Carticel recovery @ four months

I reached my four month anniversary two weeks ago, and to celebrate, I decided to absolutely abuse my new knee.

(The decision was more like "I've got some business travel to do in Europe. What if I used my spare time to do a walking tour of wherever I happen to be, and count on only needing regular sleep to recover?")

Before further explanation, let me catch up on the last two months: I transitioned from my full-length leg brace (ankle to thigh) to a much smaller unloader brace which I wear only when awake. The smaller brace allows complete freedom of movement, and as I learned, is firstly for protection, not recuperation. (In other words, it is designed to keep you from doing anything stupid, whether intentional or accidental.)

Along with the new brace, I have graduated from mentored physical therapy to a self-guided physical therapy program, also graduating from increasing range of motion to increasing strength. My typical routine is a 5-10 minute cardio warm-up followed by a series of lifts - leg extensions, leg press, hamstring  lifts, and thigh abduction/adduction, finished with a cardio session of 20-30 minutes either stationary cycle or elliptical. (Though typically shorter intervals with the elliptical.)

I alternated every day between the above lifting routine, and aquatic sessions - 15-20 minutes of chest-deep movement exercises and up to a mile of lap swimming. I highly, highly recommend having an aquatic component, btw.

I thought I had a complete approach, but I was reminded at my four-month check in that I need to continue the leg lifts with ankle weights in addition to the gym & pool work.

For the last month or so it has been very exciting to see increases in leg strength. The progress has been obvious just looking at my weight lifts, and by my speed and strength in the pool. Also, by and large, I have been pain-free even during my most aggressive workouts, though plenty of times I have rapidly fallen asleep on my couch following a good workout.

I have also weened myself off of the pain meds, including ibuprofen (Advil), which I'll take 1-2 times per week.

On to my 4-month update:

So, at four months, my doc, Dr. Zaslav, was very happy with my status. No problems, good flexibility and good strength. I won't see him for another 4 months, and in the interim I am allowed to wind down my use of the unloader knee brace, and wind up outdoor cycling - though only on flat ground, and without standing up on the pedals. (I need to wear the brace while cycling or working out any way except swimming.)

The only item of interest at my 4-month check-in is a minor discoloration (bruise-like) on the inside of my knee, roughly corresponding to the site where the carticel was implanted. The discoloration ebbs in intensity, seemingly depending on how intense my use of the knee was that day. The doc didn't know what this might be - he'd never seen this phenomenon before, so we didn't take any action or curtail my workouts. Has anybody else had this discoloration?

Your host @ the Arc de Triomphe in Paris, November, 2011. Can you guess which leg has the brace on?

To celebrate, I flew off to France, Scotland, and London. (OK, it wasn't a celebration so much as a necessary work trip.) I did manage to spend time walking around some of these great places (and I'll post some picture highlights in a subsequent post).

I was fully mindful of my knee health, and always intend to let my knee determine the duration and pace of touring. However, I completely forgot the advice I received post-surgery: always stay ahead of the pain.

I would set off from my hotel with the intention of stopping mid-walk for a stop at a cafe or Starbucks no more than every hour or so. I was pretty faithful to this approach, but inevitably, I'd get tired before I found a cafe, or have to walk a bit further than expected. In retrospect, I should have had the intention of stopping every 45 minutes, but be prepared to go an hour (if it takes 15 more minutes to find a cafe), instead going an hour, and sometimes struggling to an hour and 15 minutes.

I found myself being able to go less and less far between breaks, but typically didn't realize it until my limits were only 10 minutes or three blocks between rests. (At one point, I was down to resting between blocks.)

To make matters worse, my overnight rest cycles were about the same as they had been at home. I should have budgeted an extra hour on touring days.

There was a mild knock-on effect - I found myself lagging in a few of my business meetings. One meeting - scheduled to go two hours - rant to almost 4 hours. I didn't realize it at the time, but I was absolutely pooped by the start of hour 3, and found myself getting a little bit silly in the meetings. Hopefully I didn't make the wrong impression.

The other negative is that once I made it home, I took three days off from my physical therapy routine. Not good, but definitely necessary.

A couple of observations/ideas/advice for Carticel patients:

-Very important: get a good seat on your flights. I scored an exit row seat with plenty of legroom for both long flights. I really didn't have any problems in-flight or post-flight as a result. If I hadn't scored, I probably would have been worse off, and being squeezed into a seat with less legroom would have certainly gotten in my head.

(Incidentally, my doc offered to write a prescription for business class seating, but as a consultant, the price of the trip came right out of my pocket, and I wasn't about to pay $3,500 more to make the trip.)

-Don't underestimate the walking mileage that you'll rack up in the airports. Always, always take the elevator if available - that walk to the gate or bus stop is always longer than you think.

-Consider taxi rides instead of subway/metro travel. I tended to get all-day passes for the metro/Underground, which certainly encouraged me to ride between tour destinations, instead of walking (which was smart), but eventually you'll have subway journeys with long walks to transfer, or plenty of stairs. The taxis are definitely more expensive but an investment in knee health.

-Dial down your touring ambitions and be smarter than me when it comes to knowing your limits. By the time I got back to my hotel room, all I could do was crash for the day or night. I lucked into hotels with good fitness facilities (including in one case a pool), but never did any PT as I was too pooped.

-Do NOT backpack - used wheeled suitcases! The last thing you need as a recovering patient is 25 or 35 more pounds of stress on your knee.

-I am extremely thankful that my trip wasn't a month earlier (month 3). I don't think I could have made it.


My final verdict on the trip will be determined by my strength tests tomorrow, when I'll learn if I grew stronger, or atrophied while traveling. For now, though, it is off to the gym for me!


I hope this update is helpful. As always, please feel free to ask me any questions in the comments section or via email.

Tips and advice for Carticel patients to be

While Carticel and A.C.I. (autologous chondrocyte implantation) surgery is now ~15 years old, there is still a lack of non-Genzyme originated patient info out there. I've previously covered some of my experience online:

Knee surgery update (initial knee surgery & cartilage harvesting)

Carticel patient experience (pt 1 of 3)

Carticel patient status update (@ week 6) 

To anyone considering or just beginning their Carticel experience I’d offer the following points for consideration:

Tips & Insights

1)   1) Your most valuable item is your green, ring-bound rehabilitation guide. There’s a very good chance that your rehab center has never seen a Carticel patient. There’s a good chance as well that your therapist will see “A.C.I.” and think “ACL.” To combat this, share your green rehab guide guide, or better yet, get more than one copy so that you have one too.

2)   2)Get clarity on how your protocol changes with time and progress. Surprisingly, there’s not a ton of precision on when a patient progresses into a different protocol. Can you sleep without a brace at week 4 or is it week 5? Do you get off crutches at week 6 or 8?  It’s fluid – get firm, clear instruction from your doc/your doc’s physician’s assistant/physical therapist.

3)   3) Just like protocols were sometimes confusing, I sometimes got confusing and contradictory advice on simple things, like how to put my leg brace on. For instance, I was first told directly that the brace should be snapped in order from top (pelvis) to bottom (ankle). I found that the brace would tend to drift down my leg. Four weeks in, my physical therapist (my 4^th different one) suggested a different order: when putting my leg brace on, it seemed that snapping the braces on in one particular order produced the best results. Mine has 4 ‘bands,’ which I’ll label from my ankle to my pelvis 1 through 4. I got the best results locking #2 first, followed by #1, #3, then finally #4.

4)   4) Since the Carticel cells are frozen once fully grown in anticipation of shipping for surgery, the scheduling of the implantation surgery is elective. I considered surgery during the winter holidays, or perhaps in the quietest part of winter, with the thought that these times were most conducive to sitting around, and basically doing nothing more demanding than rehab. I ultimately chose to operate immediately (July, after a late March harvesting of cells) mostly due to an interest in getting better sooner rather than later, but it had a benefit that I hadn’t anticipated: it was the time of the year to wear shorts. As I realized, long pants aren’t really a good option for the first month or so post-surgery, so consider having your surgery during a warm month.

5)   5) I’d suggest relying on a walker instead of crutches for the first month or so. Walkers are a bit slower and less mobile, but far more stable. I’d say that while on crutches, I’d have at least one “whoopsie” incident a day where I might have to apply significant (if momentary) pressure on my sore leg. Not fun. In contrast, walkers are very, very low risk. Also: you can drape a bag over an arm of the walker in order to carry books & gizmos with you.

6)  6) Get an iPad. You’ll be spending LOADS of time just sitting around recuperating. You’ll be in need of mindless distractions or entertainment.  I picked up a second-hand iPad for ~$225 and it was worth every penny during my recovery. I also used the iPad to gauge my health: I play backgammon and pre-surgery was beating the computer probably 3 out of 4 times on average. During the first ~3 weeks, my success rate against the computer was ~50/50, with some prolonged periods where I lost more than half my games against the computer, corresponding (on reflection) with the times where I was most exhausted or in pain. I’m happy to report that I’m back to normal, winning ~75% of my games.

Carticel patient status update

Today I am celebrating the 6-week anniversary of my A.C.I. surgery. I am currently mobile via crutches and walker. I am wearing a brace during the day, but sleeping without one. I attend physical therapy 3X/week, and exercise at home on the off days according to plans made by my therapist.

There is very little pain, and at this point, very little need for painkillers. I pop 2-3 ibuproferen tabs 2-3X per day, and that’s it. I also ice my knee a few times a day.

My biggest problem to date has been sore muscles in my “good” leg. Twice I’ve pulled calf muscles when hopping – once climbing stairs, and once hopping without crutches. The second time I pulled the calf muscle was accompanied by an audible “pop.” I’ve talked to my PT about it, and she says that the soreness is temporary, and that I ought to stretch daily and before relying on a cold muscle.

The current expectation is that I’ll be off crutches permanently in ~4 weeks, with initial crutch-free re-training beginning in 2 weeks.

Unfortunately, this means I lost a race with my 1-year old niece to see who would walk first. I challenged her in early July, and just this week she took her first repeated steps.

Other than that, things have been good.

Please feel free to send me any questions about my Carticel experience via email here. 

Carticel patient experience

One of the highest traffic pages on my blog has been my posts detailing my 2011 knee surgery(s) and recovery. Since those postings in March and April, respectively, I have had a second surgery on my knee to implant Carticel chondrocytes (in other words, to plant new knee cartilage like planting new grass sod.) 


By popular demand, then, here's the continuation of my experience and some tips/thoughts for anyone about to have or considering this surgery.


As a refresher/background: I'm an early 40's semi-athletic male who began experiencing frequent and serious knee pain in my left knee in the summer of 2010, most pronounced when distance running. My initial diagnosis was a torn meniscus, and I underwent directed physical therapy to strengthen surrounding muscles to compensate. 


Fast forward six months, and during arthroscopic surgery to debride the meniscus, my doc realized the true nature of my knee problem: a large amount of articular cartilage damage on my left knee. More details and pictures are here.




During the March 2011 (first) surgery, my orthopedic surgeon harvested some of my knee cartilage for a second procedure: implantation of new cartilage grown up in a lab from the cartilage harvested in March. This surgery for me took place in July, 2011 and I am now in the midst of recovering and following the Carticel post-op protocols.


My Carticel story begins just after my March surgery. My local orthopedist (Dr. Grant, of Charlottesville, VA) and his office and surgical teams were absolutely top-notch through my first surgery and recovery, but Dr. Grant suggested that my condition would benefit from seeing a specialist in Richmond, VA, Dr. Kenneth Zaslav.


I was lucky to find good care and treatment from Dr. Grant & team. My luck continued with the introduction to Dr. Zaslav: he's a rockstar in his area. He was one of the first physicians in America to perform the implantation surgery, so he's one of the most experienced, and he was the lead author of the defining academic study of such procedures (a study of ~150 Carticel patients over four years.)


Dr. Zaslav confirmed Dr. Grant's prognosis and suggested two possible courses of action:


1) periodic injections of Synvisc - a fluid that provides knee lubrication - though only for about six months before dissipating and thus requiring another shot. Oh, and the regular synvisc shots are fairly expensive and very serious, nasty shots.


2) implantation of Carticel tissue. (I'll use the terms 'tissue' and 'cartilage' in lieu of the more accurate term "autologous chondrocytes." Technically, what's implanted is a mish-mash of cells that by 9-12 months takes root and form cartilage.) 


Carticel has the advantage of a high permanent success rate (~80%), but is high-cost, and has a long and demanding rehab protocol.


I had already done plenty of research and was already leaning towards Carticel, and speaking with Zaslav increased my confidence in Carticel. Within days of the meeting, I had made my decision and set the wheels in motion. A tentative surgical date was set for early July (~8 weeks from my meeting with Zaslav). The next order of business was to get approval from my insurance company to cover a large portion of the therapy. Upon approval, word would be sent to Genzyme to begin growing my cells for implantation - a 4-6 week process.


Zaslav's staff is used to wrestling with insurance companies, and they took the lead on gaining approval from Anthem Insurance. Also heavily involved in this process is Genzyme. 


Unfortunately, this process - expected to take 10-15 business days - took ~5 weeks. (Apparently due to a paperwork snafu.) 


My biggest complaint from my entire Carticel expereince is from this period. The process and progress is not transparent at all. While I heard from my doctor's office through the process that approval was imminent and that there was no reason to change my impending surgery date, after the first ~3 weeks of waiting, I had little confidence in such a positive outcome. Not only did I worry about payment and surgical plans in flux, but I was very, very worried that my cells being grown by Genzyme could be hurt hurt in some way by a hasty growth cycle, impacting my ability to make a good recovery.


After all approvals were garnered, a rush of paperwork occurred. I think I paid full attention to the details, permissioning, etc., but the haste of the paperwork, the legalese, and the lack of hand-holding was a shock.


But, ultimately, we went forward on the original surgery date, with no restrictions. My cells were ready, and I was ready.


In my next post, I'll detail what came next. 

Knee surgery update

“When was your accident?”

I was in my 2-week post-surgical follow-up with my doctor (Dr. Grant)’s ace PA (physician assistant) Vince. He was reviewing pictures from my knee surgery, which was the first time that we had seen real images of my damaged knee.

“Accident? Huh?” I answered.

Vince explained that he was wondering what had happened to so colossally mess-up my knee. I realized what he meant because I had been asked it before. Nobody 40 years old should have this level of cartilage damage without being in some sort of accident.

“Oh, I wasn’t in an accident. But I played catcher for 30 years.”

Vince was startled, but managed to say “Really? That might do it.”

Vince did the 2-week post-op review, and I was lucky to receive rave reviews* – little swelling, good range of motion, and no infections or other complications. There is very little scaring and I’m allowed to resume normal activities “as tolerated,” except I must avoid high impact activities like running.

Though the surgery was a success, the reason for avoiding impact activities can be seen in some of the surgical pictures as seen through the arthroscope during surgery.

Originally, we thought that I had a simple meniscus tear prompting a couple of months of physical therapy to strengthen the surrounding muscles. A few months later, an MRI indicated a slight degradation of my articular cartilage. The pictures, though, showed twice as many areas of cartilage degradation, each many times larger than reported on my MRI.

 A little bit on articular cartilage, or chondyle: it’s the very slippery material on the front of the femur at the knee joint that allows smooth and easy bending of knees. How slippery? Cartilage on cartilage rubbing is 10X more slippery than ice rubbing on ice. The articular cartilage is ~4mm thick, and mine had worn to the bone, resulting in arthritis. Yes, I’m a 40 year old with arthritis, but hopefully not for long.

Knee parts: 

Copied from http://www.orthspec.com/articular_cartilage_injury.htm

Side view of a cartilage “divot:" (Click on any picture for a larger view).

 (Each white area is cartilage, each tan area is bone.)

To repair the “divots” in my knee cartilage, I’ll be going in for another knee surgery (autologous cartilage implantation) in a few months to have new cartilage laid into the gaps – like laying sod or filling a pothole. Just like after laying sod, I’m not allowed any movement for 6-7 weeks post-surgery that could rip up the newly laid cartilage.

Because the replacement cartilage will be frozen for shipment to Virginia, I can choose the schedule for the implantation surgery, so as to schedule when 6-7 weeks of downtime might be convenient. My two thoughts here are to either proceed as soon as possible (likely early June implantation, back on my feet by late July) or to delay until next winter, when I wouldn’t mind being couch-bound and unathletic for 2 months. What would you do?

* For the great 2-week review I have to thank my parents for taking care of me post-surgery and Move Better physical therapy for the post-op rehab.

MJH Outpatient Surgery & Dr. Grant: two thumbs up!

Last week I had arthroscopic surgery performed on my left knee by Dr. Grant of Albemarle Orthopaedics at the Martha Jefferson Outpatient Surgery Center. I am now 5 days post-surgery and stunned at the ease and quality of the surgery, care, and facilities.

I first went to Dr. Grant in early fall 2010, though the injury was noticeable months before (I stupidly ran three triathlons on it before giving in to the pain.) I found Dr. Grant's practice through blind luck: I had been calling for an appointment at UVA's Sports Medicine practice, but after three days without a callback to schedule an appointment, I did a search online for local orthopaedists and stumbled onto Dr. Grant's web site.

My initial diagnosis last fall was a torn meniscus - a straighforward injury with non-surgical therapy - and was prescribed a cortisone shot and physical therapy at Move Better Physical Therapy in order to strengthen muscles near the meniscus to compensate.

The knee pain continued and a January cortisone shot had almost no effect. This lead to an MRI for my knee, and the finding that I had a chondral displacement, specifically that I had a roughly 10mm x 10mm area of my chondral cartilage completely missing, with significant deterioration of the remaining cartilage. This injury is typical only in the elderly - it's an accumulated injury. At one point, I was asked if I had an injury that precipitated this, as I was very, very young for this diagnosis. I answered no, but that I had played catcher in baseball for approximately 30 years. The response: "That'll do it."

So I had an osteoarthritic condition which would only get worse with time, severely limiting my mobility, fitness, and quality of life. (No more running or biking for me.) Treatment options were 1) treatment with euflexxa (an injectable acid) to artificially lubricate my knee, 2) simple chondral debridement (arthroscopic clean-up of the messy cartilage. No  permanent improvement resulting, but likely less pain and greater mobility), 3) surgical procedures to regrow/replace cartilage (more on this later), or 4) full knee replacement.

I immediately ruled out the full knee replacement, and began researching option#1. Euflexxa was appealing, but had 2 problems: it only treated the symptoms (i.e. the knee problem never went away - it would just hurt less frequently), and each injection provided benefit for only 2-4 months at a time, meaning that I would become a Euflexxa junkie - also bad because Euflexxa is expensive.

So surgery was the answer. The options, were simple clean-up (chondral debridement - a clear preference, though it's long term benefits are debatable), micro-fracture surgery to encourage growth of new cartilage, the "OATS Procedure" (another, more intense way to encourage cartilage growth), or
autologous chondrocyte implantation (ACI).

ACI is an amazing surgery - a portion of the injured cartilage is collected then sent to a lab in Boston to be grown into a larger piece of cartilage for re-implantation. This procedure is still new and quite expensive, but ideal for "young, healthy patients with medium to large sized damage to cartilage."


An indication of my extreme interest in my knee health is that even though ACI and the other knee procedures are expensive, I never blinked an eye at the financial commitment. (ACI alone is $20-35,000k. I'm pretty sure that I'll end up paying 20% of the final bill, but it is definitely worth it.)

The unnerving thing about surgery is that the most effective treatment option can't be determined until the surgeon sees the injury up close - in surgery. Surgery involves general anesthesia, so I could not participate in choosing the treatment while Dr. Grant was operating on my knee. I was more freaked out by this than the notion of undergoing surgery (with all of its' risks) or being knocked out. I guess I like to be in control.

The day of surgery came, and while I was nervous, it was a fantastic experience from start to finish.

To begin with, I was instructed to mark which knee was NOT to be operated on - a low tech, but effective step. I also had to go 12 hours without food or water, which was darn hard.

Martha Jefferson's outpatient facility is just a few years old and modern in every way. Given the lobby receptionist, my intake felt more like was visiting someone's business offices than I was about to undergo a medical procedure.

The day unfolded as I had been told to expect - except where MJH and the team exceeded expectations. For example, I had been told that the recovery from anesthesia would take 2-3 hours. However, I was conscious and eating animal crackers 45 minutes post-surgery. Dr. Don Mathes - my anesthetist - was an absolute maestro - verbally walking me thru the procedure, then delivering me on the other side quickly and with absolutely no nausea or side effects.

Dr. Grant was fantastic (as expected) on the day of surgery, and received high marks from someone who would know - my Mom.

My Mom just retired from a 40+ year career as an OR nurse in an outpatient surgery center very similar to MJH and was able to appraise the MJH facility and team (excellent), and got her peer's appraisal of Dr. Grant prior to my surgery. (From one nurse to another, my Mom was pulled aside and told that Dr. Grant was excellent. (You'd be surprised how often the nurse appraisal is "that Doc isn't very good," or "Dr. ______ is the one you want to see." A nurse's appraisal is worth any 100 other reviews.)

I have nothing but high praise for everyone else who worked on me that day. I wish I had a full list of the team that worked on me, but unfortunately I can only go by memory (hazy, due to the anesthesia). The two additional names that standout are Maggie Lebo (who prepped me for surgery), and Judy, an R.N. who screened me and walked me through the procedures.

I'm now 5 days post-surgery and feeling great. I used crutches and pain killers for the first 4 days post-surgery, but I am fully ambulatory (though tender) and have already had 2 physical therapy sessions.

I am under orders to take it easy for the next month. (I haven't even tried to climb a flight of stairs yet) and won't be allowed to bike or swim for about three weeks. In about 10 days I will see Dr. Grant for the post-surgery analysis. My hope is that the chondral debridement (clean-up) will be enough to get me back to pre-injury health, but it is probably 75% certain that I will undergo an additional surgery in 2-3 months to re-implant the replacement cartilage (ACI.) Unfortunately this is going to mess with my cycling and baseball goals this spring/summer, but I know that I will appreciate my improved knee health in the long term.

I'll also increase my appreciation for the US health care system. Politicians keep creating one-size fits all healthcare solutions, but my improved knee health (and overall experience) is only possible (and available at a reasonable price) through specialization. Instead of an expensive hospital stay, I was in and out in ~2 hours, and was able to benefit from the expertise of an orthopedics specialist.

Political solutions like Obamacare are firmly aligned against specialist practices. For example, there are all kinds of regulations against physician-ownership of outpatient facilities, and intense regulation of outpatient competition through things like "certificate of need" legislation. (In Florida, for example, you can not open a new hospital or surgical facility unless the nearby hospitals sign-off that there is a need for additional surgical capacity. In practice, this squishes competition.)

This most often takes the form of a big hospital lobbying to stop the permitting of a specialized center, such as for heart surgery. Heart surgery is fairly profitable for a large hospital, but a specialized (focused) center will deliver better results at a lower price. The big hospital fears that eventually the focused heart center will take customers away, raising the fixed price of all of the healthcare they deliver (e.g. still paying for the costs of establishing their heart center.)

In much the same spirit, my therapy was only possible due to R&D incented by the American healthcare system and profit motive. Only ~10,000 patients have had my surgery so far, and this would not be possible without clinicians mindful of adopting new, advanced procedures (due to the pressure of market competition, rather than the status quo of nationalized healthcare), and my ACI therapy would not be possible without the R&D and regulatory effort by Genzyme (an American biotech company.)

The regulatory pressures (as from Obamacare) combine to make our healthcare more expensive and less effective as possible. There are additional dimensions to the US system that I experienced that will make for another post (for example, I was ~3 weeks from decision to surgery. In Canada or the UK, I'd be lucky to experience 3 months from decision to surgery), but suffice to say, I had an excellent experience with Dr. Grant, his team, MJH, and the US healthcare system.