Hi @cis and others who have had spinal fusion surgery. I'm considering a fusion at L5-S1, and I am interested to know more about real patient experiences with spinal fusion.
Surgeons generally say they do a lot of them, and they claim the success rate is quite good. So, I would like to hear more real patient experiences with spine fusion. My disc is mostly gone at L5-S1. Based on Xray, it's bone-on-bone. The remaining disc is bulging and pressing on the nerve. I had two decompressions at that location in 2006, which provided a little pain relief for a couple of years. Hence, scar tissue has formed to place more pressure on the nerve, along with the bulging disc.
In summary, I'm thinking about having L5-S1 fused, and I would like to hear about good and bad experiences to help me decide.
I have had the same condition of severe L5/S1 degeneration with calcified disc and bone on bone since the early 1990s. I was preparing to have Lumbar Spinal Fusion in 1993 when I saw a program on ABC 20/20 that said the screws used for the surgery were not approved by the FDA for lumbar fusion, and they were breaking off and causing paralysis in some. After that
I changed my mind. I think they have been approved by now.
I coped by taking Cox-2 Inhibitors for over 10 years which caused kidney disease. No one told me that might happen. Now I can’t take any anti- inflammatory meds. I have also taken Gabapentin for pain. I tried Lyrica also, but couldn’t tolerate it.
I had a lumbar MRI done at University of Michigan in 2011 for something else, and my Neurologist told me he didn’t think that L5/S1 was causing my pain. He told me that people with the worst looking MRIs often have no pain. And some of the ones that’s MRIs look the best have the worst pain. So an MRI doesn’t necessarily indicate a need for surgery, or that surgery will make the pain any better.
Over the years I tried many types of Physical Therapy and finally found an excellent PT in 2015 that discovered that my pain was actually from Sacroiliac Dysfunction and Piriformis Syndrome which were helped by several months of Manual Physical Therapy.
I also take 5mg of Flexeril twice daily. I have to be careful not to bend over and twist as it aggravates the problem. Also when standing I’m not supposed to put my weight mostly on one leg as it makes it flare up.
Manual Physical Therapy isn’t taught in schools, it is something that a PT learns afterward if interested. It is best to find a PT that mainly works with patients who have had spine or orthopedic surgery.
Hi @cis and others who have had spinal fusion surgery. I'm considering a fusion at L5-S1, and I am interested to know more about real patient experiences with spinal fusion.
Surgeons generally say they do a lot of them, and they claim the success rate is quite good. So, I would like to hear more real patient experiences with spine fusion. My disc is mostly gone at L5-S1. Based on Xray, it's bone-on-bone. The remaining disc is bulging and pressing on the nerve. I had two decompressions at that location in 2006, which provided a little pain relief for a couple of years. Hence, scar tissue has formed to place more pressure on the nerve, along with the bulging disc.
In summary, I'm thinking about having L5-S1 fused, and I would like to hear about good and bad experiences to help me decide.
Based on my experience, unless you are losing or have lost the use of your leg(s) or bowel/bladder function, I recommend you exhaust all other alternatives before having such a radical procedure done.
I had what was described to me as a simple hemilaminectomy to relieve boney pressure on my L5-S1 nerve root in March 2021. 95% chance of an excellent outcome. This was not the case.
I rehab daily and my leg/ butt pain is still worse than it was before the surgery. Most days I wish I had not undergone the surgery.
No matter what the surgeon tells you, spinal surgery is a BIG DEAL.
Everyone is different. Some have the desired result but the vast majority do not.
Aside from the risk of infection, the trauma to the nerves will be extensive and if you develop scar tissue around the nerves, prepare yourself for a life of agony.
In any event, recovery is LONG if you’re in good physical condition and much longer if you are not.
I can’t offer alternative suggestions but I can tell you to be very deliberate about this.
Surgery is always the last option.
I've had L4/5 discectomy (a piece of vertebrae was fused to my spine) , and while the "operation was successful," other issues evolved.
I also had a rare operation of grinding down osteopaths on the rear of my spine (throat) from the front to enable me to swallow.
I have several bulging discs, and often they resolve themselves if you can withstand the pain for long enough. Don't give in too soon.
I have had spasms in my left leg for twenty years, as the leg wants to awaken more fully (dead to all feeling for several months), or at least lets me know that it is not happy, at time it is brutal for hours, at other times it is brief, and mild; I never know when (usually at night in bed) to expect them.
I'm resisting advise for a L4/5 fusion to ease nerve pain from the compression. I want my body to heal from three recent procedures; yes I am considering the risk and the result of failure. Not much seems to be made of that possibility, but to each of us it is a serious consideration; can you live with failure vs. what you have nor?
You always know the "were there."
Be your own advocate, make your own informed decision.
Best of luck, feel better, and be well.
Based on my experience, unless you are losing or have lost the use of your leg(s) or bowel/bladder function, I recommend you exhaust all other alternatives before having such a radical procedure done.
I had what was described to me as a simple hemilaminectomy to relieve boney pressure on my L5-S1 nerve root in March 2021. 95% chance of an excellent outcome. This was not the case.
I rehab daily and my leg/ butt pain is still worse than it was before the surgery. Most days I wish I had not undergone the surgery.
No matter what the surgeon tells you, spinal surgery is a BIG DEAL.
Everyone is different. Some have the desired result but the vast majority do not.
Aside from the risk of infection, the trauma to the nerves will be extensive and if you develop scar tissue around the nerves, prepare yourself for a life of agony.
In any event, recovery is LONG if you’re in good physical condition and much longer if you are not.
I can’t offer alternative suggestions but I can tell you to be very deliberate about this.
Hi @timbeau. Thanks for sharing your personal spine fusion experience with me. I know your point about scar tissue is real because I have a lot of scar tissue at L5-S1 from two surgeries I had there in 2006, and it is compressing the nerve, along with the bulging disk.
I still have control of my arms, legs, bowel and bladder. It’s primarily leg pain that has destroyed my quality of life. Exercise, meditation, medication, hot showers and other things provide some small relief.
One doctor has suggested I trial a spinal cord stimulator. So, maybe I will try SCS before surgery. At this moment, pain medication is helping the most, but we all know opioids are a bad long term solution.
Thanks again for sharing your experience and words of caution.
I have had the same condition of severe L5/S1 degeneration with calcified disc and bone on bone since the early 1990s. I was preparing to have Lumbar Spinal Fusion in 1993 when I saw a program on ABC 20/20 that said the screws used for the surgery were not approved by the FDA for lumbar fusion, and they were breaking off and causing paralysis in some. After that
I changed my mind. I think they have been approved by now.
I coped by taking Cox-2 Inhibitors for over 10 years which caused kidney disease. No one told me that might happen. Now I can’t take any anti- inflammatory meds. I have also taken Gabapentin for pain. I tried Lyrica also, but couldn’t tolerate it.
I had a lumbar MRI done at University of Michigan in 2011 for something else, and my Neurologist told me he didn’t think that L5/S1 was causing my pain. He told me that people with the worst looking MRIs often have no pain. And some of the ones that’s MRIs look the best have the worst pain. So an MRI doesn’t necessarily indicate a need for surgery, or that surgery will make the pain any better.
Over the years I tried many types of Physical Therapy and finally found an excellent PT in 2015 that discovered that my pain was actually from Sacroiliac Dysfunction and Piriformis Syndrome which were helped by several months of Manual Physical Therapy.
I also take 5mg of Flexeril twice daily. I have to be careful not to bend over and twist as it aggravates the problem. Also when standing I’m not supposed to put my weight mostly on one leg as it makes it flare up.
Manual Physical Therapy isn’t taught in schools, it is something that a PT learns afterward if interested. It is best to find a PT that mainly works with patients who have had spine or orthopedic surgery.
Hi @njh. I will look for a physical therapist who does manual manipulation. I agree with your observation that most PTs don’t use manual manipulation in their day-to-day practices.
Interesting that your problem was in your hips, not your spine. It’s a good reminder that I should find the source of my pain before agreeing to surgery.
I found that for several years, my PT involved E-Stim with ice packs or heat followed by exercise. My last PT told me that E-Stim is the equivalent of taking a pain med and only offers relief for a few hours. Since the source of the pain isn’t eliminated it returns shortly after PT is finished.
My Manual Therapy involved deep massage and mobilization for 6-8 weeks followed by exercise only after the pain was controlled. I also did exercises at home to strengthen my core and get my glutes to fire when I walked. Before PT I waddled from weakness in my core, hip flexors, and glutes, and my hamstrings were shortened from too much sitting.
I am so much better but still have occasional flares. With the exercises I was taught I can get the pain under control in a few days.
I would like to add a comment about my Physical Therapist. She started her career in a Hospital doing rehabilitation of trauma patients needing intense PT 3x a day. She later moved to one of the satellite sites in a nearby town. Not all PTs are equally trained or experienced. Do your research to find the best. Also she had 20+ yrs of experience.
Justin, I'm not seeing how to join a group. I had L4/L5 fusion with cage, 2 rods and 4 screws. The 28-year pain was gone when I woke up, which was disc herniation against the nerve; and the 2-year pain was also gone, which was after more than 2 decades the fore part of the disc degenerated to nothing and I had bone on bone pain that would snap, crackle & pop just sitting. Getting up and moving got to be unbearable. Since the surgery, I've had a new pain on my right side which feels like it's in the muscle maybe being aggravated by a screw head (they aren't rounded). Then about 2-3 weeks ago, I think I bent and twisted at the same time while feeding my poultry and got a serrated-type weapon knife twisting feeling, so very sharp and deep. I'm wondering if my movement could have caused a screw to fracture a vertebrae, or it was just a severe ripping of my muscle. I don't understand how my muscle will ever not hurt with a screw head against it or a scar, which would also press on the muscle when I move. Right now, I can't hardly do anything, and I have had chronic fatigue, chronic migraines, and anxiety/panic attacks for many years, which makes it impossible for me to make appointments (like for PT), since my husband works so many hours.
I'm wondering who else has post-op pain and if it will ever cease? I read where a young action biker fell and had a serious back surgery and was complaining the hardware pain, and since his fusion otherwise took, the hardware was taken out after 3 months. I'm not young, though. I'm sure that I feeling a screw head or sharp end of a rod irritating my muscle and moving only hurts worse.
The new post-op pain I wrote about finally got better, but I don't think the right side rod and screws are placed as good as the left. I can't feel the left at all, no matter what I do, even at rest after being active. I get tight muscle reaction more so on the right when I'm on feet too long at a time. My right hamstring still tightens up. Like standing at the kitchen sink bending forward just a bit (even though I'm leaning against the cabinet), causes a reaction after a few minutes. Doing just minor core strength exercises causes irritation where the internal scars must be on the right side. I'm always trying positions and movements that will accomplish the same, but anything for abs I feel after on my right side. I haven't had any bad events since like I wrote about 2 years ago with the twisting, but I'm more careful after recovering from that, and it took awhile. By spring 2020, I was moving better and doing more post-op as much as I am now. Fortunately, I can tolerate some pain, but wish I didn't have to. I can go a lot farther and complete more tasks if I alternate doing what I can sitting down vs. what definitely requires standing. I try to avoid bending over to pick anything up, like it's just way better to sit on a bucket and pick up a full bucket as I'm standing, which is what I learned to do for years before the surgery. Still no firm answers for my chronic fatigue after 3 GPs and 3 specialists (RA, sleep, migraines) running every kind of test, so I'm leaning toward it being all "in my head" -- literally being because of chronic sinus drainage that I discovered recently can relate to chronic fatigue, so I have an ENT appointment soon. If I could deal with the chronic fatigue I would probably be pushing my back a lot more.
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Hi @cis and others who have had spinal fusion surgery. I'm considering a fusion at L5-S1, and I am interested to know more about real patient experiences with spinal fusion.
Surgeons generally say they do a lot of them, and they claim the success rate is quite good. So, I would like to hear more real patient experiences with spine fusion. My disc is mostly gone at L5-S1. Based on Xray, it's bone-on-bone. The remaining disc is bulging and pressing on the nerve. I had two decompressions at that location in 2006, which provided a little pain relief for a couple of years. Hence, scar tissue has formed to place more pressure on the nerve, along with the bulging disc.
In summary, I'm thinking about having L5-S1 fused, and I would like to hear about good and bad experiences to help me decide.
I have had the same condition of severe L5/S1 degeneration with calcified disc and bone on bone since the early 1990s. I was preparing to have Lumbar Spinal Fusion in 1993 when I saw a program on ABC 20/20 that said the screws used for the surgery were not approved by the FDA for lumbar fusion, and they were breaking off and causing paralysis in some. After that
I changed my mind. I think they have been approved by now.
I coped by taking Cox-2 Inhibitors for over 10 years which caused kidney disease. No one told me that might happen. Now I can’t take any anti- inflammatory meds. I have also taken Gabapentin for pain. I tried Lyrica also, but couldn’t tolerate it.
I had a lumbar MRI done at University of Michigan in 2011 for something else, and my Neurologist told me he didn’t think that L5/S1 was causing my pain. He told me that people with the worst looking MRIs often have no pain. And some of the ones that’s MRIs look the best have the worst pain. So an MRI doesn’t necessarily indicate a need for surgery, or that surgery will make the pain any better.
Over the years I tried many types of Physical Therapy and finally found an excellent PT in 2015 that discovered that my pain was actually from Sacroiliac Dysfunction and Piriformis Syndrome which were helped by several months of Manual Physical Therapy.
I also take 5mg of Flexeril twice daily. I have to be careful not to bend over and twist as it aggravates the problem. Also when standing I’m not supposed to put my weight mostly on one leg as it makes it flare up.
Manual Physical Therapy isn’t taught in schools, it is something that a PT learns afterward if interested. It is best to find a PT that mainly works with patients who have had spine or orthopedic surgery.
NJ
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Helpful -
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1 ReactionBased on my experience, unless you are losing or have lost the use of your leg(s) or bowel/bladder function, I recommend you exhaust all other alternatives before having such a radical procedure done.
I had what was described to me as a simple hemilaminectomy to relieve boney pressure on my L5-S1 nerve root in March 2021. 95% chance of an excellent outcome. This was not the case.
I rehab daily and my leg/ butt pain is still worse than it was before the surgery. Most days I wish I had not undergone the surgery.
No matter what the surgeon tells you, spinal surgery is a BIG DEAL.
Everyone is different. Some have the desired result but the vast majority do not.
Aside from the risk of infection, the trauma to the nerves will be extensive and if you develop scar tissue around the nerves, prepare yourself for a life of agony.
In any event, recovery is LONG if you’re in good physical condition and much longer if you are not.
I can’t offer alternative suggestions but I can tell you to be very deliberate about this.
-
Like -
Helpful -
Hug
2 ReactionsSurgery is always the last option.
I've had L4/5 discectomy (a piece of vertebrae was fused to my spine) , and while the "operation was successful," other issues evolved.
I also had a rare operation of grinding down osteopaths on the rear of my spine (throat) from the front to enable me to swallow.
I have several bulging discs, and often they resolve themselves if you can withstand the pain for long enough. Don't give in too soon.
I have had spasms in my left leg for twenty years, as the leg wants to awaken more fully (dead to all feeling for several months), or at least lets me know that it is not happy, at time it is brutal for hours, at other times it is brief, and mild; I never know when (usually at night in bed) to expect them.
I'm resisting advise for a L4/5 fusion to ease nerve pain from the compression. I want my body to heal from three recent procedures; yes I am considering the risk and the result of failure. Not much seems to be made of that possibility, but to each of us it is a serious consideration; can you live with failure vs. what you have nor?
You always know the "were there."
Be your own advocate, make your own informed decision.
Best of luck, feel better, and be well.
-
Like -
Helpful -
Hug
2 ReactionsHi @timbeau. Thanks for sharing your personal spine fusion experience with me. I know your point about scar tissue is real because I have a lot of scar tissue at L5-S1 from two surgeries I had there in 2006, and it is compressing the nerve, along with the bulging disk.
I still have control of my arms, legs, bowel and bladder. It’s primarily leg pain that has destroyed my quality of life. Exercise, meditation, medication, hot showers and other things provide some small relief.
One doctor has suggested I trial a spinal cord stimulator. So, maybe I will try SCS before surgery. At this moment, pain medication is helping the most, but we all know opioids are a bad long term solution.
Thanks again for sharing your experience and words of caution.
Hi @njh. I will look for a physical therapist who does manual manipulation. I agree with your observation that most PTs don’t use manual manipulation in their day-to-day practices.
Interesting that your problem was in your hips, not your spine. It’s a good reminder that I should find the source of my pain before agreeing to surgery.
-
Like -
Helpful -
Hug
3 ReactionsI found that for several years, my PT involved E-Stim with ice packs or heat followed by exercise. My last PT told me that E-Stim is the equivalent of taking a pain med and only offers relief for a few hours. Since the source of the pain isn’t eliminated it returns shortly after PT is finished.
My Manual Therapy involved deep massage and mobilization for 6-8 weeks followed by exercise only after the pain was controlled. I also did exercises at home to strengthen my core and get my glutes to fire when I walked. Before PT I waddled from weakness in my core, hip flexors, and glutes, and my hamstrings were shortened from too much sitting.
I am so much better but still have occasional flares. With the exercises I was taught I can get the pain under control in a few days.
NJ
-
Like -
Helpful -
Hug
2 ReactionsI would like to add a comment about my Physical Therapist. She started her career in a Hospital doing rehabilitation of trauma patients needing intense PT 3x a day. She later moved to one of the satellite sites in a nearby town. Not all PTs are equally trained or experienced. Do your research to find the best. Also she had 20+ yrs of experience.
Nj
-
Like -
Helpful -
Hug
2 ReactionsIt has been a couple of years Since your post. How are you doing today?
The new post-op pain I wrote about finally got better, but I don't think the right side rod and screws are placed as good as the left. I can't feel the left at all, no matter what I do, even at rest after being active. I get tight muscle reaction more so on the right when I'm on feet too long at a time. My right hamstring still tightens up. Like standing at the kitchen sink bending forward just a bit (even though I'm leaning against the cabinet), causes a reaction after a few minutes. Doing just minor core strength exercises causes irritation where the internal scars must be on the right side. I'm always trying positions and movements that will accomplish the same, but anything for abs I feel after on my right side. I haven't had any bad events since like I wrote about 2 years ago with the twisting, but I'm more careful after recovering from that, and it took awhile. By spring 2020, I was moving better and doing more post-op as much as I am now. Fortunately, I can tolerate some pain, but wish I didn't have to. I can go a lot farther and complete more tasks if I alternate doing what I can sitting down vs. what definitely requires standing. I try to avoid bending over to pick anything up, like it's just way better to sit on a bucket and pick up a full bucket as I'm standing, which is what I learned to do for years before the surgery. Still no firm answers for my chronic fatigue after 3 GPs and 3 specialists (RA, sleep, migraines) running every kind of test, so I'm leaning toward it being all "in my head" -- literally being because of chronic sinus drainage that I discovered recently can relate to chronic fatigue, so I have an ENT appointment soon. If I could deal with the chronic fatigue I would probably be pushing my back a lot more.