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.