Considering L5-S1 fusion

Posted by slowgo @slowgo, Nov 27, 2023

I am 46 year old - athletic and active. Was diagnosed with Spondylolisthesis and pars defect 2 years ago after sudden onset back pain. I have seen 3 spine surgeons and tried physical therapy, steroid injections, nerve blocks, therapeutic massage, fascia massage, and most recently stem cell/PRP injections. Nothing has relieved the pain and unfortunately surgical fusion of L5-S1 is the only option left that I haven't tried. I have heard differing things from each surgeon. From get the surgery now and enjoy the rest of your life pain free - to put off the surgery until the pain is completely unbearable and incapacitating. I also heard differing opinions on what a fusion will mean as far as increasing my chances for needing additional fusions in the future b/c of the stress fusions put on the vertebrae above. It is very difficult to make decisions when I don't feel like there is a consensus with the information. My biggest fear is regret. Either regret that I do the surgery and open up pandora's box that I will suffer from for the rest of my life OR regret that I don't do the surgery and unnecessarily live additional years in pain.

Has anyone had L5-S1 fusion? If so, are you glad you did? Were you able to participate in the activities you previously enjoyed afterwards? Did you have to have future back surgeries as a result?

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@slowgo

I'm so sorry to hear you are not getting relief from pain after your surgery. Thank you for sharing your experience and advice.

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Thank you @slowgo. I hope your decision is successful for you. Unfortunately it seems nothing is clearcut in this area of medicine, it is very personal and luck of the draw on impact to one's body and how well the surgeon actually performs.

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@solom174

@dennymt I feel your pain. I also was very active pre-fusion and post I have been in very great pain from fusion with no end in sight. I was told originally I would be recovered in 4 weeks; and while I have no nerve damage, it is now over 5 months and no relief from the impact of the fusion surgery itself. It feels like I have a lump of cement in my spine, with rods sticking in it, pain everywhere around it in upper back, numb painful muscles around it, inability to lie on my back, and mobility and flexibility loss. Good luck is right.

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I had L5-S1 fusion a little over 6 years ago. I had injured my back after a ski fall. The pain increased over the next year. I was finally directed to a marvelous neurologist who put me on a cocktail of drugs (tramadol, gabapentin, diclofenac potassioum, and diazepam. It took me a few days to acclimate to the side effects of the drugs, but after that, I felt 100%
better, I was back to cycling 30 to 40 miles a week, hiking, and working around the house. I did have an occasional bad day when the pain returned (not as bad as the original pain). I wasn't satisified with what I had gained, so I was directed to an orthopedic surgeon who ordered another MRI (my third one in less than two years), Interestingly, he said that the scan showed spondylothesis at L5-S1 (even though previous scans revealed nothing of the sort). That was early in my pain journey, so what did I know? He recommended fusion. So, I said "go ahead". Surgery went fine. Four months later, I had more pain on my "good days" and worse pain on my bad days. If I knew then what I know now, I would have gotten second, even third opinions, and other radiologists to interpret the MRI images. No way I would have that fusion again. I am still much better off than many that I see on this site, so, I feel blessed for that.

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@heisenberg34

I had L5-S1 fusion a little over 6 years ago. I had injured my back after a ski fall. The pain increased over the next year. I was finally directed to a marvelous neurologist who put me on a cocktail of drugs (tramadol, gabapentin, diclofenac potassioum, and diazepam. It took me a few days to acclimate to the side effects of the drugs, but after that, I felt 100%
better, I was back to cycling 30 to 40 miles a week, hiking, and working around the house. I did have an occasional bad day when the pain returned (not as bad as the original pain). I wasn't satisified with what I had gained, so I was directed to an orthopedic surgeon who ordered another MRI (my third one in less than two years), Interestingly, he said that the scan showed spondylothesis at L5-S1 (even though previous scans revealed nothing of the sort). That was early in my pain journey, so what did I know? He recommended fusion. So, I said "go ahead". Surgery went fine. Four months later, I had more pain on my "good days" and worse pain on my bad days. If I knew then what I know now, I would have gotten second, even third opinions, and other radiologists to interpret the MRI images. No way I would have that fusion again. I am still much better off than many that I see on this site, so, I feel blessed for that.

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Hi I don't know if my situation is very similar but I have severe lumbar stenosis and after I walk and stand my calf muscles throb all night making sleeping difficult. The surgeons say I need laminotomy and then fusion or a spinal cord stimulator if I can't do the surgery.
I have an acquaintance who is in training for acupuncture and Chinese medicine who says I should try that for a few months. Any advice ?

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@annie1

Hi I don't know if my situation is very similar but I have severe lumbar stenosis and after I walk and stand my calf muscles throb all night making sleeping difficult. The surgeons say I need laminotomy and then fusion or a spinal cord stimulator if I can't do the surgery.
I have an acquaintance who is in training for acupuncture and Chinese medicine who says I should try that for a few months. Any advice ?

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Get more opinions about that spinal fusion stuff. I had one at L5-S1. Did nothing to help my lower back pain. Go ahead and try the alternative medicine. As long as it doesn't drain your bank account, what have you got to lose? I had a spinal cord stimulator that worked fairly well in reducing the pain for about 3 years. Suddenly, it just stopped working. The trial for the stimulator is fairly simple and will give you a good idea if it will help your pain.

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@heisenberg34

I had L5-S1 fusion a little over 6 years ago. I had injured my back after a ski fall. The pain increased over the next year. I was finally directed to a marvelous neurologist who put me on a cocktail of drugs (tramadol, gabapentin, diclofenac potassioum, and diazepam. It took me a few days to acclimate to the side effects of the drugs, but after that, I felt 100%
better, I was back to cycling 30 to 40 miles a week, hiking, and working around the house. I did have an occasional bad day when the pain returned (not as bad as the original pain). I wasn't satisified with what I had gained, so I was directed to an orthopedic surgeon who ordered another MRI (my third one in less than two years), Interestingly, he said that the scan showed spondylothesis at L5-S1 (even though previous scans revealed nothing of the sort). That was early in my pain journey, so what did I know? He recommended fusion. So, I said "go ahead". Surgery went fine. Four months later, I had more pain on my "good days" and worse pain on my bad days. If I knew then what I know now, I would have gotten second, even third opinions, and other radiologists to interpret the MRI images. No way I would have that fusion again. I am still much better off than many that I see on this site, so, I feel blessed for that.

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Thank you for this info. I am struggling with this decision and sorry for your experience. I can relate because I skied for 30 years, but I don't blame that for my back pain. Maybe I should. I think a surfing lesson at age 70 did me in. Or maybe gardening- this heavy flower pots are a challenge.

I am taking meds and getting injections. My meds are or have been gabapentin, prednisone, tramadol, tizanidine, naproxen, and Tylenol. Prednisone gave me Cushing Syndrome. Naproxen was discontinued when I ended up in the hospital with diverticulitis. I didn't like the tramadol and I started getting hooked on it, so I stopped it. I am still on prednisone because you have to wean off of it. Surprisingly, a max dose of Tylenol per day is effective. I use tizanidine in the evening when I know I won't be going out again. Gabapentin seems good, but I don't actually feel it working; its effect is subtle. Pain management is my main activity every day.

I have only talked to one surgeon so far who told me the recovery would be brutal and the surgery might not work. This message board has been helpful.

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@heisenberg34

Get more opinions about that spinal fusion stuff. I had one at L5-S1. Did nothing to help my lower back pain. Go ahead and try the alternative medicine. As long as it doesn't drain your bank account, what have you got to lose? I had a spinal cord stimulator that worked fairly well in reducing the pain for about 3 years. Suddenly, it just stopped working. The trial for the stimulator is fairly simple and will give you a good idea if it will help your pain.

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Thanks for the info about the SCS. Which one did you have and did it help with throbbing calf muscles ? Or leg pain

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@maryanne7

Thank you for this info. I am struggling with this decision and sorry for your experience. I can relate because I skied for 30 years, but I don't blame that for my back pain. Maybe I should. I think a surfing lesson at age 70 did me in. Or maybe gardening- this heavy flower pots are a challenge.

I am taking meds and getting injections. My meds are or have been gabapentin, prednisone, tramadol, tizanidine, naproxen, and Tylenol. Prednisone gave me Cushing Syndrome. Naproxen was discontinued when I ended up in the hospital with diverticulitis. I didn't like the tramadol and I started getting hooked on it, so I stopped it. I am still on prednisone because you have to wean off of it. Surprisingly, a max dose of Tylenol per day is effective. I use tizanidine in the evening when I know I won't be going out again. Gabapentin seems good, but I don't actually feel it working; its effect is subtle. Pain management is my main activity every day.

I have only talked to one surgeon so far who told me the recovery would be brutal and the surgery might not work. This message board has been helpful.

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None of the surgeons were candid enough to say that the recovery would be brutal and the surgery might not work. So that's good to hear. I am stuck between getting Spinal cord Stim or trying more alternative methods like Acupuncture and chinese herbs at a training center that is supposed to be very good.

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@annie1

Thanks for the info about the SCS. Which one did you have and did it help with throbbing calf muscles ? Or leg pain

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I had the Medtronic’s unit. I didn’t have calf pain. Lower back pain and burning feet. Along with my meds, the SCS dropped my pain from a 7 down to about a 3.
Only doing the SCS trial cam tell you if it will help your pain. Worth a try.

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@annie1

None of the surgeons were candid enough to say that the recovery would be brutal and the surgery might not work. So that's good to hear. I am stuck between getting Spinal cord Stim or trying more alternative methods like Acupuncture and chinese herbs at a training center that is supposed to be very good.

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Keep us posted. My sister keeps telling me to get acupuncture. People I talk to about it, tell me it helped but they did not sing its praises. I read a long time ago that the Mayo Clinic says that there is no evidence that it works. Maybe somebody here has some info on that.

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thanks for your reply. I did have acupuncture many years ago when my stenosis first started, with a Chinese recommended practitioner and actually it didn't help then. I just happened to meet someone who's in training at a Chinese medicine School that's has a good reputation and she kept telling me I should try it for about three months in order to see some change. But I don't know if I want to wait three more months since I've been dealing with this for six years now. Anyway thank you for your response.

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