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My SI Joint Fusion

NickManNNickMan Posts: 4
edited 03/18/2015 - 3:16 PM in Sacroiliac (SI) Joint Problems
I've found these forums so valuable to me, especially for someone with similar problems or wondering what to expect, so I thought I'd start posting my experience. I'm recovering from an SI Joint fusion right now, day 13, and I'm having some small (I hope) complications, so I want to give a first hand story if it may help you.
12 years ago I bent over, I was constipated for the first time in my life, and without using my abs to hold myself together, I felt a snap/pop/ping. I limped a little the next couple of days, then on the 3rd woke up with horrible pain down my leg (sciatica). I want to keep this all short, I'll try not to go into how some doctors or nurses (dropiing an open needle on the floor and then injecting me! etc.) messed up here and there, or didn't treat it aggressively or diagnostically enough at the time or how frustrating the system is--so here's a sped up version, and it's still LONG:
pain meds, oral steroids (which helped a lot at first but as the dose lowered so did the effect), then an MRI that showed L5-S1 hernia. We tried epidurals--7 or 8 in 2/3 years time. One I THINK (12 years ago) seemed to work when the doctor said he "went a little higher", but only oral steroids ever helped. We did a discogram, which seemed to confirm the pain. Tried decrompression--helped 10-20%? (Eventually I had microdiscectomy years later with small results (20% relief?)). They had me on some steroids (eventually dexamethsone) the first year or so and I ended up with an osteomyelitis MRSA infection which took months to figure out and I almost died, and when I moved home from CA to ME I finally got it cleared up when a year later we found out I got Avascular Necrosis in my femoral heads (from steroids), so hip replacement on left and decrompression saved the the right.
Over the next 9+/- years, the "sciatic" pain would also shift to the left side.
3 years ago I finally got an Intrabody L5-S1 fusion. Beforehand, I described that if I rolled over in bed, or some other action, I would feel a snap-pop-jolt and then pain would flare up (not immediately, but within the hour). The fusion didn't help. It was a TOUGH experience. I was still getting the snap-pop-jolt (like when your jaw pops, but in my lower back). A year or so later I was doing really well for 3 months and it all started again. That's what would happen for 12 years--2/3 months of the year I'd be normal. I don't know if that's relevant.
So I thought I was stuck. Same pain as before the lumbar fusion. No pain meds--I don't want to be on any medication and those especially are a problem nowadays. Then I found info on SI Joint dysfunction. I asked if I could get an N-MRI, but instead we had an injection done with steroids and lidocaine into the joint. I had 100% pain resolution for about half an hour. We repeated it for my neurosurgeon, with more photos, this time no IV of meds for my own clarity, and the same: half hour of complete relief. It seemed diagnostic, so, instead of the neurostimulator (TENS unit) I went for the fusion to FIX it.
The surgeon went minimally invasive, 2 screws with the outer casing for bone growth--similar to the iFuse system (made by Apple?). Post op recovery room he said he was really confident of placement, everything went well--use crutches only if I need them. The night of the hospital the pain was fairly high--it did feel like my back bone had been hammered and worked on. We had to wait for hours to get a room due to the previous MRSA. They gave a lot of fentanyl, oxycodone and morphine. It's a controlled attack, as they explained. Muscle pain was minimal, but the swelling was high over the next 2 days. My right side butt was twice it's normal size. I had a lot of numbness in my ankle and foot, and obviously needed crutches because weight bearing made pain considerably worse.
The follow up a couple of days ago made them question the placement of the screw, due to the L5 numbness, so we (I say we, because the patient still has to do a lot of legwork and scheduling--have an advocate if you aren't use to this stuff)--we arranged an EMG test and he ordered a quick dose of prednisone, hoping this is just from edema and swelling. They prednisone helped a little with the swelling I THINK. Opposite to my expectations, my SI Joint area seems to be more hot and inflamed (I have no fever, I don't think we're dealing with infection), and the numbness in the foot is turning into burning and pain. I still have the "waking up from falling asleep" limb pain in my hamstring and sciatic butt pain. I haven't had any snap-pop-jolts at all yet, though. A good sign.
I've got the EMG tomorrow. It will confirm my numbness etc, but I don't know how that will confirm the screw placement. They may "back the screw out" as a fix. I'd still like the N-MRI I requested before surgery, which to my layman internet knowledge, shows WHERE NERVE IMPINGEMENT ORIGINATES, but I (we) felt the injection pre-surgery told us everything we needed to know. And it's EARLY.
SO: I just wanted to confirm to any of you--and I will keep you updated--that THIS CAN BE A LONG ROAD. DON'T EXPECT INSTANT FIXES. BE PREPARED, RESEARCH, AND HAVE AN ADVOCATE WHO IS INFORMED TOO. Doctors, nurses, PA's--everyone involved wants to fix you, but they are only HUMAN and this is one of the most complicated and difficult things to fix. You want to get back to life, back to work, back to helping people--but this is just the way it is. And that "quick fix" surgery, or medication, may permanently make things worse, I'm hoping, still, though, that this is right and it's just going to take some time. And watch what you eat. All this bed rest has made my weight go from 190 to a 240-290 norm. That doesn't help.
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Comments

  • I plan to watch how it all goes, so thanks for the post. I am scheduled for the iFuse implants surgery to fuse my right SI. It's scheduled for 25 Aug. good luck with your post op recovery.
    Sympathetic fellow back pain sufferer
    Scheduled for iFuse Rt Sided Fusion Late Aug 2015
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