What are people's experiences with spinal fusion surgery?

Posted by heatherm @heatherm, Oct 27, 2020

After trying pretty much everything, with little pain relief, my surgeon has put me on his priorty elective list for fusion of my L3/4/5, and maybe S1. I've heard both positive and negative experiences with this surgery. What are people's experiences, with this? ,

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The key here, I believe, is is finding the "right" spine surgeon. I have hade an unpleasant experience with a piece of a vertebrae being fused to my spinal cord, the Doral cover was ripped and a micro surgeon had to be called in to repair the tear. A fusion has been suggested for the L4-5 (with a rod & screw due to a severe compression. My pain is more specific, radiating from the area south of my right hip downward; severe in the am and at night when trying to sleep. My surgeon has been quite informative explaining the implications of the X-rays and MRIs. It becomes a risk benefit analysis (my added risk is having osteopenia.)
I think you need to find a surgeon both competent and empathetic to help you through your situation. Your PCP should be the first stopp, but not the only one. Be your own advocate.
Good luck.

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@wisco50

I just saw this. I tried one or two of those injections and only got a few days of relief. If I had gotten 5 months of great relief, I would have tried delaying surgery in exchange for those. Just my 2 cents.

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An update on me - my back pain is still gone but all of the neuropathy came back (tingling / knee twitching / localized nerve pain etc) the injection did well pretty much 6 months, P/T was great but the knee twitches are now on both sides ... I will probably do one more as I now have hernias to repair so I will need to get that behind me b/f I do anything on the spine. I learned my S1 is congenitally fused which is why I have issues at the L4/L5 level. It is a little comforting to know I did create the condition at least. I will be meeting a neurosurgeon in June to discuss options. I came across an interesting procedure called Coflex. Has anyone had this vs a fusion?

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@harvey2007

Has anybody gotten different recommendations from spine surgeons?
What did you do? How did it work out?
Thanks for your thoughts.

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I went to see quite a few NS before finding one whose expertise convinced me he was the one I would trust with my fusion at L4-5, he is at Mayo Clinic.
The first doctor said I shouldn't read my MRI report, words are meant to scare us. The bone marrow lesion the report mentioned, he said it wasn't worth mentioning, means nothing. That's the area I had removed during my fusion, btw (L-4 facet joints). He thought my pain was age related OA, and maybe my SI joints. He wanted testing done there with Lanocaine injections.
The next surgeon consult said my pain was caused by a tarlov cyst I have on S1-2 area. He suggested a spinal cord stimulator, said surgery could not help me. The next, said it could be many things, thought it was my SI joints mainly, sent orders out for various tests to other doctors for fibroneuralgia, neuropathy testing.
None of these doctors gave me a physical exam, or went over the MRI CD with me, they just looked at the MRI I brought with me and talked; the last one didn't want me to talk or ask questions, only to answer his questions. I had to laugh at his arrogance.
The last surgeon I met was at Mayo.
He ordered many tests that were done that same day; he went over the tests with me, showed me where the worst damage was. He cautioned me, told me there were other areas that might need surgery later, told me this fusion may not work, but it had a 50/50 chance of reducing my pain. I took those odds, because the quality of life I had at that point was so low, I had to try. I'm very glad I did, my pain is much better.
Four months later, I am having trouble in the lower back in the hip area which I think may be my SI joints. I'm hopeful physical therapy can help, I'm going to see them the end of the month.
I wish you luck with your choices, as others say do your research and be your own advocate. Everyone's problem may be different, just make sure you are confident in your surgical team. This site has been very helpful to me these past months, so many people willing to give their advice. I am thankful!

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Having had L4 L5 surgery, and being told that a fusion is now necessary, I believe it is both a quality of life, and risk benefit analysis issue.
Having a PCP you trust will help. At the end of the day, your surgeon is in the best position to help you make your decision. Not likely an easy call. Some of your surgeons are not worth commenting on, but goods one are available.

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@spudmato

Having had L4 L5 surgery, and being told that a fusion is now necessary, I believe it is both a quality of life, and risk benefit analysis issue.
Having a PCP you trust will help. At the end of the day, your surgeon is in the best position to help you make your decision. Not likely an easy call. Some of your surgeons are not worth commenting on, but goods one are available.

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Good evening @spudmato, I don't know if my experience will help you because it was quite a long time ago. When I was much younger, I had spinal surgery from falling down the stone stairs at the movie theater, At the time, I was so uneducated that I blamed my legs for creating their own pain. Of course, it was lumbar vertebrae. At that time after surgery, we stayed in the hospital for 10 days so that we could have lots of PT before going home where there was none.

I felt pretty good and sauntered back out on the golf course. However, the spine began to hurt again. One of my golf partners was an orthopedic surgeon and he found that the surgery had not been done well. In fact, the first surgeon was given his walking papers. And the next thing I knew was that my golf partner wanted to fuse bone from my hip onto my spine. Risk/benefit? Driven by a sense of trust (he didn't cheat at golf even when I was winning), I agreed.

Cutting to the chase, I was home by Christmas and using every club but a driver in a few months. Another friend and Yoga teacher told me that she was going to show me two exercises to do every morning to keep that spine healthy. I still do them today and I have not had any back issues in "are you ready for this?".........45 years.

There is no magic.......we are the ones who are responsible for doing what the surgeon and PT requested. We are the ones who must make sure we are ready for physical activity whether that be months or longer. Until fully recovered, we must look at every golf invitation or tennis match as another risk/benefit decision.

Here is another golden truth......if we learn to sit up very straight when we slide into a chair, that alone will strengthen our supporting muscles.

If you were waiting for the bad news.....yes there is some. The place on my hip where they "borrowed" the bone.........I now get injections to keep it happy.

May you be safe and protected from inner and outer harm.
Chris

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Has anyone heard of or had the Coflex procedure? It looks encouraging for stenosis decompression.

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@jeffkboyce

Has anyone heard of or had the Coflex procedure? It looks encouraging for stenosis decompression.

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@jeffkboyce you will notice that I moved your post back into this discussion you were previously participating in so you can ask members like @artscaping @spudmato @jenniferhunter and @ga29 all who have varying experiences but who may have come across the procedure and can share more with you or you with them.

What about this procedure is most appealing to you and have you spoke to your NS about it?

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@amandajro

@jeffkboyce you will notice that I moved your post back into this discussion you were previously participating in so you can ask members like @artscaping @spudmato @jenniferhunter and @ga29 all who have varying experiences but who may have come across the procedure and can share more with you or you with them.

What about this procedure is most appealing to you and have you spoke to your NS about it?

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Thank you - I have not yet I meet with one in June 14th so I intend on asking. The procedure restores disc height and creates room in the canal and is significantly less invasive with faster recovery than fusion. Additionally since the discs aren’t fused you don’t have the risk of adjacent acceleration of discs above and below the fusion.

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I have pretty severe pain, numbness, loss of muscle and motion in arms and shoulders. Ct scan and MRI shown degenerative discs c3 thru c7 and spondy in c3/c4, stenosis and several other indications. Pain meds just aren't working any more. Tired of being a zombie. A neurologist says he feels its not bad enough to warrant surgery yet. A neurosurgeon and an Ortho surgeon both want to do fusion ACDF no artificial discs. So who do I listen too? At 63 should I wait until the pain is unbearable and maybe get to 70 when the discs are gone to get surgery? My lumbar is a disaster but I feel I need my arms and hands back first. So stay on stronger meds for longer or surgery?

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@cabits

I have pretty severe pain, numbness, loss of muscle and motion in arms and shoulders. Ct scan and MRI shown degenerative discs c3 thru c7 and spondy in c3/c4, stenosis and several other indications. Pain meds just aren't working any more. Tired of being a zombie. A neurologist says he feels its not bad enough to warrant surgery yet. A neurosurgeon and an Ortho surgeon both want to do fusion ACDF no artificial discs. So who do I listen too? At 63 should I wait until the pain is unbearable and maybe get to 70 when the discs are gone to get surgery? My lumbar is a disaster but I feel I need my arms and hands back first. So stay on stronger meds for longer or surgery?

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@cabits Hello. I am a cervical spine surgery patient and I understand your dilemma. In my experience, a neurologist and a spine surgeon will look at imaging differently. They both see the structural issues, but they think about it differently. I had my surgery at Mayo, and the surgeon had me see a neurologist first who said he wasn't sure if it was bad enough for surgery yet, but that the surgeon might have a different opinion. That was true, and the surgeon offered surgery which I gratefully accepted. What you also need to take into consideration is how much nerve or spinal cord damage is happening, and when would that become permanent? That is a hard question to answer, and I was told that myelopathy (spinal cord damage) doesn't always show up on the MRI. When myelopathy does show up as a whitish area inside the spinal cord it is because the axons of the nerve bundles have died off and dissolved in the spinal fluid.

Put these questions to your surgeon of how urgent is your need for intervention and what are the risks of waiting. Surgery will stop it from getting worse, but it doesn't heal permanent damage, and you could end up in pain even though you have had surgery. If you have spinal cord compression as I did, it is better to decompress that before real damage happens. I had my surgery at 59 and had a great recovery and it did relieve my pain because it was caused by spinal cord compression.

It is your choice when to proceed and which surgeon you hire for the job. Get as many opinions as you need to make an educated choice. There are differences in what implants may be used. I chose only a donor bone graft and no hardware for my one level fusion. That was offered by my surgeon because I agreed to stay in a neck brace until fused (3 months) and that was worth it. He probably would not have offered if it was a multilevel fusion. Lumbar surgery is a much more difficult recovery because it is bearing most of your body weight. What also matters a lot in recovery is if you can get onboard and embrace the journey. That will help lower stress and reduce pain and you will heal better. You have to pick a surgeon you believe in and for whom you have total trust. You need to be comfortable with your surgeon and have all your questions answered. I was in pain for 2 years as I went from surgeon to surgeon and could not find one willing to help me until I came to Mayo. That was because the non-Mayo surgeons did not understand how to connect my all over body pain symptoms to the spinal cord compression in my neck. I would have had my surgery a lot sooner if I could have. I did loose muscle mass in my arms and shoulders because of waiting, and I got muscle back after my recovery, but not all of it. I am not quite as strong as I was before, but close. Taking pain meds might mask some of the dangers. I didn't take pain meds before or after my surgery which worked for me, and I also could chart my progress.

It will be a long recovery. I am so glad I had this surgery. You might enjoy my patient story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Would it help you to get a few other surgical opinions?

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