36M, 13 years of back problems — grade 1 L5-S1 ret
Hi everyone,
I’m a 36-year-old man, and I’ve been struggling with back problems for 13 years. My symptoms developed gradually. For a very long time, I wasn’t 100% sure whether all of my symptoms were caused solely by degenerative changes in my spine or whether there might be some additional underlying disease. Because of this, I also investigated rheumatological and infectious causes (including Lyme disease and its co-infections).
There were even attempts to treat me for both of these possibilities, because it turned out that I have had strongly positive Yersinia enterocolitica antibodies, which are still positive to this day, as well as a positive HLA-B27 test. Because of this, a rheumatic disease was suspected. None of these treatments made any difference.
For years, neurosurgeons were unable to say with confidence that my pain, and later the numbness, were actually coming from my spine. A breakthrough of sorts came this year, when I was referred for flexion-extension X-rays. They showed a grade 1 spondylolisthesis — more specifically, a retrolisthesis.
And I’m honestly shocked, because I started going through all of my old MRI scans, and it turns out that my L5-S1 retrolisthesis was already visible at the very beginning of my illness. None of the neurosurgeons ever pointed this out to me.
Unfortunately, this year has been terrible for me. My pain has become much worse, and my feet burn and go numb. I’ve been doing McGill’s Big 3 exercises for two months, but I feel like they aren’t helping at all. I’m starting to feel like surgery is my only remaining option.
I have another appointment with my neurosurgeon on October 26, but I wanted to ask you guys about my symptoms because I have the feeling that they are somewhat atypical.
My symptoms ALWAYS get worse in the evening. I can sleep at night, but by the evening my muscles are already so exhausted and my symptoms have become so intense that sometimes I can barely stay on my feet. The more physically active I’ve been during the day, the worse the symptoms are.
What’s strange is that movement itself has never really been painful. I don’t get sharp pain when bending forward, twisting, or lifting something. It feels like my spine always sends me the bill later in the evening.
Even on days off work, when I spend the entire day resting, I still end up suffering badly in the evening.
I honestly don’t know what to do anymore. I’m exhausted from living like this. At the same time, I’m afraid of surgery — afraid that it won’t change anything, or even worse, that it could make my symptoms worse.
Has anyone here had a similar experience? Does this pattern of symptoms sound familiar to you? I’d really appreciate hearing how it was for you.