Sacroiliac Joint Dysfunction :: My road to surgery

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I’m still not 100% sure I’m doing the right thing. That’s scary to admit four days before surgery. But from what I understand, nobody goes into a minimally invasive sacroiliac joint (SIJD) fusion 100% sure it’s the best course of action. For many of us, it’s the only course of action we have left.

 

Several times over the last few weeks I’ve awakened in the middle of the night doing instant replays in my head about the last 12 months. In my previous post I chronicled everything I’ve done to try and get relief from my SI joint-related pain. You can hit the link in the previous sentence for details, but I’ll summarize by saying that I’ve tried pretty much everything but radiofrequency ablation and platelet rich plasma. And I haven’t just tried them once. I’ve been to more than a dozen doctors, four chiropractors, three physical therapists, four acupuncturists, 30+ various massage therapists, six months of prolotherapy, two personal trainers, three oriental medicine clinics, two nutritionists, a yearlong stint with a Feldenkrais practitioner, five years of yoga and a partridge in a pear tree. I’m sure I’m forgetting something, but it’s a story that’s been 30 years in the making.

 

I find that I’m poised to defend myself when I tell people that I’m going through with the surgery. First, there are inevitably a few folks who feel compelled to tell me that they have the approach that will save me. I wouldn’t dream of equating my struggle with cancer, but I do think I’m feeling a tiny bit of the frustration cancer patients must feel when everybody and their dog decides to be a self-appointed expert. If you want to speak into my life, listen to my story and show some respect for my journey thus far. Then I will listen to your opinion, and might even take it to heart. Otherwise, not interested. It blows my mind how many people sling advice around without knowing the first thing about a person’s circumstances.

Rant over.

So here’s how the process went: After my father died in April 2015 I vowed to turn my attention back toward myself and find some help for my increasing pain. I started by talking to a physical therapist I trust and asked whom I should see about SI joint issues. He recommended a well-known orthopedist and so I made an appointment and we did an SI injection with Marcaine and steroid. The day after the injection I had about an 80% reduction in my pain that lasted for three days. It was amazing.

 

At our follow-up appointment he recommended fixation, a procedure known as iFuse. I really liked the doctor but his office was a nightmare to deal with (he even admitted this.) And I wasn’t sure yet how I felt about iFuse, so I vowed to do more research. For the next couple of months I read everything I could get my hands on about SIJD diagnosis and sacroiliac fusions. Even though I showed positive on the provocation tests and had a positive injection result, I still wanted more in terms of diagnosis. I know me. I wasn’t going to feel good about surgery unless I a) did absolutely everything I could to be as sure as possible that my SI joint was a major player, and b) found the right doctor for me.

 

So I started scouring the Internet to find out if there were any other doctors anywhere who were doing more than injections and provocation tests to aid in diagnosis. (Most doctors agree that MRIs and CAT scans don’t adequately show anything that would firmly implicate the sacroiliac joint. Mainly, the doctors I went to wanted them in order to rule other things out.) I spent hours and hours gathering clues about other possible avenues. I came across a Facebook post where a neurosurgeon named Charles Harvey mentioned he was using sacroiliac joint arthrograms to diagnose SIJD. So I started researching arthrograms, talking to people who’d had them on other joints, and read and watched everything Dr. Harvey had done regarding the sacroiliac joint. He was a spokesman for iFuse and was about to present a study he co-authored about minimally invasive sacroiliac joint fusions. I came away from all of my research feeling like he was super honest, down to earth and had his head fully in the SI joint game. So I flew to Illinois to see him, and to get an arthrogram.

 

It ended up being a good decision for me. He was just as I imagined he would be: present and thorough. My arthrogram revealed that the dye was escaping from my SI joint, both medially and laterally. Dr. Harvey said that was an indication that the joint capsule is disrupted, and that some of the ligaments were torn or stretched. He also did a CAT scan and found mild SIJ degeneration on the left side, and mild to moderate on the right side. There was also a bone spur on the right side. He recommended surgical fixation. And I must say that if I’d decided to go the iFuse route, he would’ve been my guy.

 

While all this was happening, I was still doing intense research on the three types of minimally invasive sacroiliac joint fusions I had heard the most about: iFuse, Zyga and SI-FIX. I actually had a phone conversation with one of Zyga’s reps, who was super helpful. I have also been in contact with several folks who are very happy with the outcome of their Zyga surgery. The closest Zyga surgeon to my home was either three hours away in Houston, or about five hours in Tyler. I researched those doctors and didn’t come away feeling terribly motivated to go see them (that doesn’t mean they’re not great… I’m just a person who relies a lot on her Spidey Sense.) I didn’t rule Zyga out, but temporarily turned my attention elsewhere.

 

To make sure the pain wasn’t coming from my hip (which can mimic SI joint pain) I saw a second hip specialist. He, too, ruled out my hip. By this time I was thoroughly convinced that an SI joint fusion was my logical (and only) next step. I just needed to decide on a procedure and a doctor. The only one left to investigate was a method pioneered by a Montana neurosurgeon, Carter Beck. I’d heard from several people who’d had his SI-FIX surgery and they all gushed about how great both the procedure and the doctor were. For some, that would be enough to go on. But I’m not one to jump on bandwagons. I liked that he had pioneered a posterior approach, or at least his method of a posterior approach (iFuse and Zyga fixate laterally, sideways through the glute.) I watched his video and researched his procedure as much as I could. (He has no marketing machine, so info was scant.) I finally decided that the only thing left for me to do was to go to Montana and meet him face to face, to give my intuition a chance to weigh in. After that, I’d make a decision.

 

When I finally made it to see Dr. Beck, I wasn’t looking for a diagnosis. I just wanted to ask questions about his approach, and discern whether or not I felt he was trustworthy. I felt like he was. After looking at my MRI while I was sitting right next to him, he raised concern over my L5/S1 facet joint. I told him I’d had it injected in the nineties, and that I thought I remembered that it didn’t help. I also told him that I’d been second-guessing that experience. He asked if I wanted him to try and schedule an impromptu facet injection while I was there, so I could be sure I was remembering correctly. I agreed, and once again, the injection didn’t help at all. It was good to know.

 

When we finally reconvened (over the phone) Dr. Beck jokingly said, “Well, you may have fleas and lice” which was just another way of his saying that I might have multiple problems (which I already knew.) But all diagnostic indications were pointing to my SI joint, and it was the less invasive of the two procedures (lumbar fusion is much more difficult to recover from.) Figuring that I’ve got to start somewhere, I decided to fuse my right SI joint and see if that took care of a bulk of the pain. I am under no illusion that this operation will completely fix me and that I’ll be forever pain free, tra-la-la. I have autoimmune disease. I have some facet degeneration. I am in my fifties. But if fixating my wayward SI joint will give me even a 50% reduction in pain, it’ll be worth it. I’d even take 25%.

 

So after much deliberation and prayer I went with door number three, not because Dr. Beck is supposedly the latest, greatest fad (as some have insinuated.) I selected him because I have researched the shit out of all this and have evaluated it in terms of my own personal circumstances. I don’t think he’s the Messiah. I think he’s a really intelligent, highly skilled neurosurgeon who pioneered an approach that doesn’t have a high profile track record. I’m well aware that I’m placing a bet here in terms of published data and sheer numbers. But I’m doing what I think is right for me — the posterior approach. I know of a lot of people who’ve done well with iFuse, Zyga, and even a straight screw fixation, but my gut was telling me to go posterior. I’ve learned the hard way to listen to that gut.

 

Of course I fear that I’ll regret doing it, but I’d be surprised if there’s anyone who went in to this surgery without that concern. However, I am not going in to this afraid. My eyes are wide open. For me it came down to either living with it, or having surgery. And because my quality of life has declined considerably, and I have exhausted all other options—many times over—I decided to go with the latter.

 

I’ll be flying to Montana this week on the 27th, having surgery on the 28th, and will be updating this blog about the experience as I go. Wish me luck.

If you’d like to keep up with my recovery, you can subscribe to updates at the top right corner of this page.

 

** Photo by C Watts, licensed under Flickr Creative Commons. No changes were made.