 08:40:53 AM
Thanks, forevergimpy. I got home and had a bit of celebration. I am doing great actually, not in much pain at all. Nothing like I feared. I am on contalgen, 2 x 10mg a day, so not so much I think. I'll start stepping down monday or tuesday.
At the moment I am confused about how much weight I am allowed to put on - one surgeon and one physio said I could put up to half the normal weighbearing load on it when stretched, the other surgeon and physic (all 4 part of the team) talked about "shadow loading" and up to about 10kg. Maybe they mean more or less the same, but I am phoning on monday to make sure what's best for my knee.
I realized I posted in the wrong thread... should have been <50 posts. Maybe it'll get moved.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 22, 2012, 09:34:21 AM
Day 4:

Still feeling great  ;D ! Regarding pain medication, I am now down to 2×10 mg of Contalgin daily, in addition to NSAIDs, and pain is really not bad at all.  I plan to take my last dose of Contalgin tomorrow morning, and I'd like to stop with the NSAIDs as well, as I know they can be hard on my stomach. I am doing exercises 2 to 3 times a day,  focused mainly at activating my inner quad and strengthening adductor, abductor and buttock muscles.  the exercises do aggravate pain  under the kneecaps slightly, but I guess this is unavoidable. I'm not sure whether it would be better to stick to two times exercising a day, as the physiotherapist told me to the day after my surgery, or if it would be better to do three if I'm able to. I'm calling them anyway today in order to ask about the weight-bearing question mentioned in my previous post, so I will ask about the exercises as well.
 my knee is somewhat swollen, but this was of course expected. There is also some mis-coloration of the shin, but it's not bad. My angle is a bit swollen also.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 23, 2012, 02:02:19 PM
Day 5:
still doing great! It seems that the swelling is already receding, although my left knee is still significantly larger than the right. I have stepped down the pain medication dose, and this morning, I took my last Contalgin (I hope).
My sleep is not as good as before, this is not so surprising, given that I'm sleeping with the brace (and being extremely inactive during the day). That means I'm pretty much restricted to lying on the back — I guess it must be kind of the same as being pregnant. I'm also starting to get bored… I've been watching some shows on iTunes and Netflix, but I am tiring of that also I guess I am looking for some inspiration regarding good movies and TV shows. I've also begun working a little bit. I'm trained as a theoretical physicist and work in neuroscience research. That means I'm able to do a lot from home, even lying down, such as reading papers, writing Matlab programs, do calculations etc. but I think I'm still mentally affected by the surgery/medication, I don't have the same energy and ability to focus just yet. Besides, I also wanted to have a bit of "vacation" out of these six weeks in a brace :D.
I'm curious how my right knee will tackle these weeks. Already before the surgery, it was starting to act up, and I did have days where there was more pain from the right than from the left. It has never been diagnosed with anything, so hopefully it is just overloading? My surgeon is aware of it and will do an MRI in due time.
My theory at the moment is that the left knee injury has been caused by trauma in my childhood. I distinctly remember falling very hard directly on the patella , with severe knee pain. Subsequently, I have always had problems sitting prolonged periods with bent knee,, and my left knee has always been my bad knee. My real problem then started about 10 years ago, at age 28, when my knee suddenly swelled after doing about an hour on a stationary bike. It turned out that a big chunk of cartilage was detached from the patella, which they removed with arthroscopy. Since then, I've not been able to do much sports, and since the most recent arthroscopy in 2009, it's been worse, and I've not been able to do more than 1 to 2 km of walking. Before this, I've always been leading a very active life, with lots of sports.
My greatest wish for the surgery therefore is that it will allow me to do more or less unlimited walking, and also some form of aerobic exercise. I hope to be able to some bicycling, 2 to 3 times a week, 30 minutes at a time would be perfect. I don't think these are unrealistic goals, and I will work hard for them. Reaching them would make me extremely happy.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 24, 2012, 03:07:47 PM
Day 6:

Last morning, I thought I took my last Contalgin… However, I did have some pain during the night and in the morning… I would say five on a scale from 0 to 10, where zero is no pain and 10 unbearable pain. I was debating whether to stick to my original plan, but in the end, I decided to cut a pill in half and continue to take 2 x 5 mg a day for a few days. I don't want to be scared completely away from doing my exercises etc. I'm still doing exercises twice a day, including a few straight leg rises lying down. That one is pretty tough though, hurting under the kneecap.

My lower leg and foot are swollen, and there's also some misscoloration of my foot and shin. I have read about others experiencing the same thing, and I was also warned about it by the nurse, so it's not something I worry about. My thigh muscles are already shrinking… After just one week barely. It's really kind of shocking, even though I knew this was going to be the case, but it's quite different to experience it yourself. I'm already hating the look of my inward curving thighs.

One thing I'm noticing when writing these words is that somehow, all the things happening to me seem less scary than when I was reading about it in others posts. Maybe it's because I'm doing relatively good, but I also think that often the fear of something bad is much worse than the actual thing itself. Nevertheless, I still feel that reading other people's diaries and posts in this forum helped prepare me, and also helped me making up my mind about whether to go for the surgery or not.

Does anybody have any good advice on nutrition to support healing? I feel that I eat quite healthy generally, and the only nutritional supplements I take is fish oil and vitamin D. I know that some people will recommend glucosamine, but last time I checked, there doesn't seem to be any documented effects.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Room 101 on October 24, 2012, 06:13:05 PM
Hi, Sune - Glad you are doing so well!  Congrats on that  :D  -- It's a long haul but it is outstanding when all goes smoothly!  Keep up the good stuff!  I am 7 weeks today post AMZ and patella ACI.  I am certainly able to be more "out and about" now and went back to work on day 7 (my hubby and I work together, so he drove).  Work kept me sane I think as I also tire of tv and movies... and I seemed to always fall asleep upon trying to read, haha!

just wanted to give you props on a successful start to to your rehab!!

Room 101
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 25, 2012, 07:45:37 AM
Hi room 101.

Thanks for stopping by  :D! I have previously been reading in your diary. I'm really impressed that you went back to work on day seven… I couldn't imagine doing that. I mean, I have to have my leg somewhat high, so I wouldn't be able to sit on a chair the whole day. But I've also begun working from the couch… Otherwise, I think I would go crazy also. It's interesting how your perspective changes a bit when your normal life is put on hold. Work for example just takes up so much of your time, energy and focus. But somehow when you're away from it, it seems strange that it should be so important and that it should be such a big part of your life — and then you start wondering about your priorities in life etc. On the other hand  I wouldn't know what else to do… And I like my job. I guess it's more a feeling like, is that really all?
Anyway, I'm glad to hear that you are also doing well, and I hope it continues. I'll be following your progress with interests!
Sune  8)
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 25, 2012, 03:24:43 PM
Day 7:

One week postop anniversary! Five more to go, and I'm ready to go back to the office… :-)

Overall, things are going well. I'm taking very little pain medication, and I hope to stop altogether as of tomorrow. Pain is worst in the morning when I stand up immediately after getting out of my bed, and sitting up eating breakfast. It's not unbearable at all, just uncomfortable. Then I go sit on the couch for half an hour, and after that I'm fine for the rest of the day. I walk around a bit on my crutches with no problems at all. Some of my exercises are a bit painful, especially the one where I have to sit on a chair and press my heel down on the ground while trying to activate my inner quad — that gives me some sharp pains under the kneecap. I try to to avoid the sharp pains as best as I can while still activating the quad. Another thing that causes minor pain is while releasing the tension after activating the quad in stretched leg position… Especially after the first few repetitions. But given the kind of intervention I've been through, I'm pretty sure pain during rehabilitation is unavoidable. But it's definitely on a level that I can manage.

I'm also very sore on the upper thigh/groin area, where I got the nerve block injections. It doesn't bother me much except when I put a little bit of pressure on it… Ouch  :o! I think and hope that is normal. Anybody else had any experiences like that?

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 27, 2012, 01:22:13 PM
Days 8 and 9

I'm officially off pain medication  :). Pain is not bad at all, worst time for the knee area pains is getting out of bed in the morning, as mentioned earlier. However, it quickly improves. During the night my knee area also aches somewhat, which certainly deteriorates the quality of my sleep. Apart from that, I have pain/aches from all kinds of other places in the body… The worst place is the back of my right (the other leg) thigh (hamstrings probably)… Ouch . It's not constant, but during activation of those muscles. Also my hip/groin area is somewhat sore, and lower back. I guess it must be from altered walking patterns, and also from lying down so much.

The bruising is still not going down, and the swelling is not changing much either. The back of my leg looks pretty beaten up.

I've taken a slightly different strategy with my exercises. Since the pain usually increases in the course of the exercises, I decided to break it up into more but shorter sessions. I'll try to listen a lot to the pain signals. I think a bit of pain is unavoidable, but I will try to keep it at a minimum, and then be very flexible about the amount of exercising I have to do. This is a challenge to me, because I am very competitive, so if I set a goal of having to do a certain number of repetitions, I tend to do that regardless of the amount of pain it triggers. That's stupid of course. Like someone else pointed out, this journey is really an opportunity to learn and grow. In my case, patience and flexibility of mind are some of the characteristics I hope to further improve.

I've already begun worrying about my good knee, the right one. Already before surgery, there were times when I had more pain from that than from the other after activity. I can also fill in a bit these days. I guess it's my impatience… I just can't wait being able to lead a more active life, and I fear that my right knee will very soon become a bottleneck for that. And then I might be facing more surgery… Postponing my active life dreams with a year at least, given that my surgeon will not even talk about the other knee before then. This is of course taking the sorrows in advance, and perhaps it will improve somewhat when I will be compensating less with it. Regardless, I don't think its condition is as bad as the left knee, so hopefully in the case of any intervention, it will be a much smaller one. Still…

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: cdubb on October 28, 2012, 05:40:58 AM
Hi Sune, Thought I'd pop in on your thread to see how you're doing.  You seem to be doing pretty well at this stage.  I have no idea what the pain medication that you are on is though.   My doc used the Oxycontin 10 mg for the long acting narcotic 2 x's day and then Norco 7.5/325 mg 1-2 every 4-6 hours as the short acting narcotic.  I started reducing the narcotics from the very consistent dosing of the Oxy every 12 and 2 Norco every 4 at about day 3-4, but took me until about 3 weeks out to be done.  Although, there certainly are days throughout the rehab where you'll still need one here and there.  I still randomly will take one if it is a particularly bad knee day.

Don't stress about the right knee you said, it's way too early.  I also spaced mine out 13 months apart and in hindsight, that may have been a bit close.  I think 18-24 months may have been better....although, I do have to say that I am glad that they are both done and even though I still have quite a fair amount of symptoms, they are better than pre-op and now I know that my activity is really just based on my tolerance with no formal restrictions.  I haven't really tested that "freedom" out so to speak being only 3 weeks out of the scopes, but over the next few months, I'll see what I can do!

I also see Room 101 has popped in on here...she is an excellent resource as well....I know her personally!
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 29, 2012, 11:34:36 AM
Days 10 and 11:
In the last couple of days, I feel that my pain levels have increased slightly. I'm not sure why, as I haven't changed any of my routines or increased intensity of my exercises. Perhaps it's part of the normal healing process. I don't know if it could be because of quitting the pain medication Thursday, but it seems unlikely that its effect could have lasted that long. I'm also wondering whether it could be because I have started putting more weight on the operated knee without being conscious about it? Different people have given me different directions regarding weight-bearing, as mentioned earlier, one surgeon said partial weight-bearing up to half of my weight, whereas the other surgeon has said "shadow loading", which by one physiotherapist was interpreted as up to approximately 10 kg. So apparently, they don't agree about the instructions, and of course, they should have cleared that out with one another before instructing me. In the end, I agreed with the nurse that I should be weight-bearing as tolerates, which I feel like I have been doing. Anyway, I hope everything in there is this should be, but I'll try to take a bit weight off my leg and see if that makes a difference.
I'm starting to look forward to my first postop appointment the coming Monday! I'll see the physiotherapist and the surgeon. Hopefully, they'll be satisfied with my progress.

Otherwise, not much news to document. I've started feeling a bit of pain around the tibial tuberosity, which was moved as part of the procedure. I'm also wondering when the bruising will start to go down… It looks terrible.
I will probably begin to decrease the frequency of my updates, so I hopefully have some more to tell.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 29, 2012, 11:35:55 AM
Dear cdubb,

Great seeing you in here, thanks for stopping by!

The pain medication I was given is morphine… The name was just a brand name. In Denmark, the rule is to try morphine first, and only use oxycodone if that doesn't work, or have severe side effects. I was slightly tempted yesterday to go back to taking half a pill twice a day, corresponding to 5 mg twice a day, because my pain increased slightly. However, I didn't do it since the pain wasn't unbearable, more annoying and perhaps making me a bit grumpy :) I like to avoid strong medication as I can, but of course I'm not fanatic about it. I still take nonprescription pain medication a couple times a day.

Best wishes for continued recovery to you! Keep me updated on your progress.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: randomlife on October 30, 2012, 02:32:06 AM
Hi sune,

Thought I'd drop in and say hi! Found your post-op diary, and it sounds like you're progressing steadily. Nicely done! I think you're exactly one month behind me; I had surgery on September 18. I'm impressed that you've weaned off the pain medicine so early! I'm still taking one narcotic pain pill when I go to bed at night, but I take nothing else during the day. It took me a while to wean down to one pill, but I didn't worry too much because pain doesn't help you heal. At least that's what I told myself.

I also wanted to mention I had terrible bruising down my shin well below where the osteotomy was and behind my knee. The bruising on my shin was painful, too. It took a long time (about 5 weeks) before all the bruising disappeared. So hopefully, you don't have to worry just yet. My shin still hurts when I rub it, but it's getting better. I think one thing that really helped my swelling was wearing the TED stocking all the time for the first several weeks. It went from toe to thigh, and I hated it, but I do think it was quite helpful.

You asked about nutritional supplements... I think I have a generally healthy diet, too, but I have changed it a little bit since surgery. The biggest change is that I've nearly doubled the amount of protein that I normally eat. I've been told this will be important for re-building my muscles. I am also taking a daily calcium supplement with vitamin D because I don't eat very much dairy, and I want to make sure the bone has what it needs to heal. The other thing that I'm taking is a hyaluronan supplement. I have no clue if it works or not because I have been taking it since surgery, so I don't know the possible difference if I didn't take it. It's supposed to help with joint lubrication. I previously took a glucosamine and chondroitin supplement when I was trying to avoid surgery, but I could not tell that it made a difference at all.

At any rate, I really hope that you continue to heal and progress positively!!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 31, 2012, 10:17:29 AM
Days 12 and 13

As mentioned in my previous post, I experienced some deep, aching pains coming from somewhere deep inside my leg/knee (can't pinpoint it exactly) in the evenings. Curiously, I can provoke the exact same pain simply by bringing my toes towards my shin when lying down, or by trying to touch my feet with my hands while sitting in the bed - i.e., no motion or activity around the knee of any significance, I would think. Perhaps that means it's not a problem of the knee joint? Yesterday, I decreased the amount of weight-bearing on the operated leg, and this pain was not quite as bad in the evening has the two previous days. Whether or not that was actually the cause is probably too early to say, based only on one day. But it does make me worry a bit, because it brings me back to the contradictory instructions I received upon waking up. One surgeon said "shadow loading", but he was also the one instructing the physiotherapist who saw me, and she said I could put up to half of my weight on the operated leg. The other surgeon had also said I could put up to half of my weight on the operated leg. I just really hope I haven't damaged anything. I don't think so, since I don't have any steady pain at all, and I don't take any strong pain medication, only over-the-counter pills (and not so much of that). But I am the worrisome type and then I also begin to worry about other things. For example, all the time I've had the impression that it would be one surgeon, A, who should be operating me, that was what I was told and that is the one I've been consulting. When I wake up, I find that it was another surgeon B who did the surgery, with A acting as an assistant. Why? I don't have any particular reason to be nervous or unhappy about that - it's just a bit odd. It's my impression that both surgeons have very good reputations, but I've mostly asked around about A, because he was the one who was supposed to operate. But I try to reason that I trust A,  (his surgical skills), I can also rely on his decision to let B do the cutting… I guess I'm just a little neurotic, and these things unsettle me a bit. I knew these worries were going to come though, but that doesn't really help much.

Regardless, my knee feels quite good. The swelling has gone significantly down. The bruising around my ankle has also diminished a bit, but not behind my knee, where it's still quite terrible. Doesn't really hurt though, just looks ugly. I have increased the intensity/number of repetitions of my exercises, and I have hardly any pain when doing it. One of the exercises though, sometimes still not provokes a mild but sharp pain, which is familiar from preop. It occurs when sitting on a chair, heel on the ground, and trying to activate my quad while pushing down my heel. I just hope that it's not a sign of failure!!!! Hopefully it will disappear once the cartilage matures and grows.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on October 31, 2012, 10:19:43 AM

thanks for stopping by! I think you're right that pain itself doesn't help you heal, and I don't think I'm fanatic about not taking pain medication. However, as long as the pain is tolerable, I prefer not taking the strong medicine due to side effects, and also because I believe that pain can be a good guide concerning exercises and activity levels in general. Concerning nutrition, I also take D vitamin, and have been thinking about calcium as well. I do get some milk and vegetables every day though, so I've been thinking that it isn't necessary, but who knows. I also tried glucosamine earlier, but couldn't detect any effects either. Sounds like you're progressing nicely also… The amount of walking, and just being able to stand on a wobble board with one leg is impressive, and it's not something I could even do preop without significant pain! Keep up the good work! I hope to progress as nicely as you.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 02, 2012, 10:22:22 AM
Two weeks:

Finally, I made the two weeks mark.

Now I can finally start seeing the bruising coming a bit down, and the swelling in my foot is gone. There's still some swelling around the knee though. One thing that continues to worry me is the rather mild, but sharp pain, that I get from below the kneecap once in a while. For example, when I try to activate my quad while sitting up and pressing down the heel in the ground, or when swinging my leg over the bedside (both with the brace on and locked to 20°… I have it on at all times). I wonder what it could be? It feels similar to the pain I would have preop when loading the leg in a bent position. Has anybody else had that experience so quickly after MACI or similar? Of course my great worry is that somehow the graft doesn't cover the lesion completely, or that it isn't attached properly, or failing in some other way… I really really hope it's none of those things, and that it's just a matter of time before it gets better....!!! In my exercises, I've tried to avoid triggering that pain, but I'm thinking maybe I should drop that particular exercise all together!?
I also have a "catching" sensation when 'walking'. It feels almost like the kneecap is maltracking, but I expect that to disappear as time goes by.
As of yesterday, I have also dropped nonprescription pain medication, because I have generally very little pain. I do my exercises, try to increase the load very gradually, and listen to my body. I feel quite all right, but it's rough having to be so immobile. I have aches in my back from lying down most of the time, and I'm just really tired of being so inactive. I feel like I'm living in a parallel universe to everybody else, even my family, feels like I'm just a passive bystander observing their lives unfold… I'm looking forward to be able to participate in daily life again! I still have some pain in my hip/groin area, especially when I sneeze or cough… I hope it's just because I'm using some muscles that are not being used so much normally…Pain also in my achilles!

My next update will probably be after my physiotherapy on Monday.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 05, 2012, 02:17:32 PM
18 days postop

Today I went for my first follow-up appointment with my OS and physiotherapist. They were both very happy with my knee, scar, bruising, swelling was fine, and control of quadriceps fine. My ROM was measured to 50°, which they were happy about (I've been locked in the brace at 20° so far). I'm supposed to increase to 90° over the next four weeks when I have my next appointment.

I was given some more exercises involving standing SLRs with a band for increased resistance, as well as passive bending of my knee to increase range of motion. I was also told to increase the number of forward SLRs lying down, and to put more weight on my operated leg when walking/standing. It turns out that I'm allowed to be weight bearing as tolerated, when the leg is straight.

I did notice my knee swelled up a little bit after doing the exercises at the physiotherapy, but it doesn't worry me, and it didn't really hurt.

I was also given a green light to shower my operated knee, although I should still use a stool. They told me to wear some kind of plaster over my scar at all times, to reduce the strain on the skin in order to improve the cosmetic outcome. I will do that, but I have to admit that cosmetics is the least of my concerns…

That's it from me for now…

Best wishes to everybody.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: randomlife on November 05, 2012, 06:13:07 PM
Congrats on the positive appointments! Sounds like you're doing great, if you're increasing activity/exercise with therapy. Showers are awesome, aren't they? Taking my first solo post-op shower was quite the milestone for me. :)

Keep up the good work!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Room 101 on November 05, 2012, 06:26:42 PM
Hi, Sune.  Work has been killing me lately, so I am delayed in getting back out here.  Sorry about that.  It seems you are still doing quite well, and that is great.  I kind of read your diary quickly, and I will go back and digest it better as well.  

I think all of what I have read below seems quite normal to be honest.  Day 10 when you mention pain increases.  I am sure you are just doing more with it, and also not taking the meds will affect that as well.  days 12 & 13, the deep pain.  I had very similar.  It felt like my shin and ankle were cramping like mad in the evenings.  It would drive me nutty but only lasted a few days.  I think it was just the osteotomy healing process.  I don't remember it from the first knee, but I think I blocked a lot of things out of my memory banks  ;D  -- My bruising also lasted a good 5-6 weeks, and there was still shadows of bruising 10-14 days ago.  I will be 9 weeks post op this Wednesday.

The kneecap rawness is totally normal.  I don't think you can expect that to go away for quite some time.  The graft has to grow and harden and spread and there will be many weird kneecap feelings.  I still get them when I do the wrong movement.  I am off crutches now and still walking very slowly but walking nonetheless  :P

The way I handle the rawness is if I can do an exercise without changing my facial expression, I do it.  If it hurts and makes me cringe, I stop and try to work on an alternative.

Happy Monday!!

Room 101  
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 07, 2012, 09:45:50 AM
Hey lk and room 101.

Thanks again for stopping by… It's always a great comfort to hear that others have had similar experiences, and that makes the journey feel less lonely :-) you don't normally just bump into people who have had ACI, so I really appreciate this forum, and how it enables us to share our experiences. I'm certain I would have had many more concerns and worries over everything happening to me during rehab (and before surgery) without KG.

Room 101, thanks for your advice. I just read your post in lk's diary — I'm simply awed by the amount of activity you were able to do after your first ACI. Wow!!  I really really wish that I can get up to that level, it's almost more than I dare to hope for! If I'll be able to walk more or less unlimited (such as 5 km frequently, and up to 10 km occasionally), and to do some aerobic exercise three times a week, such as a stationary bike or elliptical 3 x 30 minutes… I would be absolutely thrilled!!! Of course, more would be nice, but for now, these are my goals. Anyway, I hope you get back up to that level… Sounds like you've had a bit of bad luck, but I'm sure you will recover well this time also.

Best wishes to you both!!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 12, 2012, 12:07:45 PM
25 days

Today I'm slightly worried about increased kneecap pain. I think it's coming from my ROM exercises. I'm sitting on the floor with leg extended, brace on, and then I use a towel under the knee to lift my knee to a bent position, very slowly. I'm supposed to do four sets a day, each including 3 x 15 repetitions. At physiotherapy last Monday, we established that my ROM was about 50°, and therefore I was supposed to start from that and increase to 90° in four weeks. I don't think I've been able to do the full 4 sets more than one or two times, because it causes pain. Only a little bit while I do it, but then in the evening and night, I get some aches from the knee Area. Today it's worse than usual, and it's from yesterday's exercises…
So the question is, what to do?? It's the eternal dilemma, when is pain destructive, and when is it just unavoidable without being destructive? I'm currently at about 55°, and I'm wondering that perhaps I should decrease ROM - as opposed to decreasing the number of sets or repetitions. I think it's important to get the knee in motion, but it's probably a little bit too much at the moment. I already do them very slowly, so I don't think I can decrease speed any further.
Apart from that, none of the other exercises I do seem to cause any kneecap pain. When standing, I put normal weight on the operated leg, and I'm also putting weights on it when walking (with crutches and braces). The forward SLR sometimes cause quite a lot of pain, not in the knee, but in my upper thigh/groin area. I don't know if that's a side effect of the nerve block, or if it's because of the way that I use/don't use my muscles there.
I still have swelling in the knee, but bruising is almost gone now. Swelling seems to increase a bit after exercise.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Adobec on November 12, 2012, 04:06:51 PM
I enjoy reading your diary.  I had a maquet n November 6, so 6 days ago.  I'm not sure what the difference is between a fulkerson and maquet, but I assume they are similar. 

My doc put a drain in, boy did a lot of blood flow out of that thing!  As a result, I have very little pain swelling or bruising.  I was also surprised to not have a brace.  I am 50% weight bearing.  Right now, my priority is to keep the leg elevated!  I'm so bored!

Anyway, I had a microfracture to the femoral trochlea 7ish months ago.  Going into this November 6 surgery, I was convinced that the microfracture had failed and that my patellofemoral surfaces were shot.  The surgeon even told my husband that he expected the inside of my knee to look like "dog poop". Well, the microfracture had healed perfectly and there was no other damage.  My point, don't worry about your ACI.  I can say that in hindsight ;). The human body is amazing, just trust that.  I wish I'd spent less time worrying about the success of my microfracture.  Good luck with everything!!!
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: randomlife on November 12, 2012, 10:55:06 PM
Hi Sune,

Sorry to hear about your rough spot. I hope you find that soon it gets easier as you move along with the exercises. If it helps you to know, I had quite a bit of pain when I first did my heel slides (sounds exactly like the exercise you described). Of course, I'm on a different protocol because I had a different doctor who did a slightly different surgery. I was actually bending to 60 degrees in the CPM the day after surgery and then worked up to 90 degrees from there. I don't know without checking, but I think I was at 90 degrees in the CPM about 8-9 days post-op. At 10 days post-op, I started the heel slides and gradually worked those up, too. I don't recall where I started with those, but I was going over 90 before 2 weeks. There was quite a bit of discomfort behind my kneecap and pain on the medial side, but I don't think I'm any the worse for wear now. Obviously, you know your body better than anyone else, so only do what you're comfortable doing. Can you talk to your doctor so that you at least have peace of mind about what you should or should not work through where pain is concerned?

I hope you get this sorted quickly and your pain decreases!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 13, 2012, 11:19:35 AM
Hey lg and Adobec.

Thanks a lot for your comfort and reassuring words… It helps! I already knew before surgery that there was going to be days like this, and that I was going to worry, but that doesn't prevent it from happening. Anyway, pain is much better today, although it's not all the way back to what was before. I talked to the physiotherapist yesterday, and she told me to decrease the degrees and number of repetitions, so I've done that. But she also stresses that it is important to do the heel slides ( yeah, I think that's what they are lg), so as to prevent things sticking together inside the knee. If the knee didn't calm down, she advised me to talk to the OS, as she wasn't sure to what extent I should ignore the pain. However, I distinctly remember the OS saying last week, that he didn't think I could use pain as a parameter for guiding my exercises, because they basically did so much "remodeling" in there during surgery, and cut nerves. Also, in the theater, they already tested that my knee was able to get bent without damaging the implants. And now they're so supposed to be more tight. And I haven't done anything else then bending my knee very slowly, and otherwise doing exercises that haven't previously caused any problems. One other thing I did, which may have contributed to the pain, was that I went on a long trip with my family. No walking, just a long period of time without having my leg elevated.
Thanks again for cheering me up :-)
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 19, 2012, 11:32:18 AM
32 days

In my previous update, I was a bit worried about my heel slides. I did not have significant pain during the exercises, but later during the day and evening, I would develop a kind of burning sensation in the kneecap area, and the knee would feel slightly warmer than the other knee. The strange thing is that there would be several hours (ca 5) between doing the exercises and the pain appearing… Thus I cannot be completely sure that it's the heel slides causing it, but I believe that to be the case, as the pain seems to correlate pretty well with how much I do those particular exercises. Of course it could also just be general overloading which causes an inflammatory response. Anyway, I spoke to my PT and OS about it, and my OS said to skip or decrease the number and intensity of the heel slides. He was not at all concerned that I was damaging my knee, but he did mention that it was the sort of pattern that could potentially lead to a chronic pain condition over an extended period of time. So now I have brought down the ROM to 30° during the heel slides, and I only do 3 x 3 repetitions four times a day. So hopefully, I can avoid that pain. Of course, I still need something to worry about, so now I am slightly concerned that the limited ROM may lead to tethering of scar tissue etc.… I find it very difficult to find the proper balance between pain and progress. I think I can handle the pain, but not if I'm worried the same time about damaging the grafts.
I have started putting more weight on my leg as I walk around with the brace and crutches. That feels fine. Also, my bruising is all but gone, and the swelling is very slowly receding also. It's located only in the knee area. Otherwise, there's nothing new to report. My knee mostly feels fine, but there is not a significant increase in function, I feel. I think it's the plan that I'm supposed to drop knee brace and crutches December 3, which will be a bit more than six weeks after surgery, but at the moment, I find that very hard to imagine. Will I be able to do that? Especially with my limited ROM.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 25, 2012, 11:40:43 AM
38 days

During the last week, the burning sensation after exercises has all but gone. The ROM is progressing only very slowly, I'm now doing 3 x 5 repetitions 3 to 4 times a day, and my current ROM is somewhere between 45 and 60°. I was supposed to reach 90° by next Monday, but that's probably unrealistic. I wonder whether that will mean that I have to keep the crutches and braces for a longer time? Originally, it was the intention for me to lose them by then. I still wear the brace and use the crutches all the time, but I don't put much weight on the crutches while walking or standing. It would be nice to get to sleep without the brace though!

Nevertheless, I hope to go back to work starting in about one week. So far, I've been working from home, which has worked great, but I'm looking forward to get back into the office to my colleagues, and I also need to go to some meetings etc. I think the biggest problem will be how to get there. I have about half an hour's drive, but since I won't be able to drive myself, I'm going to have to take the bus.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Adobec on November 27, 2012, 03:31:17 PM
I don't think you are being neurotic-- I'd be livid if another doctor performed surgery without my knowledge
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on December 13, 2012, 02:43:33 PM
8 weeks update:

It's been a while since I've shared an update on my progress. I've been very busy at work.

Since my last update, I have seen my OS, and have started going to regular physiotherapy. My OS said that my knee looked good, swelling was at a normal level at this stage. Bruising is gone. He told me that he thought that the burning sensations I have had earlier on (and still have occasionally) was actually coming from my skin. They cut some nerves during surgery (I also have a "dead spot" on my shin). I find that explanation credible. Then they took my brace — this was one of a half weeks ago. It was a big relief to sleep without my brace on for the first time in more than six weeks.

Then I begun regular visits with a physiotherapist, and aqua therapy. The physiotherapist is pushing me on my ROM. I'm doing flexion exercises as much as I can during the day, and right now I think I'm at about 70°. Additionally, I'm still doing quad sets, SLRs in all four directions with resistance. We have also tried a few exercises with tightening of the quad at low flexion, around 20°, but they still cause pain under the kneecap, which concerns me, so I am avoiding them. Apart from the flexion exercises which I do frequently throughout the day, I do my other exercises twice a day. Afterwards my knee feels swollen/tight. But this is gone again the next morning.

In aqua therapy, I walk around forwards, backwards, and sideways. I have a few other exercises for flexion and strength. I like it. The only problem is that it's such a hassle for me to get in there, as I have to take public transport and change from bus to train… Tomorrow I have another appointment at physiotherapy, and I'm going to ask her when I'm allowed to drive my car again. That's going to make my life so much simpler. I feel that these last couple of weeks have been quite rough actually, not because my knee is hurting or anything, but because I have begun coming in to work, and it's just so complicated getting there, and maybe it's also kind of overwhelming to get back into the normal routine… At any rate, I felt pretty exhausted!

Yesterday, I started walking around in the house without crutches! Major milestone! And it's just so wonderful freeing up my hands… At the end of the day, my knee was pretty sore with the burning sensation back, but I suspect it was actually more due to pushing the flexion. Because this is what has been causing it all along.

All in all, I feel that I'm progressing, but painfully slow. As always, I'm concerned about finding the right balance between pushing my recovery and protecting my knee/grafts. However, I'm also concerned that if I don't push the flexion, I risk having my knee getting stuck at 90° or something. Still, it hurts when I push it. But the cartilage implants should be able to withstand it at this point. I guess it's more important to be careful with the strengthening exercises. The OS told me to still avoid loading the leg at angles above 30 to 40°. I suspect it may even be a lower angle, given the fact that I get pain when I try it.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on December 31, 2012, 01:25:31 PM
Happy new year to everyone!!!!
 Just passed 10 weeks mark, lost the crutches, and am now doing a bit of stationary biking... yay!
I will post an update soon.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on January 03, 2013, 11:57:51 AM
11 weeks

Just wanted to publish a small update on the day of my 11 weeks anniversary since surgery. I've just come home from a physiotherapy session, including aqua therapy. Things are moving steadily, but slowly, forward. My range of motion is now 120°, which I think is satisfactory, especially since this was a problem initially. I have lost the crutches, but still try not to walk too much as I walk slowly and get sore after a while. I still get pain under the kneecap when I try to put on load in a bent position, so I've been told by my OS to avoid that for three or four more weeks. Just hope I haven't damaged anything so far...  ??? I definitely have avoided excessive loading, but I have loaded it sufficiently to feel a little bit of pain under the kneecap now and then. It's hard to avoid though.

Currently my exercise regimen consists of
-Quad sets
-forward and sideways SLR lying down
-SLR in four directions with resistance
-3 min. stationary bike without resistance
-balancing on one leg
-various exercises standing up with straight legs, a cloth under one (the healthy side) or both feet.

If I do too much, it will hurt during the next day, but always gone again the day after that. I try to adjust intensity to avoid pain into the next day.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on January 16, 2013, 03:28:52 PM

Wonder if anyone can provide me any comforting/reassurance?
My knee is progressing nicely, I believe, but then yesterday I had to do a bit more walking than usual, in connection with air travel (though not much, asked for assistance at the airports!). I also sat in an airplane seat for about 5 hours in total - and then today I noticed I had bruises on the back of my knee (streaks of blue/purple, like subcutaneous blood extravasation)!!!  :o It does feel a bit more sore, especially on the back side, but within the limits of what I have tried before.
What is the cause? Have I damaged anything? I don't see how I could have, I haven't done anything else unusual.
I am a bit worried... :(
Anyone tried anything similar, or have any other input?
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: randomlife on January 17, 2013, 04:17:01 AM
Hi sune,

My response is totally unhelpful because I've not experienced anything quite like you describe. Just wanted to let you know I'm sending good vibes your way!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on January 17, 2013, 06:10:48 AM
Thanks. I am thinking it could just be swelling from flying and having my legs down and stationary several hours - the increased pressure in the operated area might have caused a little bleeding in the scar tissue etc (probably some fragile blood vessels there) ... there is no blood supply to the cartilage, and I can't see how I could have damaged anything. (I think I see a little bit also behind the unoperated knee) Still, strange! Going to try and call my pt again today.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on February 03, 2013, 12:55:19 PM
15 weeks update

Hi folks. It's been a long time since my last update, so I figured now would be a good time…

I think things are going really well. A few weeks ago, I panicked a bit because of sudden bruising behind my knee. However, it hasn't changed any of my symptoms or lowered my limits, and neither my surgeon nor tissue therapist thought it was anything to worry about. We weren't really able to offer an explanation either, so I guess it's just one of those things that will never know what really happened. I saw my doc last week, and he was generally quite pleased with my knee. He did an ultrasound and said everything looked quite good.

So go to formal physiotherapy once a week, and aqua therapy twice a week in addition. I also exercise at home twice a day. Normally, I don't have any pain in my knee, but I do get sore if I overdo my exercises. I have a very good feeling about my knee… Already, certain things that would cause pain before, no longer cause any pain (such as walking naturally… Previously I would have to make my left knee a bit more stiff in order to avoid an angle that hurt).

My rate of recovery may be slower than others, but everyone is different and I have lesions in three different locations, so my doc has asked me to take it easy (although he also said that I should get some muscle on my leg…). I agree, and I'd rather go a little bit too slowly and avoid damaging the grafts.
Now I'm up to 10 min. on the stationary bicycle… That is a similar level that I was able to do presurgery without getting a sore knee. My walking distance limit is also about the same by now as before surgery. I'm still avoiding stairs, both up and down, although I can do a step up, and more so if I can use my arms to help a bit. I've also tried the elliptical/cross trainer, and a little bit on the stair master, but my knee didn't feel quite ready for the latter yet.
So I'm keeping a good attitude - and I'm feeling optimistic that the day will come where I can get a good aerobic exercise on the bike and walk as much as I like! Maybe skiing, and  even more sports!!!  :D :D :D
All the best,
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: jco on February 11, 2013, 01:58:50 PM
hello sune  3 days out of denovo implant  just reading your post helps to hear others recovery ups and downs .Brings encouragement to go through what is ahead of me .Hope knee continues to do well and improves mobility.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Mistyd on February 12, 2013, 05:09:31 PM
Hey Sune,

I hope all is going well with you and your recovery! I am sure there are plenty of up and down days, but hopefully, more up days are being strung together ;) 

How is your pain 3 months out?  Have you noticed the strength and ROM returning at a steady pace, or just randomly noticing something here and there?

Have a Great Day!

God Bless,

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on February 16, 2013, 12:34:30 PM
Hey Misty,
I usually do not have any pain, except if I overdo something. I still avoid some activities like going up stairs without handrail support. Too much exercises will cause a little soreness afterwards and the next day, but it's not bad.
My ROM is almost maximal, and my quad strength is what I am focussing on now. It is slow progress!
Especially since I am still being careful to avoid pain, as advised by my OS.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on March 26, 2013, 12:00:47 PM
Hi all.

It's been a while since I've updated, so I figured now is about time. It slightly more than five months since my surgery.

Unfortunately, I had a setback approximately 2 weeks ago, and it's giving me a great deal of worry. Up until then, everything was going really well, and I was very optimistic about everything, looking forward to a new and much more active life. Then I followed my physiotherapists advice of being more conscious about using both of my legs when getting up and sitting down on chairs. So I did that for one full day, in addition to my normal activities and training. It didn't hurt while doing it, but the next day I was sore in the knee, and haven't been able to get back to my previous shape since then. It's like a burning stinging sensation, and while I can get it to disappear if I skip my training and don't walk too much, it only takes a small fraction of the training I did before to bring back the pain, which always comes the next day. When I do the different exercises, it's not really that it hurts while doing it, so from that perspective it's much like before the setback, but there is a delayed reaction the next day. I don't have any visible swelling, or locking, or anything. Sometimes, the injured knee feels a bit warmer than the other.

I'm really worried that I might have damaged the grafts, my mood is really down, and I loose a lot of sleep over it. And it's not making it any better that I feel a lot of anger/resentment towards myself as well as the physiotherapist  >:(. I'm well aware that this is not very constructive, and probably very unfair. I'm angry at the physiotherapist because she suggested it, despite having told repeatedly that we must be very careful in my case with me having three grafts, and despite having told her that I tried already to sit and rise normally from a chair a few times, and it's more or less always caused some problems afterwards. I sometimes feel that she hasn't gone through the trouble of properly researching cartilage implantation, and just treats me more or less as a generic knee patient (it may be unrealistic to expect otherwise). Also, I feel that we haven't really built up to this kind of loading of the knee… At least not down to that angle. I'm angry at myself for not trusting myself more, and being more careful. I could've just try to sit and rise normally a handful of times during the day, instead of more or less every single time, just to test the reaction.

Well, it's not very constructive, but I can't help it at the moment. Working on it though…

An MRI examination was already scheduled before the setback, it's going to be on April 15. My doctors appointment will be two weeks later, so unfortunately I have to wait one-month… I'll try to write to him and see if I can make it happen a bit or earlier, it's a bit long to wait.

Hope everyone else is doing well!
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Mistyd on March 26, 2013, 03:08:18 PM
Hi Sune,

I am sorry about the 'setback' (more on that in a bit).  I can understand how frightening it must be not knowing if the grafts are ok.  I think the mental/emotional side of this type of surgery is possibly the most difficult (from what I've read. I'm on the other corner..awaiting the MACI but insurance is the hold up >:()) so many up's and down's and fears.  Still, at 5 months, while the grafts are still very tender they should be on the course to firming up (not jelly and not marshmellowy, soft plasticy  ::)). 

I know you know this:  Post surgical knee pain has many types of pains, pinches, pulls, bruning, clicking, clunking, etc.  Perhaps you have torn some scar tissue, OR, the scar tissue is still adhered and that s the pinching.  Nerves regrowing can cause all sorts of weird sensations.  You could drive yourself mad wondering when ultimately, it won't do any good.... just make you sick and miserable.  You have been very studious about your rehab.  Your anger (while it may or may not be justified (remember you don't know any damage has been done, so your anger could me a moot point ;)) is understandable even if it is just directed in the loooong rehab this surgery puts you (us) through.  It is an emotional roller coaster for sure!!!  It is a difficult surgery to rehab from, time and patience are the ultimate in ensuring your physical (and mental) health.  Hanger in there Sune!!!

I know waiting until the 15th must seem like an eternity... especially not knowing.  But try not to focus on the bad... re read others posts and be encouraged by the many pains they've had that ended up being nothing (and ignore those that were something ::)).  Take courage my friend, your hardwork will pay off!! ;D

God Bless,

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on March 31, 2013, 08:13:51 AM
Hi Misty.

Thank you very much for cheering me up… I do hope you're right that the implants have not been damaged, although at times I have difficulty believing it could be anything else with the symptoms I'm experiencing. But I try to keep my hopes up. I got the MRI exam moved forward, and I will get the results on April 15.

You're definitely right that it's an emotional roller coaster. I have three boys, and I don't think it's making it any easier for me. I want so bad to be there more for them, playing with them, and to go out more…
 Good luck with your insurance battle!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Mistyd on April 12, 2013, 04:49:36 PM
Hey Sune, just checking in to see how you are and what the results were for the MRI???  I am hoping and praying (literally) that all is well with the implant!  Hang in there!!!!

God Bless,

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on April 15, 2013, 04:13:13 PM
6 months post surgery

So today I saw my OS. He said my MRI looked good, the cartilage has filled nicely, looks smooth, and the bone beneath it also looks happy. I was extremely relieved to hear that, as I had almost expected to hear that the grafts had failed, given my recent bout of pain and problems. But he was not so concerned. He also did an ultrasound, and he could see some irritation around the knee, mainly the tendons on the lateral side. He didn't offer any explanation as to how that had arisen, but I guess it's due to the overloading that I have described previously. He said to focus on slow/heavy exercises, to build muscle, and I think I will also need to exercise only every other day or so to give the tissue time to recover.

So… I'm very happy! At least this is the best news I could get at this stage, I think. But of course it doesn't change the fact that I still have pain and several restrictions, but now I certainly got back a hope that this will disappear again, given careful rehabilitation. I really hope I learned my lesson… Better go too slow, than too fast, no matter how splendid things appear to be going!

Misty, a special thanks to you for cheering me up!!  :) :) :)

Hope every one else's doing good.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Mistyd on April 15, 2013, 04:51:22 PM
Yay!!!  I am so happy that the graft sites are ok!! (thank you Lord!) I know these past weeks have been an emotional roller coaster for you (and not a fun one at that!). At least now, while you may still have pain - you don't have to be afraid of what that pain means (i.e. damaging the graft).  Thus, you can work through the pain (wisely and at your speed) without the emotional baggage that comes with the question "am I doing damage...and what if's".  Good news  ;D

Rehab is a loooong process on this surgery, but getting back to full and active strength and ROM is possible. Hold to that thought!  You are over so many of the hurdles that are present in this type of procedure (whew). 

God Bless (and protect your graft site, and bring the inflammation down in the tendon),


P.S.  You are most welcome friend  ;)
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: randomlife on April 22, 2013, 01:21:18 AM
Fantastic news, Sune! Hope can go a long way to help you feel better. I'm glad that the graft looks good and that your surgeon isn't worried. I'm sure that takes a load off your mind. I hope that you continue to improve from this point forward!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Joeybiscuits on April 28, 2013, 10:15:03 PM

Very good to hear your news from a few weeks ago. I haven't logged into my diary or the site for about a month and just saw your message on my post. Please keep me in the loop as you progress since there are only about 6 weeks between our surgery dates. I am posting an 8 month post-op update today on my diary.

Thank you much.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on June 13, 2013, 11:25:12 AM
Almost 8 months post surgery

Things are progressing steadily. The MRI examination two months ago was a big relief for me, as I was really worried that I had damaged the grafts. My exercises are back up to a good routine, I try to do a serious workout every other day. I think the in between resting day is important for the healing and for prevention of breaking down of the tissue instead of building up. I feel like I'm getting more muscle in my leg, and I've also just recently been able to do exercise that makes my heart rate go up to 140 for at least 10 minutes. This is big for me! It's been a long time since I've been able to do that, and it feels great to get the heart pumping… I do the cross trainer and the bicycle for about 10-15 minutes at the moment, and a stairmaster for five minutes. I might be able to do more, but I'm still afraid to. I also do leg press and other exercises for strengthening my thighs. I basically walk as much as I want during the day, and I've also begun biking outdoors for errands.
 I still can't stop worrying about how much pain is acceptable… My PT has instructed me to be very conscious about walking normally up and down stairs, sitting and raising from chairs etc., but when I do that, there's some pain, perhaps a level 3 to 4 on a scale to 10. Also, after having done it for a while during the day, a minor pain/soreness builds up in the knee (I think), maybe a level 1 to 2. My PT and my OS say that pain during rehabilitation is unavoidable, and I'm sure they're right. I can also accept that, but it's the constant worry about when it's too much and a sign of degeneration as opposed to regeneration. And the self-doubt whether I can tell the difference between good and bad pain. That combined with the impatience of seeing progress is a very delicate balance!
I also have a hard time deciding whether my knee swells or not. Most of the time, I don't think there's any difference in its size, but sometimes I'm in doubt… At the very least, this must mean that if it swells, it is very little.
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: stereohearts143 on June 14, 2013, 04:08:51 PM
Hi Sune,

I just wanted to touch base with you as you and I seem to share a lot of the same experiences.

I had a 2x2.5cm MACI on my Right knee in the trochlea/lateral femoral condyle area in July 2012.  Like you at around the 4month period, my knee started having deep burning & stinging sensation that lasted for about 3 whole months.  During that entire time, I was CONVINCED that the grafts failed.  Luckily like you the MRI revealed that all was okay =) and ALL of my lost sleep was for nothing!

Fast forward to my 8 month period, I was very much like you.  I still had difficulty with getting in and out of chairs symetrically and favored my strong leg.  Only thing I was allowed to do was bike and elliptical with resistance to help build the quads up.  Needless to say I was frustrated because there was still so much I had trouble doing: bending down to pick things up, chairs normally, etc etc with anything involved bending the knee.

I'm almost at my 1 year mark and although I'm not back to my old self, I don't have any pain with what I'm allowed to do.  I have a ton of crepitus (which I'm hoping is tracking / growth issues, will get an answer to this with a scheduled MRI) but am biking and using the elliptical with a fair amount of resistance for 25-45 minutes a day.  Everybody goes at their own pace and the only thing you can do with this surgery is to respect your individual pace and have faith.

My point to you is that the patella and trochlea take SO MUCH longer to heal vs. condyle lesions.  My scenario is different than yours because you had hardware and realignment , so maybe some of your symptoms are "growing pains" from that aspect of your surgery.  But I really wouldn't load it too much with the MACI.  I would stay away from pain (in this case your sit /stands) even at 8months out.  Keep biking and increase the resistance till you feel like you've put on a fair amount of muscle mass, go to the pool and do squats in there to get the control aspect of it and just wait till the 1 year mark to test it.  If at 1 year your graft is good and the OS and PT are pissed at you for having done too little, well then you can always make that up.  Less is more and more is less with ACI's =)

It's been a long road (trust me I know) but keep up the good work!

FYI: I have a friend of a friends who had a patella MACI and some sort of realignment.  She is about 11 months out and just started doing stairs step-over-step with MINIMAL symptoms.  So even though we're not supposed to compare, just a little food for thought =)
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: ozzie on June 24, 2013, 05:46:41 AM
Hi!  Thanks for posting your experience.  I will have an ACI patella with Fulkerson in two days and am excited to finally begin the process, but of course nervous too.  Reading your ups and downs is so helpful and I was pleased to see in your last update that you found out that the grafts are in good shape.  Best wishes for continued progress!
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on June 26, 2013, 10:08:01 AM
Hi stereohearts

Thanks for sharing your advice and experience.

You have a point, it's certainly important to be careful in order to protect the grafts and let the implanted cells mature without damaging them. I feel that both my OS and especially my PT are pushing me, and they claim that a small amount of pain is inevitable, and that they are only having me do things that the knee can endure. Also, pain is not coming from the cartilage, as it is not innervated. So they're saying that as long as the pain doesn't last several days or leads to a downward spiral, it should be okay.
But I don't know what to think. On the one hand, I guess I ought to trust them, they are the professionals and the ones caring for me. Also, it should be said that everything I'm doing only causes minimal pain. Perhaps others would call it discomfort instead? And perhaps progress requires loading with sufficient intensity that some symptoms are inevitable? On the other hand, I'm also thinking that it would be better to be safe than sorry. And do like you're saying, be sure to do some biking every day to stimulate cartilage growth and maturation, but stay away from anything that causes pain. (Although more or less everything causes some symptoms/discomfort, even walking and biking - so it's always a gradual distinction if you know what I mean). But it's difficult… I feel very uncertain about my ability to find the right level of exercise! And at the same time I feel impatient about healing: I need to do some aerobic exercise, I've had several years with way too little, and I feel like it's taking its toll on my body and on my general mood. But of course, I try to remind myself that there is a larger perspective at stake here.

By the way, what do you mean by "doing stairs step-over-step"? Two steps at a time or?
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on June 26, 2013, 10:09:08 AM
Hi Ozzie,

Thanks for stopping by. I wish you the best of luck for your surgery!

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: stereohearts143 on July 13, 2013, 05:36:40 PM
Hi Sune!

Step-over-step means they don't put two feet on the same step, but alternate steps like how everybody else goes up.

I hope your rehab is progressing well  :)
Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: sune on November 07, 2013, 10:20:22 AM
Hey all,

I thought I'd post a small update after having gone to the one-year follow-up MRI exam and doctors appointment yesterday.

My OS was very pleased with what he saw in the MRI images. In particular, he was impressed with the outcome of the patella ACI, as those are notoriously difficult. The new cartilage looked very well integrated in all three spots, and had the right thickness, and in some places was hard to distinguish from the old cartilage. So that was the best news that I could get from MRI. He also examined the tracking of the knee cap, and it was fine.

On the other hand, my symptoms are still varying quite a lot. Sometimes, I feel like I could do anything, I feel strong and confident in my knee, but then I do some rather small thing, and then I have pains for many days even weeks. This means that I still cannot fulfill my needs or wishes for exercise, i.e. it is difficult to get my pulse up on the bicycle, and on the cross trainer, I can usually only go for about 10 minutes, otherwise I'll be sore the next day. The doctor didn't really offer any explanation for this, but perhaps I didn't pursue it enough. I think it might be the tendon below the knee attaching to its new spot on the shin that's irritated (and these this seems to be the region that's giving me the most problems), so I'm hoping it will dissipate over time. The doctor emphasized that the implants are still maturing. He recommended that I make bicycling my highest priority, instead of the strengthening exercises that I've been focusing on so far. At least I think that the results of the MRI will be very reassuring, and hopefully I will not panic as much next time I have knee pain. The psychological side is half of the struggle, as I always fear that I have ruined something.

I told the doctor that walking downstairs hurts somewhat, and he said I should avoid walking too much down stairs, probably for the rest of my life… That was a bit of a downer, I definitely thought that would not be a problem. Well, we'll see, I'll listen to my knee, and if it turns out that I will generally have to limit my walking down the stairs in the long run also, that is all right. As long as I will be able to do some exercise, and walk as much as I would like.

I hope everybody else is doing good.

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: ozzie on January 05, 2014, 08:04:28 AM
Hi Sune,  in November you posted good results of your one year follow up with your OS as well as some inconsistencies in the way your knee behaves-is sometimes very strong and dependable and at other times can seem irritated.  (From reading of others' experiences here and elsewhere and also my orthopedic surgeon's input, it seems like a year is an ideal goal, but always a realistic one for things to return to normal...

.  I had written you a quicknote/post before my first ACI (patella) in june 2013.  i just had a second one 6 months later on my other (left), which also included a trochlea deflect as well as the patella defect...December 26 1 ACI Patella and Trochlea and 2.Fulkerson osteotomy.  I am up tonight with a bit of pain and so reviewing some info on pain meds, osteotomies and ACI procedures and looking for posts on this site of people rom whom I might be able to learn or even perhaps offer support.....

It has only been 1 1/2 months since your post so not sure you are checking in or if much has changed for you, but I would love to love to continue hearing about your progress and your physical/mental state!  You had noted that the psychological state of mind is half the "battle" with ACI-which I know is so so true because even with the MRI, the results are uncertain and one never completely knows the right time to try to do new movements or an impactful action like maybe a hop!🙀....(one of my new ways of entertaining myself during these first boring post op days are lots of icons in my texts and emails-hope not too annoying). I read that the doctor said that you might never be able walk down stairs again.  Did he/she realize as she/he said this what impact this might have on you?  Ie disappointment, shock, disbelief!👎👎👎👎👎👎.  Hopefully this MD is empathetic.

So if you feel like checking in with updates now or anytime, I'm eager to hear and I'm sure that others now and in the future will also find your reports a good resource! One question I am wondering is your support system post op, ie right  after your surgery and then ongoing throughout the year.  I had actually hired a woman to help me for two weeks and she got a permanent position and told me at the last minute. I had planned to pay her $15 an hour for 2 weeks. I am happy that I can save all the money!  But although my friends are offering to pick groceries when they are at store (and we have had some meals brought by dear friends), And to drive me around esp to therapy, i don't have family here and I feel a bit alone.  My 2 teens are off on Winter Break and are making some efforts-bit I've gotten stressed and angry at them for waiting for me to tell them to do everything (including walk dog before noon! And bring me my meals before I faint from hunger). It's so easy for them too because I made a ton of food ahead of surgery and froze in single portions. I had told my good friends that we were planning to have help, although as this week after the surgery has passed, people are learning that she "quit" (before she started) and are bringing some lovely meals. I especially appreciate their company-one hour or so long visit a day is very nice. But now school is about to start again and I don't know who will pick up my son from sports and music lessons. 

Did you just prepare your own food and clean house when you could or did you have lots of family and friends to help?  The hardest part is 1. Being on one crutch 2. Pain meds make it impossible to drive.

 I have had more pain in the beginning of post op this time, but I am guessing this relates to the osteotomy, which you did not have.  I did have 3 days of a lovely nerve block and since that wore off , there is little pain emanating from the ACI SITES.  I do have some drainage on the stitches, but we are waiting until my appointment on Monday (tomorrow)....

I do wish you all the best on your knee and on your support system and your continuing progress.
And thanks for any tips you can send my way (:
Ozzie/Kayla, Atlanta, GA

Title: Re: Sune's Oct 18/2012 MACI and fulkerson
Post by: Lars_HH on December 17, 2014, 07:14:26 AM