I decided to keep this post intact. While much of the data below is out-of-date, I feel this post provides an anchor — a moment in time — to ground us in our story. Rewind thirteen years…
This was written two weeks after my second surgery with Dr. Zimmerman at St. Mary’s.
Me crafting a missive, sitting at my computer. All illustrations are done by me mostly with my left hand, as my right side was impacted by my stroke.
September 20, 2006
Backstory summary
I'm 37 and I have Degenerative Disc Disease. I'm currently pursuing Artificial Disc Replacement surgery, a treatment new in the US that's been available in Europe for 20 years. There are several different artificial discs either currently available or in trials; only 2 are FDA approved. Those that are FDA approved are often not covered by insurance because they're still considered "experimental."
There are not many super-experienced ADR surgeons in the US since the treatment has been limited to clinical trials until recently, so not many surgeons have had the opportunity to develop deep expertise in the procedure. Both of the artificial discs that are FDA approved (Charitè and ProDisc) are approved for single-level use only. If you need more than one disc replaced, you can't be treated in the US unless you can find a clinical trial that includes multi-level replacements to enroll in. If you need more than one disc replaced and you can't find a trial, don't want the specific prosthesis the trial is studying, or don't meet the inclusion criteria, your only choice is to go overseas; typically, to Germany. There, the most experienced ADR surgeons in the world — and some hacks more than willing to take your money — regularly operate on Americans. Taking this route means likely having to pay cash since most US insurance companies won't cover overseas, "non-emergency" treatment. This is my predicament.
So far I've had 3 disc ruptures, 2 surgeries, and more spinal injections than I can count. I've seen 9 doctors over the course of my 7 years of treatment for this condition. I've tried physical therapy, aquatic therapy, yoga, pilates, chiropractic, massage, and traditional pain management. I've taken vicodin, oxycontin, methadone, dilaudid, ativan, naproxen, skelaxin, valium, ambien, lunesta, lyrica, promethegan and more for my pain and related issues. I've discovered I'm allergic to morphine and demerol...the hard way. I've endured countless hours of medication-induced nausea and vomiting, and missed something like a total of 8 months of work due to my pain. I've lost all sensation in my left shin and half of my left foot. I'm in some level of pain all the time, and am guaranteed a severe flare-up if I'm at all active (which in my world means vacuuming the living room — forget about going to the gym). I hate taking drugs but I have to. Almost everything I take makes me sick.
This is all to avoid spinal fusion, the alternative to ADR and America's current "Gold Standard of care" for DDD. Spinal fusion consists of removing the remaining disc material (usually the annulus and whatever nucleus remains), inserting a bone graft (usually taken from the hip) into the disc space, then installing rods and screws to keep the whole thing together. There are many types of fusion and the hardware varies, but this is the basic premise: if we fill the disc space with something else then attach the vertebrae above and below to steel rods thus removing mobility, the spine will stay in place and the disc space will be retained. This treatment usually reduces a patient's pain, but at the cost of her mobility. It's a hard sell, especially to young patients still active.
The downside of fusion, besides the mobility loss, is that it transfers the load that the missing disc(s) would have borne and places it on the adjacent one. More often than not, that adjacent disc will rupture due to the extra load. If that adjacent disc is already torn and leaking (as in my case), add a level to your fusion. Imagine what this means to a 30-something former athlete who needs 3 levels fused.
DDD seems to travel up the spine. One of the goals of ADR is to interrupt its progress, effectively capping degeneration at the replaced level. Because ADR restores normal disc height and the prostheses bear a normal load, adjacent discs are not adversely impacted.
Not all ADR patients have good outcomes. The surgery is risky, due largely to the anterior approach (through the stomach). The biggest risk is vascular, since the surgeon has to move the organs aside to get to the spine without damaging anything. Also, low back pain is often assumed to originate from a disc or discs, but it's hard to confirm the actual source. It could be facet joint pain, nerve pain, or disc pain. Some ADR patients may not have discogenic pain pre-surgery, which means disc replacement won't resolve their pain. And the longer a DDD patient waits to have ADR, the more likely they are to suffer from excruciating "distraction pain" after the procedure. DDD causes discs to desiccate or lose their moisture, thus losing their height. The body then adjusts to this new situation. The longer it stays that way, the more it hurts when new discs are inserted and the space is regained since the procedure stretches the spine and surrounding tissues.
Despite the risks ADR is my best option. No conservative treatment helps. Neither of the surgeries I've had were meant to address my back pain, nor have they helped it. I won't consider spinal fusion, and I can't face the idea of living the rest of my life the way I feel right now, or worse. ADR patient satisfaction rates (though subjective and perhaps not that meaningful) are high. For some, it brings immediate relief. For others, it means a return to active living. For me, it's the best and really the only option I have.
If ADR is so great and it's been around for two decades, why hasn't the FDA approved more prostheses, or multi-level replacements? And if the treatment works, why don't more insurance companies cover it?
Great questions.
Welcome to the American healthcare system.