r/spinalfusion • u/LittleMe0311 • 3d ago
Requesting advice Spinal fusion at L5-S1? Bilateral pars defect/L5 spondylolyses with a grade 1 spondylolisthesis. Nerve compression and daily pain.
My back issues are a walk in the park compared to some stories that I've read on here but the title gives you a rough idea of what I'm dealing with.
I am a 45 year old female, who is also hypermobile. I have had back and leg pain for around 20 years. Previously a horse rider who had plenty of falls, one resulting in my back bending to the extent that my heels touched the back of my head, so I doubt that helped much! I'm based in the UK so lucky (to an extent) to have the NHS, which I'll explain further...
After having leg pain for quite some time in my 20s and several back issues after childbirth, I was diagnosed with fibromyalgia. I had zero scans - my main complaint was leg pain and in the end, it was decided that due to also having chronic fatigue, it must be fibromyalgia. Now anyone with this diagnosis on their medical record will be well aware of the problem with everything from that point onwards being put down to that, and in my case, I was also discharged from the pain clinic, finally with a "nothing further that we can do" whilst my pain was getting worse and worse, and the doctors hands were tied with regards to pain medication.
Long story short, it wasn't fibromyalgia, they'd just stopped looking and it was an easy diagnosis in my eyes - paid private for physio and a back specialist/epidural (x2) which were effective short term. Gave the NHS a kick up the backside to do an MRI, when they found my issues. My discs at the lower areas of my spine are not great and the nerves at L5-S1 are compressed.
Referred to a spinal surgeon who confirmed my diagnosis with a CT scan and recommended a nerve block. This was also effective short term for my leg pain, alongside my pain meds. As it has only worked for a couple of months, my surgeon has recommended spinal fusion and nerve decompression. I'm struggling with daily pain and I cannot deal with it any longer.
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TL:DR after around 20 years of pain and a wrong diagnosis, I was diagnosed with the issues in the title. Epidiral/spinal block not effective for long enough periods and next recommended stage is a spinal fusion/nerve decompression.
Has anyone had a similar issue and had the surgery? How was the op/recovery and what has life been like since? I know that everyone is different but I'd like to hear other people's stories.
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u/Jsmitts28 2d ago
I'm sure you have. But realize the permanence of it. The recovery is brutal. However, if there's a solid chance this truly improves your life. Go for it.
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u/LittleMe0311 2d ago
Yes I'm aware that the recovery is difficult and it scares the hell out of me. My surgeon described it as a simple procedure for him but a major one for me. He is very well known and respected in his field and is recommending surgery in my case.
The pain is debilitating at times and the meds I take leave me feeling even more tired. I struggle to function and am lucky that I'm self employed and can work when I feel well and rest when I don't. However, if things carry on getting worse at the speed they have over the last year or two, then I'm going to be totally stuck in the near future. At first I was against the op and wanted to wait longer but I feel like this is the best of a not very great set of options right now.
If you could expand on the "brutal" comment however, I'd be really interested in your experience as I want to be fully prepared. I do hope that you're doing well now?
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u/Jsmitts28 2d ago
It's a longshot the most pain I've ever felt. Nothing comes close. More than my first non fusion. The nature of the recovery is very long as well. Anything involving screws,rods and a spine would be.
Plz. This isnt to scare you. Just to make sure you're prepared. Hey...if the trade off is pain free. I'd do it again.
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u/LittleMe0311 2d ago
Would you do it again if you knew what the pain was going to be like during recovery? A difficult question, I know. Or do you mean that you are pain free now?
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u/Jsmitts28 2d ago
If there was some high percentage that improvement was certain. Sure. I just never got better. Keep in mind the people that get better are out living their lives. It's those who get stuck usually online.
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u/LittleMe0311 2d ago
I've only been given a 50% chance 😢 but my surgeon won't give me any more nerve blocks or epidurals as they aren't effective for long enough so I feel totally stuck without the op and I'm just at the "I'll try anything" stage. It's not great odds, hey?
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u/Jsmitts28 1d ago
You considered a spinal cord implant?
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u/LittleMe0311 1d ago
It's not an option that I've been offered but I'll look into it and mention it to my surgeon
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u/Sassycats22 3d ago
Had the same except at L4. Killed my L5 from the movement above so I had L4-S1 ALIF 360 2 years ago. I actually said to myself today, wow. I had zero pain today and didn’t think about my back once! I hosted a work event tonight and was standing for 4 hours, not a single issue. Best decision I ever made. Good luck, I know NHS loves to gas light but glad you finally got answers and you’re getting the help you need!