Saturday, July 30, 2011

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. 

With my new friends on the Great Wall of China

With my new friends on the Great Wall of China
Click to go to my online photography

World sun clock

Uncommon Man's Creed

"I do not choose to be a common man. It is my right to be uncommon -- if I can. I seek opportunity -- not security. I do not wish to be a kept citizen, humbled and dulled by having the state look after me. I wish to take the calculated risk; to dream and to build, to fail and to succeed. I refuse to barter incentive for a dole, I prefer the challenges of life to the guaranteed existence; the thrill of fulfillment to the stale calm of utopia. I will not trade freedom for beneficence, nor my dignity for a handout. I will never cower before any master, nor bend to any threat. It is my heritage to stand erect, proud, and unafraid, to think and act for myself, to enjoy the benefit of my creations, and to face the world boldly and say, "this I have done." All this is what it means to be an American." -- Anonymous