[jessmith07]

My Name is Jess, I'm 35 years old, 5'8" and relatively active...I have had no accidents to cause my back pain, but have been diagnosed with Degenerative Disc Disease. I've been dealing with back pain on and off for about 12 years, since shortly after the birth of my second child, and it's been chronic for the past 3-4 years. My disc at L5/S1 finally herniated sometime early 2008 (shown on an MRI, but it wasn't relayed to me), and I was scheduled for surgery to trim the disc away from the nerve. In the meantime, I found a new medication that effectively blocked the nerve pain (Topamax), so I cancelled the surgery and began walking 15-20 miles per week, going to the chiropractor 2-3 times per week, inverting on an inversion table 4-5 times per week, doing 100+ sit-up every morning, and doing lower-body strengthening exercises, all in the hopes of healing that disc. What wound up happening was, the disc got worse, the medication lost it's effectiveness, and the disc at L4/L5 began rapidly failing as well. By August 2008, I was in so much pain, all of the above came to a screeching halt. I could barely walk, couldn't sit for more than 30 minutes at a time, couldn't stand for more than 10 minutes at a time, and every time I moved while sleeping, I was jolted awake with excruciating pain, so needless to say, I wasn't sleeping very well. So I finally agreed to reschedule the surgery. In September 2008, I had a lamanectomy, which was a success, and after a few months and some physical therapy, the nerve pain finally went away. I knew that I would probably eventually need a disc replacement at some time in the future, but we were really hoping that this surgery would get me through for a few years until the surgeons in the US has more experience. But 6 months post-op, I was still in pain, and that's when my neurosurgeon finally told me that the discs themselves could be the source of my pain...which was news to me! That's when we really began discussing ADR (actually he wanted to do a fusion, which I adamantly refused), and I found out that in the US, I could only get a single level done, and that my surgeon, nor any other surgeon in the US, had much experience in the field of ADR. Well, I was in no mood to be a guinea pig, and I knew that our insurance would cover us outside the US, so I started doing research, and after MANY long hours, I finally found Dr. Bertagnoli in Germany, one of the best spine surgeons in the world. I sent him all of my tests and info, and he and his team accepted me as a patient.

Then, I went to my insurance company to make sure that they would cover the procedure, and I've been denied, first because they said it wasn't FDA approved, then once I showed them it was, they denied it again, there wasn't enough evidence to support the effectiveness of the prosthesis. So, I sent them a bunch of studies, and we're currently in round 3.

Anyway, that's my story. My husband is ready to pull the money out of our retirement account and just pay for the surgery, but I'm not willing to do that. My husband and I were planning a trip to Paris in June, him for business, me tagging along for pleasure, and we purchased my ticked several months ago with our "miles" from our Mileage Plus account, before all of this talk of needing an ADR procedure. So, my trip for pleasure has morphed into a trip of medical necessity; I'll fly into Paris, then take a "hop" into Munich. United has expressed a willingness to work with us on moving the dates, but time is of the essence in getting the insurance company to approve this, because as the dates for my flight get closer, I'm afraid that United's agreeability to work with us may wane. Right now, my doctor has tried me on a new medication, Arthrotec, which is helping, so I am getting some relief. Before that, I was just suffering, as I hate taking the narcotics, and would only take them when I was desperate for relief...a couple of glasses of red wine before bed helps too (we make our own, and it's Yummy!)

The only other thing I can think of is to hold out until open enrollment in December and switch to Blue Cross/Blue Shield (I've been told by other people that they'll cover ADR), and try this again next year. The only problem with that is, there will be more out-of-pocket expenses incurred, unless United will let us push my flight out that long, which I doubt, as we won't have enough "miles" to purchase another ticket, and unless we wait until June, when my husband will need to make his annual trip to Paris, we'll have to buy 2 tickets. But, it's much better than pulling the money out of the retirement account I suppose.

Some ideas that I'm currently pursuing to get the insurance company to pay is trying to find someone in the State Department or the Foreign Service who has our same insurance who has been successful in getting the insurance company to pay, and then going to the state insurance board, and getting quotes to from American doctors for a 2-level fusion in the hopes that the fusion procedure in America is more expensive than the ADR procedure in Europe, then I can appeal to their wallet. My husband also has some folks at the Office of Personnel Management looking into this because BC/BS pays for this procedure, so they are going to try to put some pressure on the insurance company to provide the same services to customers of the Foreign Service Benefit Plan.

We don't take "No" for an answer very well...