heatherParticipantJune 16, 2022 at 1:24 pmPost count: 2
I have had a very strange case from the start and it’s a long story, so I’ll try to be brief. For about a month, my large L5S1 herniation was misdiagnosed as ischial bursitis or SI joint problems. I was having extreme pain at my left sit bone and couldn’t sit for any period of time without extreme discomfort. When I finally had the MRI at the end of March 2022, it showed a 13mm extrusion at L5S1, but the cauda equina nerves looked normal at this point. Every day, I was getting measurably worse – my pain spread through my lower back, left hamstring, pelvic floor, and then eventually to my right sit bone and hamstring as well, though not as intense as the left side. I could only walk with crutches and eventually could put no weight on the left leg. By the time I had the appointment to go over my MRI results on April 1, I had the most terrible pain in my left sit bone and hamstrings that made me nearly immobile and barely able to speak as I was sobbing through strong pain. Every small movement of my body would send huge shockwaves of intense pain through my pelvis, starting from that left sit bone and radiating all over my pelvic floor, inner thighs, hamstrings, and buttocks. Even turning my head or taking a deep breath would trigger these paroxysms of pain. I have had sciatica for years but this felt much different and was easily 10/10 pain. When I arrived at the doctor’s office, my outpatient follow-up quickly turned into a surgical consult, and when I realized that my bladder was numb and my genitals and inner thighs were tingling, I was sent immediately for surgery. I had a hemilaminotomy and microdiscectomy at L5S1 for partial cauda equina syndrome on the afternoon of April 1, 2022.
I am now coming up on 11 weeks post-op. Recovery has been a mix of good and bad days, but each week, I have gotten a little bit better. The tingling has mostly stopped, though it flares up sometimes, and my strength has gotten better with physical therapy. My bladder also seems mostly recovered. I had some major flare-ups of pain around 1 week post op, 3 weeks post-op (bad enough to prompt a follow up MRI – surgical site looked beautiful, no reherniation), and 6 or 7 weeks post op. Each flare was easily tied to an increase in activity and quickly settled down after a few days. They also all felt relatively similar – an increase in sciatica of the left leg, a little bit of pelvic floor pain, and/or some cramping of the buttocks and hamstrings. The pain flares usually stayed around a level 4-5 out of 10, only creeping up toward 7 during the third week when we thought I’d reherniated. They also all settled within 3 days.
Well, last week, on the 10-week mark exactly, I began a new flare-up that is not like the others, and I am still in the thick of it 6 days later. Last week, I went back to full-time status at work, as I had been doing part time from week 5 onward. I also spent some time cleaning out some closets on Friday, and hauling out some piles of old blankets, and then spent 7 hours in uncomfortable chairs on Saturday for my children’s dance recitals. Ever since then, I have been having strange pains which feel a lot like “echoes” of what I experienced prior to surgery. The intensity is much lower and the pain is not as “reactive” – it doesn’t get worse when I move or change positions – but it also is not getting better. The pain moves around. Sometimes it’s down my inner thighs, sometimes it’s in my buttock/glutes, sometimes it is in my hamstrings, or sometimes it may be on just the left or right side. I have increased back pain also, though this is not as bothersome. I am also having a resurgence of paresthesias in my inner thighs, intermittently. I don’t think it’s getting worse from day to day and it does usually feel better in the morning after a full night of rest, but it always returns as the day wears on. The intensity varies from 0 (first thing in the morning) to about a 6 (late afternoon or sometimes at bedtime).
I am absolutely certain I’ve reherniated, but I desperately hope I am wrong. My neurosurgeon put me on a Medrol Dosepak, which I started yesterday, but I don’t think I’m seeing any improvement yet. Although the pain is not severe, it also frequently exceeds a level I can live with.
I guess what I want to know is this – at this point in time, 11 weeks post op, after feeling great for 3 or 4 weeks, is it even possible that this is just a flare-up of inflammation? I can’t seem to find any stories online of people who have had flare-ups this late in the game that are as intense or long-lasting as this one, where it turned out to be “just inflammation.” But on the other hand, my situation is also unique – not only did I have slow-onset cauda equina syndrome, but my symptoms at presentation were also somewhat atypical (my pre-op pain was not burning sciatica but rather just what felt like the worst pulled muscle you can possibly imagine, at the sit bone and radiating outward).
Every day that this drags on, I am less and less optimistic and more and more certain I am going to end up on the OR table again within the month. Please let me know if you have ever seen a CES patient with this much pain at 11 weeks post-op, who went on to have a successful recovery.
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