Omakase

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. 

8 comments:

Kelley said...

Hi there :) I am anxious to hear about your surgery and recovery. I am having my Carticel implant on Aug. 9th. :) Kelley

Mike said...

Hi Kelley / Timmy G -
Did either of you move forward. I am in the same boat and trying to find any information I can. Please let me know how it went if you had it done. Would you do it again (probably too early to say I'm sure).
Thanks so much!

Unknown said...

Hi Mike-

I am at the end of week 6 post-surgery, so it is too early to say whether I'd do this again. (I'll know when I try to run, which is still a few months away.)

So far, everything seems on plan, so I'm hopeful.

One fact that I'll point out as you do your thinking: it isn't loudly pointed out (though it is in all Carticel technical material) that approximately 40% of all patients undergo a follow-on procedure (surgery.)

Im looking forward to pain-free use of my knee, so to me it is worth the chance, but if you are on the bubble, it is something to think about.

I'll add to my story & perspective online at my blog. Please follow me, and feel free to post any questions you have, which I will try to answer.

Good luck.

Tim

Unknown said...

Kelley-

Hope your surgery went well.

Tim

Jajisee said...

Thanks for your great blog, Tim. Rebecca put me onto this. I've had bi-lateral quad tendon ruptures, now articular cartilage debridement, now facing knee replacement at 65. I wrote a similar blog on my BLQTR experience. So this was GREAT. Most helpful. Thank you, Jim Clawson.

Emalee said...

Hey! Thanks for the post I hope you are recovering well. I already had the 1st surgery and my surgeon spoke to genzyme on the phone and told them to "Go ahead with the process." I have now been waiting for about 16 days to hear from the insurance company. I was wondering if the genzyme lab waits for insurance approval before growing the cartilage or if they start growing it right away. Do you know? Blessings to you.

Emalee said...

Hey! Thanks for the post I hope you are recovering well. I already had the 1st surgery and my surgeon spoke to genzyme on the phone and told them to "Go ahead with the process." I have now been waiting for about 16 days to hear from the insurance company. I was wondering if the genzyme lab waits for insurance approval before growing the cartilage or if they start growing it right away. Do you know? Blessings to you.

Unknown said...

Hi Emalee-

My understanding is that the process of growing up the tissue sample from the first surgery goes forward independent of the insurance timeline.

In my case, insurance approval happened only 2-3 weeks prior to my 2nd surgery, which would mean that my sample had to have been growing prior to the insurance decision.

(That's my recollection, which could be flawed, but I DEFINITELY had anxiety a few weeks before the second surgery from the insurance approval not yet having come through.)

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