Most people don't think about their SI Joint (Sacroiliac Joint-SIJ) but everyone has one SIJ on each side, right and left. More often occurring in women, one or both of those sides begins to experience dysfunction known as SI Joint Dysfunction. To put it mildly, it's a pain in the butt. Literally! Imagine that someone put a knife in your back to one side of your tail bone. Now imagine it's stuck there and you can't get it out. Every time you try to walk or put pressure on it, you are met with excruciating stabbing pain that stops you in your tracks. Suddenly you can't walk unassisted, if at all. You can't sit for long periods of time. Your heating pad is so much your best friend that you have burns on your back from it. You do everything you can to ease it. You attend all types of physical therapy (aqua therapy, traction, core strengthening). You go through every outpatient option that you have (Nerve blocks, Steroid injections, Radio Frequency Ablations), and though some of these methods work for some time, none are permanent in nature. You're simply buying time until your SIJ gives out again and you wind up back on crutches or bound to a wheelchair all while your legs and spine are actually still functional. You just can't stand the pain and sometimes the entire joint gives out and you can't walk on one side, or both, at all. You try to sleep but every position is uncomfortable to the max. Sometimes you just lay awake, scrolling through articles, looking for a solution to your pain.
And then one day! One glorious day! You find out about the SI Joint Stabilization surgery, but you also find out that your insurance will not cover it. So you wait, and you wait, and you wait. Until two years later you find out, supposedly, that your insurance company has decided to provide 'positive coverage' under some stipulations, for this surgery. You are sure that after the last seven years, that there is NO WAY you could not be approved for this surgery, but then...on your birthday you receive your first denial. You're crushed. Mostly because you weren't expecting it, and it hits you like a ton of bricks. You're emotionally buried under the rubble of your disappointment and frustration.
So you seek out the assistance of the SI Bone Patient Advocates. SI Bone are the creators of the Ifuse system for the fusion. Basically, laproscopically, through a 45 minute minimally invasive surgery, the surgeon drills three holes in the affected SIJ, and then implants three titanium rods into the spaces and the body does the rest. You fuse, and within a year or less, you stand a good chance of being as close to normal as you've ever been, or, BETTER! That's not to say that the fusion doesn't work for some. You are aware of the risks, but at this point, you're in so much pain that you just don't care anymore.
So, knowing that there is positive coverage, the doctors send in for the predetermination and you are shot down. The insurance company, whom we shall call Purple Cross, decides that because you suffer from Ehlers Danlos Syndrome, that you may not qualify for this life changing surgery. They also note your instance of fibromyalgia which has been deemed to not be a factor in this area of pain. The surgeon even advises them that it is well controlled with medication and is not severe enough to consider a factor. Still, they fight back. It is here when you begin to envision them as some evil mega power conglomerate. They are sitting in leather chairs, smoking cigars and laughing at all the sick people they're not going to help this year. They pay no mind to you, or the appeals or complaints that you file. They still go home and dive into piles of money like Scrooge Mcduck in his vault.
These advocates though...they are amazing. They call and speak to you for hours on end and keep attacking back at the insurance trying to push approval like a Trojan horse banging on the gate to the castle of approval. And so you wait. And waiting is the hardest part. The insurance takes their time reviewing. You have to wait yet another thirty days for them to decide if you are worthy enough to be healed. This has been my life for a while now. I've suffered from SIJ Dysfunction for around 7 years and am currently in and out of a wheelchair. I'm braced up, taped up, and equipped with ergonomic crutches. There is a heating pad at my desk, and CBD oil in my medical bag. I've tried lidocane patches and pain killers and NOTHING touches this pain that my insurance seems to be so casually ignoring. Under their instruction, we even repeated diagnostic injections and provocative maneuvers. A provocative maneuver is where they position your body to replicate the pain. I've shown positive to all testing for SIJ Dysfunction and I am one of the many being denied, for what seems like, the sake of being denied.
I recently spoke to someone who was post op one year. She is doing great! She also had to wait through three painstaking appeals, one of which was an External Appeal that finally got her approved. I'm looking forward to this but it seems so far off. It seems like it will never happen. But I know when things seem darkest, is when I must keep my eyes on the light. There is an end to this. This will happen, but it's going to take more strength than I've had to muster in a long time. It's pulling from all reserves and wasting all of my spoons. In short, your spoons are your energy and your warned not to waste all of your spoons, but I've been left with no alternative then to fight. Because in the end I'm fighting for my life. For the quality of my life. I'm not sure when insurance companies began to think that they know more than medical staff, but I hope in time this is not the case. I know I'm being fairly optimistic, but they say that the only constant thing in life is change. So change is coming. It's just a matter of when and if I'll be strong enough to face it. Mark my words...I plan to be.
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