It was early September in 2006, just after I had the injections (that did not work). During the discussion I had with Dr. Zimmerman, way back in the summer of June 2005, I learned I'd have to leave the US for multi-level disc replacement. That’s when I started researching German surgeons and hospitals.
The first I found was Stenum Hospital, just outside Bremen, Germany. I contacted their US spokesperson and through him got the names and numbers of some local patients who didn't mind being contacted. Most of them were happy with their outcomes, though I was amazed at how little research some of them did prior to their surgery. At the same time, I'd also found stories by several patients who'd had botched surgery there, and discovered that some of them might even take legal action against the surgeons and the hospital. A little more digging confirmed their reputation was horrible.
Dr. Zimmerman and I discussed the idea of going to Germany and he was supportive but cautious. He pointed out that ADR is big business overseas, particularly in Europe where they've been doing the surgery for 20 years. He'd never heard of Stenum, but he said: "There are plenty of people over there who'd be willing to give you whatever procedure you want, for the right price." He pointed out that a doctor overseas is unlikely to have the same level of investment in your outcome that your local doctor will — a valid point. I asked him for the names of surgeons he regards highly, and his list started with Dr. Wolfgang Berger*.
I returned to my research and quickly discovered the ADR Support discussion forum, a fantastic resource and the doorway to a community of people pre and post-ADR surgery sharing information and providing support to one another. I lurked on the board for months gathering data and reading old threads, looking for the stories of people who'd been operated on by Dr. Berger, and those who'd successfully gotten their US insurance carriers to cover surgery abroad — another battle unto itself. Everyone who spoke of Dr. Berger did so with the utmost respect, mentioning his warmth and real compassion. He was clearly regarded as the best. Another surgeon many patients spoke highly of was Dr. Jakob Strasser*, not as experienced as Dr. Berger but described as a man of equal warmth.
The ADR Support board also led me to Mark Mintzer, an ADR patient who had gone on to create a consultancy, Global Patient Network, to help others connect with and present their cases to surgeons abroad. He even accompanied patients overseas and advocate for them during their stay. Mark had developed a deep expertise in all the prostheses, procedures, studies, surgeons, and alternatives available to ADR patients. I began to gather my medical records (it took nearly three months), then called Mark. He created an online profile for me, including a synopsis of my situation, a chronology of my back pain, treatments, procedures, my films (x-ray, MRI, CT scans) and their accompanying reports, downloaded all of my files, then uploaded them up to a private server. Shortly after that, Mark presented my case to both doctors I'd chosen (Berger and Strasser). And the wait began.
At some point during this process, Dr. Zimmerman raised the possibility of fusing my L5-S1 vertebrae and just replacing L4-5, which would allow for him to do the surgery here in San Francisco. I wouldn't have to go through those torturous plane rides, or hand my fate over to a doctor I've never met. It sounded appealing when he mentioned it, but it would only have been possible if my L3-4 could handle the added load that the fusion below it would create. To determine this, we had to do a new discogram. We scheduled the discogram but before the appointed day arrived, my L5-S1 re-ruptured and I had to have a discectomy. Dr. Z said he'd look at my L5-S1 and if it looked very unstable he'd fuse it while he was operating on me, but it looked okay so he didn't. But we already knew from my last discogram (over a year ago) that my L3-L4 disc was torn and leaking... So I doubted this path would materialize as a viable option.
In the meantime, two things washed over me in a wave of realization:
1. If you're going to have your spine re-engineered, who better to do it than the German people, known so well for their technical engineering prowess? (Yes, I drive a VW, but that’s beside the point.)
2. If you're going to have your spine re-engineered, why would you have the surgery performed by anyone other than the most experienced surgeon in the world?
Even if it turned out that I could have the surgery locally with Dr. Z — whether one-level fusion and one-level replacement or two-level replacement — I didn’t want to do it. I knew he was one of the most experienced ADR surgeons in the US, having performed ~400 replacements, and I understood even the most experienced surgeon could make a mistake or encounter a complication, but I didn’t choose him.
I didn’t think I could look myself in the mirror X years down the road, and know that I didn't go to the best, most experienced surgeon I could find. If I were to have any kind of a negative outcome, wouldn’t I always wonder What If?
*Doctor names changed for privacy.