I badly herniated my L5-S1spinal disc in late 2014. I had not yet been formally diagnosed by a geneticist with EDS at that point, but had it in my medical record from other doctors. We did a laminectomy in January of 2015, and within a week, I had re-herniated and was leaking all over my nerves again. Because our discs are primarily collagen, once we tear them, someone with EDS rarely heals naturally. If I didnt have EDS, the normal procedure would be to have my vertebrae fused so that it would take away pressure from the damaged disc and allow it to stop herniating. With EDS however, I need to have the disc completely removed because it will just continue to do nerve damage if left in place, and my vertebrae need some sort of artificial cushion to replace the disc we are removing. Luckily, there is a procedure for this called Artificial Disc Replacement (ADR), Total Disc Replacement (TDR), or Lumbar Prosthesis. The benefit of this procedure is that they put an artificial disc in place of my damaged one that works similar to a ball bearing/ cushion, and that I wouldnt have a loss of mobility or flexibility in that area of the back. Not having the reduced flexibility makes it so that there isnt adjacent pressure put on the next set of vertebrae! I had to go to the geneticist to confirm the EDS was the issue with the healing, and my doctor and I started trying to get approved for an artificial disc.
The bad news is that Aetna considers this procedure to be experimental. I have multiple orthopedic spinal surgeons that have written into Aetna explaining that if I had the fusion performed it would be setting me up for a fusion of the next set of vertebrae from the adjacent pressure (and that would be a continuing domino effect), and that a disc replacement should be the only course of action that should be done to correct my current spinal condition. Aetna has denied all levels of appealing their decision of not approving this procedure. They say that although it has been FDA approved since 2006, they consider it too experimental and that we havent demonstrated enough medical necessity. We wrote a paper that spoke directly to their policy guidelines that had cases where people with multiple level ADR didnt have good recoveries, but people with single levels did, and how I was a single level replacement case and am even younger than the average patient in the case studies. Im a prime canidate for this procedure!
Has anybody heard of anyone with EDS getting a spinal fusion on the Lumbar (lower back)? How did it work out for them?
Has anybody heard of anyone with EDS that has been able to get approved for a disc replacement for the Lumbar?
Does anyone have any other recommendations?
Is it worth trying to take Aetna to court to get them to pay for a surgery that doctors say I need, is FDA approved, but the insurances private policy procedures deem Experimental?