DIARIES => Post-op diaries (<50 posts) => Topic started by: stephlouise on November 28, 2015, 10:14:45 PM

Title: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on November 28, 2015, 10:14:45 PM
Here's the first few days of my post-op diary. Surgery was 11/24/15 (Day 0). OS did a DeNovo NT graft to fill a 2cm x 2cm defect on my patella. He opted against the tibial tubercle osteotomy, despite the fact that most physicians do this in conjunction with the graft, because I do not have any anatomical defects affecting tracking.

About me: I am 31, female, athletic, living in California. My first traumatic knee injury was when I was 16 and fell while running. I was a runner and swimmer throughout school, then switched to cycling in my mid-20's. After a few very clumsy falls from the bike, my knee injury became too painful and I stopped riding. In the last 18 months, I've had three surgeries to my left knee, including this graft. The first two were debridements and diagnostic arthroscopies. I've been to three different orthopedic surgeons - the three surgeries were with 2 different surgeons. I've tried Synvisc, Orthovisc, cortisone, PT, and microfracture. Given the size and severity of the defect in my knee, combined with the failure of other treatments, my OS felt that an implant was the only option I had short of TKR.

Here's my diary. I will keep adding to it as I progress and things change.

Day 0:

Nerve block has pain at a minimum. Breakthrough pain is well-controlled with Dilaudid (4mg every 4 hours). I opted against an ice machine and in favor of gel bead ice packs. These have worked really well and Iím glad I avoided the ice machine because the bulky hinged brace I wear would have made it difficult to use the thing anyhow. So I am rotating between four ice packs, plus ziploc bags full of ice cubes when I run out. I ice more than 20 minutes per hour, which I realize I'm not supposed to, but ice is amazing for the pain and swelling.

Surgery started at 7:30 a.m. and took about 90 minutes. Within an hour, I was ready to start being discharged. No morphine was administered in the recovery room. I was in the car and headed home less than three hours after my surgery began.

Breakthrough pain set in about halfway through the commute home, which took about 90 minutes.

My alertness was moderate upon getting home, but faded after my first dose of dilaudid. Iíve had an appetite and have been able to use crutches to get to the bathroom about 100 feet away from the couch.

Doc is allowing minimal weight-bearing as long as my giant splint is locked at 0 degrees.

CPM is supposed to arrive tomorrow and begin treatment that will last six weeks, at 6-8 hours per day. Doc is starting me at 30 degrees for the first two weeks.

The pictures of the surgery were pretty impressive Ė though my family had to confirm that because I barely remember seeing them. Looks like everything went well though.

Post-op appointment is in one week. Until then, it is full bed rest. Dressing can be changed in three days at which time I can shower with assistance, but not bathe.

Day 1:

The nerve block started to wear off during the night Ė I took the OxyContin before going to bed as directed by the nurses. But I was still up every four hours to take dilaudid. The day started off alright, but as it wore on, it turned into the longest day of my life. I cannot get comfortable. No matter how I stack pillows or where I sit, there is pain and discomfort. The problem is that the knee has to be completely straight out. This is unnatural and uncomfortable. By evening the full nerve block wore off and the pain became excruciating. This caused anxiety. By the end of the night, I was taking six meds and was still in tears.

I am itchy from head to toe. Cannot place the reason for it. Benadryl helps slightly, but the drowsiness makes the whole thing a wash. It looks like Iím spider-bitten on my chest and back shoulders. This also itches.

During the night, I woke up hourly or more from muscle spasms in my left quad. These caused me to cry out in pain and nothing helps to ease the pain the spasms cause. The brace isnít helping and just feels constraining at this point.

Day 2:

Woke up this morning to more muscle spasms. Itís my birthday. And Thanksgiving. But I feel like Iíve been bed-ridden for weeks already and just want to rip this split off. Boyfriend helped me wash my hair after some combat and cajoling. That made a world of difference, if only because my scalp no longer itches.

All in all, today is a better day than yesterday. Pain is still strong, but more manageable. And Iím able to find comfortable positions occasionally.

Iím still taking OxyContin and dilaudid. Once the OxyContin runs out (I have two doses left) I will switch to tramadol to take the edge off as I wean off the dilaudid.

My mind is still very cloudy. It cannot quite keep up and my hearing is muffled. I can pass out at any moment, but itís likely a muscle spasm will wake me up. And thatís terrifying. Going to try bananas to minimize the spasms. 

Day 3:

Dressing change day! The incision is about 5.5 inches long, down the front of my thigh and kneecap to my shin. Not sure if itís staples or sutures because I didnít remove all of the gauze, but it looked pretty smooth, so Iím guessing sutures.

The compression stocking kept my calf from swelling like crazy, but as soon as the brace and stocking were off, everything swelled a little out of control.  After about 15 minutes of ďfreedomĒ, I put the compression stocking back on with the new dressing and returned to the locked brace. Itís pretty nerve-wracking to be out of the brace because Iím not allowed to bend the knee at all Ė and any movement is excruciating. 

The CPM was never delivered, but I think thatís a disguised blessing. I canít imagine moving or bending my knee, even with the assistance of a machine. Iím still only lightly weight-bearing and only with the brace on and locked straight. Doc says this will be the case for two weeks.

Pain seems to be improving overall. And Iím sleeping better. So Iím optimistic about getting off meds soon.

Day 4:

Today, I got a shower. A real shower. It was heavenly. Then the pain set in and I had to get my brace back on. But never underestimate the importance of daily hygiene in your overall well-being.

I was optimistic about the reduced pain, but it has come back with a vengeance. Iím resigning myself to the fact that the pain is going to take quite awhile to go away. The incision itself hurts a lot, but itís also internal pain right behind the kneecap and surrounding the kneecap. Muscle spasms have improved, but havenít gone away completely.

Iím more alert, and have extended the time between pain meds. I went off the Oxy early (Day 2 was my last day) and am glad that I did. My pain levels arenít much different without it, but Iím much more coherent. Since NSAIDs are out of the question, Iím supplementing with Tramadol (staggered with the dilaudid) and that helps a little bit. But mostly the pain is treated with ice and ignored through sleep.

I still need assistance for any movement. I use crutches, but still need help standing up and laying down because my leg with the brace is too heavy for me to lift. Any activation of my quads is extremely painful Ė and they are too weak to do much good anyway. According to my discharge paperwork, Iím supposed to be doing leg raises by now, but thatís out of the question.

The hardest part about this so far has been resigning myself to the ďlong-termĒ nature of recovery. Prior surgeries have laid me up for only a few days and Iíve been off meds and mobile within 3-5 days post-op. The fact that this is obviously not the case here is frustrating.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: dal_knee on November 29, 2015, 06:32:52 AM
Did you get CPM machine ?? This aspect is absolutely critical to success for patellar defect cartilage restoration. Cannot be underestimated.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 01, 2015, 01:43:40 AM
I actually didn't. My doc recommended it and told my family it would be delivered the day after surgery. I'm almost a week post-op and I haven't heard anything. I plan to ask my doc about it at my post-op appointment in two days.

In what way would you say it is critical? And should I rush to get it sooner rather than later? I am curious because I've heard mixed reviews on the use of a CPM, but my doc insisted I use it and I am happy to oblige. But he wasn't able to describe specific benefits except helping shape the cartilage (which makes sense and is a huge benefit, but wasn't sure if there is more).

Thanks for the insight!
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: dal_knee on December 01, 2015, 03:19:02 AM
The patellar surface is the most recalcitrant to cartilage regrowth. The CPM provides the proper loading needed by the newly formed cartilage, helping to turn it closer to normal, hyaline or hyaline-like. It's an investment in terms of longevity and durability of the regrown tissue.
If I were you, yeah I would work on getting that sooner rather than later. 
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 01, 2015, 04:11:17 AM
That's all I needed to hear. I've put a call in to my OS. Sometimes it's really about how the information is delivered - and you put in a language I understand. Thank you so much.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: willrunagain on December 01, 2015, 02:29:16 PM
I hope your a healing nicely! I am assuming your insurance finally pulled through? Congrats!

The first week is the toughest with these types of surgeries, but I promise it gets better!  I will second dal-knee here.  The CPM is very important for stimulating proper cartilage growth.  It also significantly helped me to regain knee flexion and reduce stiffness.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 02, 2015, 03:41:40 PM
@willrunagain: Thank you! I actually decided to pay out of pocket. I weighed the duration of a fight against my insurance company (that had already lasted a year) + possible attorney fees, against the actual cost of the surgery and benefit of getting treatment sooner and having control over my healthcare. The surgery (and debt) won. My OS and the surgery center worked with me and so far I'm at $15K for costs that hopefully will not increase much more.

Thanks for the additional vote in support of the CPM, too. I'm still waiting for my OS office to figure out where the ball got dropped - multiple phone calls and I'm still waiting. My post-op got pushed back a day as well, but I'm hoping to have it by the end of the week.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 02, 2015, 04:02:48 PM
Day 8:

Woke up this morning with unbearable pain. Days 5-7 were rough, but the pain came and went and was overall improving. Nights were OK; I slept through most of them with the help of muscle relaxants to curb the spasming (quads, I think) that began around Night 3. I did find that when I was in pain, there was no getting comfortable, no matter what I did - brace off? Pain. Brace on? Pain. Lots of ice, but I was still able to reduce my meds overall.

Today, I feel like I was set back nearly a week. I barely slept throughout the night. The slightest movement sent a shock of pain through my knee. But I stubbornly opted not to take any meds during the night. And I'm paying for it this morning. Over an hour after taking Dilaudid, my pain is easily at a 5/10 resting, spiking if I move at all.

Otherwise, progress is slow, though my knee looks good. I have near constant assistance from boyfriend and family. They work in shifts. Without it, I don't know how I'd get through the day.

I've changed the dressing a few times and the incision is swollen, but clean. Looks like my OS used clear sutures and steri-strips to close the wound. The incision is tender, but not excessively so. I can touch my whole knee (sides, back, top bottom) and there's no pain on contact, with the exception of the patella itself. The pain in the patella is deep and starts on the edges, at the top, and on either side, radiating inward and up.

I removed the compression stocking and just have the Ace bandage over the wound dressing underneath my brace.  Showers are a chore, but worth the effort. I wrap the knee in Saran Wrap to minimize water contact, then I wear the brace into the shower, sit down on the bench that I never saw the purpose of until now, remove the brace, then turn on the water with the handheld shower head. I have help every time.  There is no way I could do this by myself.

I've been engaging my quads a little more and rotating my ankle to keep my calves moving. But I can't put hardly any weight on my foot (in locked brace only) and I haven't been able to do any of the PT exercises included in my discharge paperwork. On day 6, I did three tiny straight-leg lifts without pain - but the excitement of my victory has since dulled, as I can't replicate those results.

Supposed to start working from home today, but with the meds, it's doubtful I'll be able to. The fatigue has dissipated a lot though, and the fogginess of the first few days is almost all gone.

All in all, there's more good than bad at this point. Post-op is tomorrow, and I'm anxious to hear what my OS has to say about the progress. But once I silence the over-achiever athlete in my brain, I realize I'm in pretty good shape for 8 days out.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 04, 2015, 05:57:24 PM
Day 10:

CPM arrived this morning. Apparently I live so far away (2 hours) from the real world (SF Bay Area) that they couldn't find anyone to deliver it.  The machine looks like a medieval torture device, but that just means it matches well the giant brace from ankle to hip. (Photo attached)

For two weeks, I'm doing 30 degrees of flexion, 6-8 hours per day. I'm frustrated by the 1 1/2 week setback of not getting the machine sooner, but better late than never.

Post-op went well.  The stitches are dissolvable apparently, which was a nice surprise. OS ordered one more week of absolutely no weight-bearing (back-pedaling somewhat from the minimal weight-bearing he previously allowed), followed by two weeks of minimal weigh-bearing. No weight-bearing unless the brace is fully extended and locked. Bedrest and, if I do move around, crutches only, for at least another three weeks, then I go back to the OS for another post-op.

My pain has returned to tolerable levels. The OS prescribed a relaxant for the muscle spasms which he expects to diminish with the CPM use as well. I'm again reducing my intake of the dilaudid - trying to go from 4mg every 4 hours to 4 mg every 6 hours, then reducing it to 2 mg every 6, then only taking it at night. NSAIDs are still out of the question, so I can't supplement with a non-opioid.

The OS hasn't yet ordered PT. He told me to start doing quad exercises at home. Right now I have no quad control at all. At first I'm just engaging my quad without movement until I can do so consistently and without pain. Then I can start doing straight leg raises, up to 10 at a time, 3 times per day. All in the locked brace.

Seems the OS is taking a very conservative approach to rehab, which makes sense given the delicacy of the implant. Without the pain, I'm getting more optimistic - daring to think this could actually work  ::)
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 06, 2015, 06:53:23 PM
Day 12:

Got tangled in my CPM yesterday. Doc recommended sleeping while using it. But apparently I am a klutz even in slumber. My knee twisted, machine kept going, and with the brace unlocked that meant some weird angles and a lot of pain before I finally woke up. I'm still in pain today - and scared. I don't know how much or how little it takes to dislodge this graft, but there was definitely a crack when I straightened out.

Otherwise, I've continued to scale off the pain meds. Even with the setback from yesterday, I'm not increasing my dose. I enjoy the lucidity too much.

Still icing frequently. That's the best bet for the pain, though right now the incision hurts more with ice than without - another stage of healing.

Sleeping is still difficult at night. Though I have little trouble during the day. It's a cycle that's familiar to depression, which has me worried. Not that I'd be surprised if depression kicked in after being cooped up - it would just be one more complication I'd rather not deal with right now.

There are other residual effects of sitting/half-laying down all day, like back pain, skin irritation - haven't yet figured out how to balance resolving these minor issues without compromising my recovery. Changing position frequently seems to help, but there's still the constraint of the CPM.

Otherwise, I'm still about 90% dependent on another person. My family take shifts of sorts, depending on who is free, which also means spending all day alone with an occasional visitor in the morning and evening. But those visits are mostly because of my exuberant 90 pound dog. He's the greatest hazard in my house right now, and feeding and letting him out is out of the question for me. So his feeding time has become my feeding time and the remainder of the day I ration water and snacks next to my CPM.

No changes otherwise. Hard to believe not even two weeks have passed since surgery. Feels like a lifetime.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 13, 2015, 11:01:30 PM
Day 19:

Pain still fluctuates constantly. I've had two sleepless nights in a row. Initially, I was baffled by the sudden resurgence in pain, but I finally figured out it's because the muscles are starting to work again. I've been relying on my quad more and more each day, but I pay for it in the evenings.

If I slack with the CPM, I pay for it. Yesterday I got out of the house for a few hours (on crutches, no weight-bearing, locked straight leg brace) and didn't use the CPM - bad idea. By dinnertime I was in tears and did not get any pain relief until I strapped my leg into the CPM this morning. Lesson learned.

Technically I can start weight-bearing as of Thursday - 30-40 lbs tops. But the pain levels have been too high for me to attempt it. Instead, I've been working on standing with minimal weight on my left leg, focusing more on balance and building quad strength.

The incision is healing well. Replaced the steri-strips/butterfly bandages to keep it from separating with swelling. It is still painful to the touch, but it's tolerable. It's looking like the scar won't be much more than a thin 5" line down the front of my kneecap.

Swelling varies, but corresponds directly to the pain level. The more pain I'm in, the more my knee and foot swell. In contrast, my calf is the smallest it has ever been due to muscle atrophy. The same goes for my slack left quad.

Days are repetitive now. Working from home, CPM all day, muscle relaxants and pain meds at night. Still no driving allowed. Mostly, I just wish I could peek inside my knee to see if the graft is doing what it's supposed to. I've been able to kick the depression that was creeping in thanks to visits from family and a conscious effort at attitude change (this too will pass, have faith it will work, think positively).
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: Torao on December 14, 2015, 06:14:45 AM
The CPM machine is so much fun. I never trusted myself to try to sleep in it, so I had to do my 6-8 hours a day while awake. Which made the dog very curious about what it was. Trying to shoo him away when he really wanted to know that that strange thing was ended up being a little awkward. Fortunately the other dog was afraid of it.

Good luck with your continued recovery.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 21, 2015, 04:39:18 AM
@ Torao: I also use the CPM only during the day. Luckily, I've been working from home, so it's possible. But balancing a laptop is impossible, so it gets awkward. Interestingly, the CPM is also the only real pain relief I get, so there's a definite love-hate relationship with it. (My dog can't decide what he thinks either. Though he does snuggle markedly less when I am using the CPM. Kind of disappointing. But he's an exuberant 90-pound Weimaraner, so there's been a concerted effort to keep him from me during recovery. Not easy since he's usually like Velcro.)
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on December 21, 2015, 04:59:30 AM
Day 26:

Although the worst seems to be behind me, my new routine consists of sleeping for a couple of hours, then waking up in excruciating, throbbing pain. I then head to the living room couch and turn on the CPM, which is the only answer to my pain. Even pain meds (dilaudid + Soma + codeine) do no more than take the edge off. 

The CPM has been adjusted to 40 degrees flexion. It feels like my knee is going to explode as it nears 40 degrees. The swelling has nearly disappeared, except for a baseball sized lump where my kneecap is supposed to be. I don't know if it's fluid, or inflammation, or what ... but I don't like it.

If I'm not using the CPM (at night, for example) my knee gets very stiff very quickly. I felt bold and went to a movie and dinner with my significant other this past weekend (Day 24, for anyone counting). I took a wheelchair, which helped, but it was too soon. My leg swelled up and the slightest movement by the end of dinner was tear-inducing. I only took codeine before the movie started to fend off pain ... but didn't want to keep taking meds. Got home, turned on the CPM, and within a couple of hours I felt better. Until 2 hours after I fell asleep when the pain returned. So it's a cycle.

My four-week post-op is Wednesday. I'm anxious to hear if I can start weight-bearing more and if my range of motion on the CPM will increase.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on January 04, 2016, 04:49:53 PM
Day 41:

Tomorrow will be 6 weeks post-op. I can hobble a few feet with a cane and the brace. But still not truly mobile. Haven't driven since the surgery.

My OS gave me the DeNovo rehab protocol. It calls for me to be at 90 degree ROM on the CPM by tomorrow. Looks like I might get there. I increase by 5 degrees every day for the last two weeks. It also calls for me to completely ditch the brace cold turkey tomorrow. I'm less comfortable with that idea given my weakened quads and hamstrings. But, I will try - maybe use an Ace bandage to limit the amount of twisting that can happen until I'm stronger.

My wound is healing beautifully. I've been using Mederma and finally got the last of the undissolved stitches removed. Despite being over 5 inches, I don't think the scar is going to be very noticeable a year from now.

Physical therapy begins January 11. Living in a small town there aren't many options so I'm not starting as early as I wanted. Had to wait for an appointment. In the meantime I'm allowed to do isometric closed-chain exercises. I don't know what these are and Google is not my friend on this. So I'm continuing with straight leg raises and basic quad flexing for now.

Apparently I'll be able to start low-resistance stationary biking at Week 8  ;D   So now I have a concrete goal.  At week 12, I'm supposed to ditch the cane and be able to walk without a limp.

The protocol covers 18 months of recovery, all the way up to jogging and running on a treadmill. I don't plan to do any jogging again - not ever - but it's encouraging to see the protocol go that far. I'm hoping I can find a protocol more tailored to a cyclist, given the unique challenges we face on the road. Admittedly though, I'm terrified of a fall, so the wind trainer will be "road" for awhile.

I am still having trouble with sleep. Anxiety seems to be playing a big role in that, combined with stiffness of the joint within a few hours of falling asleep. I'm still getting up in the night to use the CPM which helps after a few rotations. Pain meds are a last resort.

Moving around, traveling, basically doing normal, everyday things including leaving the house - all are extremely difficult and put a lot of strain on my knee. Swelling is still present and gets worse if I'm out for too long. Car rides are painful after about 15 minutes. It's hard to pinpoint what exactly causes the pain - lack of flexion is an issue... but so is too much flexion. A lot of it seems to have to do with the elevation / angle of my hip. My circulation gets cut off pretty easily and everything from my knee down turns purple when I try to sit like a normal person (e.g. in shower, in car, in restaurant) or if I'm up on my feet too much.

I'm trying to regain some independence this week. After 6 weeks of constant care, and stressful holidays that I couldn't participate in 100% (no traveling), I'm ready to figure this out on my own.

If all goes well, I will be walking with a cane, no brace, and driving, by the end of the week and returning to work on Monday.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on January 12, 2016, 01:47:58 AM
Day 48:

Today I returned to work. It was only for a half-day, but it was a good start. My hour-long commute each way was uncomfortable, but not intolerable. I am using a cane (since about Thursday). I'll be using it for at least one more week.

I'm behind with the CPM. Per protocol I should be at 90 degrees as of last Tuesday, and 120 degrees by next Tuesday. But each time I get close (I've hit 90 degrees a couple of times in the last few days), I have to dial it back to about 70-75 degrees and work my way back up throughout the day to 90. Hitting the peak flexion is just extraordinarily painful because my knee simply will not bend that far.

PT was supposed to start today, but I faced some unexpected setbacks at my appointment. I'll see a new therapist starting Friday with hopefully more success. I tried a few exercises at home to see what my abilities are like with mixed results. The protocol calls for isometric closed-chain exercises... I still don't understand what this means except that my foot is supposed to be on the ground. That is difficult because I don't have enough range of motion or strength for any of the exercises I found. So ... I tried straight leg lifts and side leg lifts. Both are painful, but possible for a few reps. I'm hoping a PT will be able to improve these results as well as ROM.

CPM use continues until Week 8, I believe. Then I plan to replace it with a bicycle.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on January 15, 2016, 03:07:16 AM
Day 51:

Work has proven difficult. Mostly because sitting at a desk is extraordinarily uncomfortable. I cannot bend my knee enough to sit normally in a chair. I've been propping my leg up under the desk, but that hyperextends my knee, or requires me to twist my hip so that my knee is on its side, slightly bent. Neither is comfortable.

By the end of each day, my knee is swollen and very painful. The incision site has become inflamed - I expect from swelling. I've also made the stupid mistake of neglecting the CPM due to my own fatigue.

The dog jumped onto my knee last night as well. That pain was one I will not soon forget. It appears there is no *real* damage though, which is a relief.

My ROM is improving just by virtue of being mobile. Though I think I'll probably be using the cane for awhile beyond the 8 week mark.

So far, I am comfortable with my progress and actually pretty pleased with my pain and mobility levels. After 7.5 weeks, I feel like I would about 3-5 days after an arthroscopic debridement. It's really not too bad.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on January 31, 2016, 08:56:06 PM
Day 68: (Two months post-op)

I've been in PT for about two weeks, and back at work for three. The PT has been great for ROM - I'm finally at 118 degrees flexion (PROM). My AROM is still a paltry 80-90 degrees, but that is primarily due to quad weakness. The patella is stiff and a lot of scar tissue formed during the first 10 days post-op when I was locked in hyperextension. The therapist is working to increase flexibility and movement of the kneecap so that it will track properly as my quad strengthens. Exercises are basic leg raises, stretches, hip abduction. Anything to strengthen the outer quad for better movement. At week 10 we will start working on hamstrings and inner quads, per protocol.

Pain has increased significantly. Stabbing, sharp pains start at the top of the kneecap at the patellar tendon  and radiate into the patella. When this happens, my pain levels spike to a solid 8 and very slowly dissipate to a resting 4-5. It can take hours to get the pain back down. Ice helps, but it is a temporary fix. The CPM no longer has the pain relief effects that it once did. And pain killers are useless for this.

I still don't have full nerve recovery in my knee - there is a tingling numbness superficially, especially on the lateral side of the kneecap (outside of my left knee) which is the direction my patella was flipped during surgery. After a shower there is visible dark bruising on that side of the incision as well. I don't have any explanation for these symptoms and my OS seems just as confused as I am, which is disconcerting. Swelling has not gone down. My knee remains about 1.5 times the size of normal and consistently feels like there is an Ace bandage wrapped too tightly around it.

On a good day, I can make it a few steps without the cane, and even with a gait that mimics normality (hopping limp of sorts). But then my knee gives out and I'm apt to fall. The pain also increases in severity after I try walking without the cane. Driving or riding in a car seems to be the worst thing for my knee. The pain is unbearable after about 30-40 minutes.

The incision looks pretty good. The tips have started to heal beautifully (using Mederma daily may be helping) so that the incision appears to have shrunken to about 4 inches from the initial 5.5 (approx.) There is still some inflammation in the middle 3 inches - swelling of the scar so that it is raised over the rest of my skin - but I assume this is part of the healing.

Despite the pain and other odd, frustrating symptoms, I'm trying to increase my activity levels. The rehab protocol provided by my OS allows cycling as of Week 8. I can barely do a full rotation and my average RPM is embarrassingly low ... but it's movement. For now, the stationary bike is my salvation.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: 01 on April 28, 2016, 08:18:00 AM
How are you doing now, stephlouise?
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on April 28, 2016, 04:41:16 PM
5 months post-op:

Hi 01, thanks for asking!  I'm still recovering - but I'm optimistic that I'll be biking and walking by the end of the summer. Physical therapy has been tremendously helpful in regaining balance and strength. My quad is still very under-developed, but it's improving.

Walking is getting better, but I use a cane when I leave the house. Any surface that is sloped or uneven causes me to fall. I still cannot navigate the driveway of my house without doing a zig-zig to reduce the effect of the incline - I'm sure my neighbors get a kick out of it. But, I can walk about a block with the cane if the surface is flat. My continued use of the cane is likely a strength issue because my knee just gives out, and I can walk well around the house. Gait-training is really helpful, but if I don't focus on my steps I still have a limp (bad habits, basically).  I'm going to start light yoga and extend my time on the stationary bike over the next month in the hope that I can expedite the growth of muscle.

I'm hoping to have an MRI done this coming month. There is a click at times when I fully extend my leg after full flexion (my ROM is at 135 degrees). But this seems to have improved and could be due to my lack of quad strength causing my patella to track improperly. The MRI will hopefully confirm whether it's a muscle degeneration issue or a cartilage issue (I'm hoping for the former!) 

Nerve pain has been the biggest problem, but it is intermittent thanks to medications and creams. I'm finally allowed to use some NSAIDs again since the cartilage is (likely) finished growing. This issue is uncommon, but it doesn't rise to the level of CRPS (or RSD) thankfully, and is likely the result of having 3 knee surgeries within just over a year AND having had chronic pain for so long. It should be reversible with the help of PT and meds.

All in all, I'm pleased with my progress. My pain levels are, on average, lower than pre-op. When the pain strikes it is debilitating, but it's less common than before. My recovery is taking longer than the standard DeNovo recovery time, but that has been attributed to the nerve pain.

So, that's the status ... I'll update again after I get an MRI done. Hopefully with good news :)   Thanks again for asking! It was a good reminder to update my post.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: 01 on April 28, 2016, 06:29:32 PM
Glad to hear you are getting better! :) I hope the MRI will show good cartilage. Too bad that your recovery is taking longer than usual.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on January 08, 2017, 12:18:01 AM
410 days post-op:

I intend to start a new thread with a summary of my impressions of the De Novo surgery, but thought I'd first post a follow-up here, just in case anyone is still checking in on this. My one year De Novo anniversary was Nov. 24, 2016, and this past Thursday, January 5, 2017, I had my first post-op debridement. This entire experience has been a huge roller coaster and extraordinarily educational on so many levels.  Having the added complication of what turned into full-blown RSD has made recovery one of the greatest challenges I've ever faced.

At one year post-op, I was walking better than prior to surgery, but still could not run, walk stairs, or ride the bike. I could walk more about 0.5-0.75 mile, but not without complications. When I did walk stairs, it was one step at a time and without bearing weight on my "implant knee." In July 2016, almost 8 months post-op, I was having a good day and "forgot" to be cautious while walking only three stairs into the backyard. My knee gave out, causing me to fall hard (luckily only three stairs!) and I ended up with a severely sprained right ankle, and with a mild sprain to my implant knee. It was a huge setback. About a month after that, I slammed my implant knee into a conference table (the bane of my existence, as anyone with knee injuries knows - those things are dangerous!) while seated and was set back about two months in my RSD recovery.

In May, I had an MRI that showed the surgery was - for all intents and purposes - a medical success. The cartilage grew in as desired, although it was a little uneven. Regardless, there was no longer any bone-bone contact at the patella. This was incredibly encouraging, but didn't change that I was still experiencing a painful "catching" when extending my knee and when I tried biking.

In October, my OS determined that another surgery would be the only way to (a) figure out the cause of the catching and thereby the true success of the implant; and (b) to fix any lingering issues. Due to the RSD, any surgery is a huge risk for me, but I'd seen quite a bit of improvement and had to weigh the cost of waiting too long before the next surgery and thereby delaying my mobility against the risk of making the RSD permanent by flaring the nerves. We scheduled surgery for January 5, 2017.

I am now two days post-op, following an arthroscopic debridement and chondroplasty. My OS is extremely conservative and warned me he may do absolutely nothing during surgery, as he would err on the side of preserving tissue. He made only two incisions (compared to the 4-5 during prior arthroscopies) at the base of my patella. He ended up doing significant debridement of scar tissue resulting from my implant surgery. There was minor chondroplasty needed due to the unevenness of the implant growth. The scar tissue is the likely cause of the "catching" and pain I was experiencing. The good news? The implant looks great. It nearly blends in with my regular cartilage. The only abnormality is that it is thinner around the edges of the implant, which isn't optimal, but is unlikely to cause any impairment to my mobility.

Right now, I am thrilled with the outcome of the implant and the most recent arthroscopic surgery. I am already starting to walk without crutches. I would have been walking yesterday, except three nerve blocks were done to control my nerve pain (one femoral pre-op and two sciatic post-op). Those wore off after a few hours and the pain was not controlled until today. Now, I'm controlling the pain with Percocet and Aleve. Ice is not the friend of RSD patients, so I'm limiting the cryotherapy as much as possible.

Already, I am noticing an improvement in my knee. I can do quad sets without pain, which is epic. My knee is weak and I'll likely need a cane for a week or so until my pain response has diminished again (causes my quad to give out randomly), but if my recovery progresses at this same rate, I am optimistic I will finally have the knee that I hoped for from the implant.

I think it is important to realize that the De Novo implant has an 18-month full recovery period. The RSD set me back quite a bit, but I will be 18 months post-De Novo as of Memorial Day 2017. That gives me a few more months to work through the kinks.

Physical therapy starts in ten days with aquatic therapy 3x a week to strengthen the quad and rebuild the muscles. My muscle development was stunted by the RSD, so the hope is the aquatic therapy will induce minimal pain response so that I can transition back to the bike.

The hardest, and least anticipated, part of the De Novo surgery has been the depression caused by both immobility, as well as disappointment from setbacks and lack of progress. It shocked me just how hard it was to persevere despite some serious obstacles, and despite progress that consistently and unavoidably fell below my personal standards of physical achievement. I've been lucky to have an amazing surgeon who has been an absolute cheerleader (seriously, at some appointments his only role was to tell me to keep trying and that, no matter what, we were going to get me riding the bike again). The power of a supportive physician should never be underestimated.

This has been somewhat rambling (I blame the Percocet), but hopefully all the details are there. 
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: NewYorkDancer on January 14, 2017, 04:35:03 AM
Hi Stephlouise!

Would love to talk to you privately about your experience with Denovo as I just has this procedure done in November 2016! Is there a way to message you privately?

All the best!
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on January 14, 2017, 05:31:51 AM
Hi NewYorkDancer,

I just sent you a private message. Let me know if you didn't receive it! Hope your recovery is going well! Two months in can be a rough time, but hopefully you're back on your feet!

Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on January 14, 2017, 05:32:48 AM
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: Smys21 on February 14, 2018, 06:34:01 AM
Hi Stephlouise,  I am hoping you will see this ass I would really like to talk to you about your Denovo experience and how you are now after the debridment was done. I think I am in the same boat as you were; I am 4 1/2 mo post Denovo and am having almost exact same issues you had. Can you please message me so I can ask you some things? Please and thank you.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on February 14, 2018, 06:49:04 AM
Hi Smys21,

Thanks for reaching out. I just sent you a PM and am happy to talk to you about my DeNovo experience.

A brief update: Iím 26 months post-op and have a well-functioning knee most days. Occasional pain is annoying, but not debilitating. I can cycle, walk the dog, do stairs (cautiously, I admit), and even run for a few steps when Iím feeling bold. The RSD cleared about 90% after the arthroscopy to clear scar tissue. I got hit with the flu so I stopped riding, which I was doing weekly, and Iíve noticed stiffness and nerve flare-ups more in the last couple of weeks. I expect these to clear once I get back on the bike and moving my knee around. This has been an odyssey of truly epic proportions. No two experiences will be identical, but if my trial and error, and frustrations with expectation and disappointment can help make your journey any easier, Iím happy to share what Iíve been through, what has failed, and what has worked.

Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: andreaga on May 15, 2018, 10:35:45 PM
do you have any up-dates after your surgery? Last time you posted at 6 weeks post-op and I find your posts very helpful. I'm wondering how you're doing couple years after the surgery.
I'm 5 weeks post- op today. Thank you so much, looking forward to your up-date.
Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on May 16, 2018, 12:22:36 AM
Hi andreaga,

Congrats on your surgery and being 5 weeks post-op! I hope your recovery is going well. Are you weight-bearing yet?

I'm really glad to hear that the post-op diary has been helpful. That was my goal in chronicling my progress because the surgery carried so much unknown for me. I wanted to reduce that uncertainty for others.  I did continue to post beyond 6 weeks, but the updates were far more sporadic. Check out replies #19 and #21 for more detailed long-term updates. I've also added another current update below.

I am now 2.5 years (30 months, almost to the day) post-op. Here's the good, the bad, and the ugly...

The good: I can ride the bike again (which was my #1 goal for this surgery, even more than walking!) and I ride 10 miles at a time multiple times each week. I can occasionally wear heels (I'll be wearing them for my wedding this fall) up to 3.5 inches high. I can walk the dog, do yard work, climb stairs (carefully), drive a manual, do squats, and climb around the house for DIY carpentry projects. Most days, I do not think about my knee or my surgery or my limitations because they do not affect my everyday life or my career.

The bad: When the pain hits, it's very unpleasant and it's usually unexpected. I'm probably about 85% ability. I will never be 100% - a fact I have slowly resigned myself to. But I'm 34 now and gained 25 pounds post-op (going from a very fit 115 to a soft 140 at 5'7"), so it's not surprising that it's an uphill battle to maximize my athletic ability and mobility at this point. I have to be careful using stairs, especially going down stairs. My body makes me pay for any physical excess - heels over 3.5 inches? I'm in pain and have knee weakness the next day; heels for more than a day or two? I trip and fall and am set back a week or two; too high a gear or tackle some hills on the bike? searing pain through my quad and behind my kneecap until I stop the activity; sit for too long with my knee at 90 degrees? my lower leg goes numb, I fall, and have painful pressure behind my kneecap. None of this is debilitating and it's all MUCH better than what I experienced pre-op. But it's a fact of life. As I write this, I have stinging pain behind my kneecap because I wore heels to work. It's a trade-off. Also note, I take zero pain medications. Not even Aleve (which would likely alleviate much of the pain but I hate pills so much after taking them so long, that it takes a lot more than non-crippling pain to get me to break open the pain killers).

The ugly:  Mostly, I walk normally and without a noticeable limp. On really bad days, my leg drags a bit, but not markedly.  People who meet me now have no idea that 2.5 years ago I was using a cane and barely getting around. When my knee gives out, I'm likely to trip, but can usually recover, and then have a limp until my body can shake it off. My quad has not built back up yet, so my legs are lopsided (my family swears this is noticeable only to me). And the muscle atrophy and long recovery resulted in a slower metabolism, so the athlete in me is screaming at the uphill climb to fitness.

In summary: I would do this all over again. Even if not allowed to change a few things (like getting the CPM sooner would've been helpful, or getting the debridement sooner), this graft has been life-changing. I had resigned myself to being crippled when my first surgeon told me I have zero options to fix my patellar defect, and then later when my 3rd surgeon couldn't convince the insurance company to cover the cost. I am still paying off the surgery (only one loan left!), but it has been worth every last penny. Now, I look forward to walking and hiking, I do not dread getting out of bed or panic when I cannot find a parking spot in the front row. I can go to baseball stadiums, snorkel, and walk on the beach (sand was off-limits pre-op). I do have to be more careful than anyone without the graft, but it's a small inconvenience for all of the freedoms I've regained.

Best of luck with your recovery. Patience and optimism will help you enjoy the tiny victories, and make the healing process so much more bearable.

Title: Re: DeNovo NT graft - Recovery and Post-op Diary
Post by: stephlouise on July 04, 2018, 08:25:35 AM
In light of recent requests to update this diary ... and in light of how disheartened I was to see how few recent DeNovo posts there were ... I'm posting another update.
Some personal background not included in other updates (I think):
I was athletic before my surgery. Not olympic-level. Not "ripped," but athletic. I like motion. Constantly. I was a cyclist, riding 125 miles in a weekend, easily accomplishing 40+ miles on a relaxed day. Running and jogging were out of the question given I was 16 at the time of my first knee surgery, but I still swam and loved my 400m breast stroke events, aiming for bike-cycling biathlons. From July 2014 until my graft in November 2015, I had gained 15 pounds. From November 2015 until December 2017, I gained another 20 pounds. None of it muscle. That was my "starting point."

By the end of 2017, at 34 years old, all of my muscle had atrophied. My legs, my arms, my back, my abs. It was demoralizing in a way I cannot even put into words. This isn't about weight gain, it was about muscle loss. Which I think is relatable for many on this forum. Because we wouldn't be here if we did not want to keep moving. So my goal became (and remains) muscle gain. I cycled at every opportunity, after work, every weekend morning .. but was conservative about my cycling to the tune of a maximum 10 miles at a time for fear of pain, over-exertion, knee damage, muscle damage, ...

I hit a weird sort of wall in June 2018. (2.6 years post-op, but who's counting?) I desperately wanted to advance my athletic ability (cycling) but kept feeling pain. So I pushed past the pain. I ignored it. No pain meds (I really hate them) just grit and a patient cycling partner on the road and another partner at home who both ignored my obnoxious personality, only 85% of which was the result of my pain.

This is not always a smart approach. So I went about it in stages. I did my regular workout and watched whether (and how) the pain dissipated. Then I pushed myself another 5 miles (equivalent to any milestone within one's individual comfort level, for me this meant an additional 10-15 minutes on the bike outdoors, flat land). I watched the pain go away. Each time pain felt unbearable, I watched it closely and waited for it to disappear. And it did. As long as the pain went away, I felt comfortable pushing myself further.

I've attached photos of my quads. I started this "watching the pain disappear and pushing harder" approach on June 6. I don't measure my success based on my weight because that's crappy for my self-esteem (I was slim and athletic and gained a lot after my surgery as described above, but kind of love the curvier figure I've gained, so weight # has become irrelevant). However, I definitely DO base my success on how big, or defined, or noticeable, my quads are. Sculpted quads make a strong cyclist and swimmer. And that's how I value myself. It's personal.

Before June 6, 2018, my left quad had started to harden, but had no form beyond a line of definition (shadow) on the side at just the right angle. My right quad, on the other hand quickly almost fully developed, so I looked lopsided. As the photos show, I'm balancing out a bit ...

About four weeks after reseting my attitude ... cycling 15-25 miles each workout, with a workout 2-3 times a week ... that's the photos. I'm excited about my quad definition. I'm excited about my progress. It aches when I cycle uphill. But it feels better than walking even a 1/2 mile with my dog. The pain always goes away after riding. And (with careful training and technique, for disclaimer purposes) I can do 25 miles, including canyons at 7-12 MPH uphill, in less than 2 hours. I did not think I would be here again. Ever.

My 5.5 inch scar is still partially visible on my left knee. But my muscles are developing definition. I can do quad sets. I can do squats WITH 15 LB WEIGHTS. This is VICTORY for me as a DeNovo patient. And I am celebrating this victory.

My point is this: (1) celebrate your successes - no matter whether they make sense to anyone else; (2) find a workout that works for your body - cycling was my sport before, swimming would be better now, and walking is obnoxiously challenging to the point of being excruciating, yet I'm in amazing shape - I can't imagine being a runner with this graft because I'd be so disheartened, so switch it up and find an activity that works; and (3) did I mention celebrate? Because seriously, celebrate your success. Despite noticing the physical changes, no one around me understands why I'm so thrilled about the attached flash photos of my quads. BUT I DO. If you notice a milestone, celebrate it. CELEBRATE it. Mobility is the reason you endured this graft. Or will endure this graft. Or any other procedure you choose. So celebrate mobility.