If you’ve spent any time on my blog, you know that I am very glad I had a minimally invasive SI Joint fusion. You also know that it was very difficult for me to pull the trigger on actually going through with the surgery. It’s human nature to want to cling to what is familiar rather than to risk the unknown, even if it means staying in a state of chronic physical discomfort. Still, surgery is not a decision to be taken lightly. At this point in my journey, here are a few things I would tell anyone considering a trip to the operating room.
At some point you’re going to have to break away from the herd, do your own research into your particular pain conundrum, and then stand by the conclusions you come to. This is not an easy thing to do. I want to be clear that I could not have gotten to where I am without the herd. The herd can be a wellspring of good information (it definitely was for me), but at some point we have to stop looking to others for answers and giving away all of our power. No one is more invested in your health and healing than you are. No one besides you is going to take the time to fully understand your journey, every nuance of your experience and take all of your needs into consideration. Sometimes the herd you have to break away from is the prevailing medical mentality about SI joint dysfunction. Sometimes it will be your friends or family, and their opinions. And sometimes you’ll have to break away from the other people who have SIJD, and what they have chosen to do. Resist the temptation to superimpose their answer over your problem. When it comes to making decisions about SIJD treatment, at the end of the day you’re a herd of one.
Give up the idea that an SI joint fusion will fix every little ache and pain. In fact, it won’t fix every big ache and pain either. But if you do truly need the surgery, it will in all likelihood help that problem. I do know people who’ve had the surgery and it almost completely resolved their chronic pain. I am very happy for those folks, but it doesn’t turn out that way for everyone. Don’t look at surgery as the holy grail that you will find in Shangri La, after arriving there on a magic carpet (okay, I’m being dramatic here, but you get the point. Don’t hang every hope you have on the idea that a surgeon’s knife will solve all of your problems. It probably won’t. But it may significantly improve your quality of life, like it has mine.)
Do absolutely everything you can to make sure the SI Joint is one of the major players in your pain problem. MRIs, CAT Scans and X-rays don’t typically serve as definitive diagnostic tools. Some doctors will find those radiological studies helpful, and may see things that help them diagnose it. But for the most part, they’re relying on three things: provocation tests, fluoroscopic diagnostic injections and ruling out other lumbar/hip-related issues. After all of my tests and research, I ended up much like a jury might in a court trial: I believed, beyond a reasonable doubt, that a hypermobile SI joint was causing a lot of my problems. But I was never 100% sure, and I dare say that implicating the SI joint is rarely a 100% proposition. If you want to read about how I arrived at my own conclusions, you can read about that process here and here.
Don’t take a shortcut to surgery. Try non-surgical solutions first. I spent a LOT of money and time trying to solve my SI joint problem non-surgically. Do I regret doing all of that? No. Do I wish I’d found someone to validate and diagnose the severity of my problem sooner? Absolutely. But I don’t think I would’ve had surgery unless I’d tried all the non-surgical treatments first. By the time I got to the operating room, I knew it was truly my only hope for getting better.
Refuse to be a leaf on the healthcare river. You cannot afford to be passive. Many of the failed surgery stories I’ve heard have gone something like this:
I had chronic, debilitating back pain.
I picked a random doctor that was listed on my insurance.
I trusted him implicitly, without getting a second opinion.
I trusted him implicitly, without researching SI joint problems thoroughly.
I trusted him implicitly, without vetting him as a competent, experienced doctor/surgeon.
After I had surgery, I learned that there were other surgical options.
After I had surgery, I learned that my surgeon had very little experience with SI joint issues or SI joint surgery.
After I had surgery, I learned that it was my hip, not my SI joint.
Don’t let anyone cut on you until you’ve looked at your problem from all angles, and weighed all the diagnosis/treatment options multiple times. Pick your surgeon wisely. You owe it to yourself to be your own private investigator.
Pray. I realize this may not sit well with those who aren’t “religious.” If you happen to be one of those people, I’d say, “meditate.” Open yourself up to something beyond your own five senses. Ask for guidance, if not from God, then from the universe, or the stars, or your ancestors or the collective goodwill of the people who care about you. Whatever you call it, here’s the bottom line: hold space for answers that come from somewhere other than your own intellect.
Consider the opinions of others, but give your own gut the last word. There’s an abundance of people who have very strong opinions and will state those opinions as absolute fact. Many of them will warn you that you’re headed to Doomsville if you don’t follow their advice. Just because they’re sure they know doesn’t mean that they do. If after doing everything above you still feel like your gut is telling you to go one way, go that way. Shut yourself off from those whose fear or lack of knowledge might try and sway you. Minimally invasive SI joint fusion is a very new field. In many ways the jury is still out on it. Don’t be surprised when others react negatively to it, even professionals. I have a very dear friend who has a PhD in Physical Therapy, and she was against my having surgery (and I know she had my best interest at heart.) I did it anyway. And I’m glad I did.
Prepare to unravel your body after surgery. It’s not an open and shut thing. If you really need SI joint surgery, your body has been compensating like crazy. It needs help to retrain muscle memory. It needs help to let go of old patterns. Give it some time to heal. I am in the midst of this process. I am almost 12 weeks post-op and I am not 100% pain free. But the low back pain that has plagued me for 30 years is about 90% gone. (Notice I didn’t say my pain is 90% gone. I have other things going on besides my former SI joint hypermobility.) But the difference this surgery has made in my quality of life is pretty radical. Now I am working with a hands-on physical therapist to hopefully hit the reset button on a normally functional musculoskeletal system.
Whichever way you’re leaning, do not let fear be your guide. I have been on both sides of this equation. When my doctors told me in the 90’s that a lumbar fusion was my best bet, I was afraid that if I didn’t do it, I’d be in excruciating pain for the rest of my life. In other words, it was a major temptation to lunge at surgery out of fear. I am so very glad I didn’t do it, not because I think lumbar fusions are all bad. My lumbar spine just wasn’t where my pain was originating! Conversely, once I did all my research, had all the tests done and found the doctor I felt comfortable with, I was afraid to have the SI joint fusion surgery because I was terrified of the outcome. What if I ended up worse off than before? For me, I reached the point to where I felt reasonably certain that surgery was my best move. And to go through with it I had to cast off the fear that would’ve kept me suffering in perceived “safety.” Fear is never a good navigator. Choosing a course with fear in the driver’s seat is not in your best interest. Ever. Find another driver.
Would I subject myself to a minimally invasive SI joint fusion again? In a heartbeat, as long as the same neurosurgeon was doing the same procedure I had three months ago. Beyond that, I’d have to go through a whole ‘nother process to determine whether or not I’d do something else. Fortunately, I don’t have to do that. Now I’m focusing on coaxing my body back into the cohesive movement machine it once was. Way back when. It’s hard for my mind to remember what that was like, so why should I be surprised when my body has a hard time remembering, too? Today my recovery is grounded in three P’s: Patience. Perseverance. Faith in the Process.