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What are people's experiences with spinal fusion surgery?

Spine Health | Last Active: Jun 30 3:25pm | Replies (222)

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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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Replies to "Has anybody gotten different recommendations from spine surgeons? What did you do? How did it work..."

@harvey2007 you will notice that I have moved your post into an existing discussion on spinal fusion to allow you to better connect with members who are already sharing on this topic.

Members like @heatherm @jenniferhunter @ga29 @ken82 and @jenatsky have all recently been discussing this topic and may have experiences they can share with you.

How many spine surgeons have you seen and what have been the varying recommendations, for some additional background?

@harvey2007 Oh my gosh did I get different responses from spine surgeons and 5 of them were wrong! One told me the spinal cord doesn't feel pain and I had pain all over my body. He just blew it off. I was in his office with all of my neck and back muscles with spasms that pulled my vertebrae out of alignment and he didn't even catch that because he never put his hands on me. I had to sit bolt upright or I had a lot of pain. That was fixed by my physical therapist, but I had spent 2 weeks in that condition which happened because I fell asleep sitting up and stressed my neck that had a spine injury. I got the MRI he ordered and never went back. I just found another surgeon.

Of course all of them could see the same thing I did on the MRI that my spinal cord was compressed. What they misunderstood was how that physical spinal cord compression from bone spurs was causing pain all over my body. I found medical literature with similar cases and I had to keep looking until I found a surgeon that understood "funicular pain" which was written up just a few years ago as a rare presentation of symptoms for spinal cord compression for which there is no test to confirm. The only test is that if the symptoms disappear after decompression surgery, then funicular pain is confirmed. A hint is also if an epidural spine injection temporarily relieves the all over body pain, it suggests funicular pain. I had that injection and that experience, and still, the surgeon didn't believe me and disregarded the results. He suggested an inflammatory problem like MS and refused surgical help to me stating that it would relieve very few of my symptoms and he didn't want to put me through it. This makes him sound like a compassionate guy, but in reality , he was looking out for his surgical success statistic ratings and he didn't want to risk his reputation with a poor outcome. He didn't understand the problem, so he regarded it as a big risk.

I knew all the surgeon's missed the diagnosis because I had tracked my symptoms on drawings that I dated and I knew the pattern of how pain developed, so I knew that initially, I could turn pain on and off by the position of my head. My very first symptom was if I turned my head, I got a sharp ankle pain, then if I straightened my neck, it went away. This was reproducible, but they didn't listen and the pain was caused by the bone spurs contacting the front of my spinal cord. That is confirmation that a problem with the position of my neck was causing pain with neurological consequences. The position of the spinal cord changes with body movement because it is supposed to float in the spinal fluid. When something tethers the spinal cord in place, it will cause symptoms in whatever is getting compressed, and symptoms in the body part that the nerves supply.

I also have a biology degree and understand medical literature. I watched a lot of online presentations by spine surgeons at conferences which I found because one of the former surgeons was a presenter, so I watched anything that was relevant and learned from surgeons discussing their cases. Then when I consulted with surgeon #6 at Mayo, he listened and gave me the right answers. He understood funicular pain, and he was the reason I found that literature about it in the first place because I found that term in one of his medical papers and looked it up. I had learned enough about spine surgery and research as well as current trends, that I knew I found a good surgeon. He was also at the top of his class in his education and had received awards and academic scholarships. Everything was positive and he loved his job. Burnout for surgeons is very real. It is a high stress job with serous consequences for mistakes, and a surgeon under excessive stress could be more likely to make a mistake. I found a surgeon who loved the challenge of the job because it was difficult, and who had a personal sense of satisfaction for improving the lives of his patients. Knowledge is everything and getting multiple opinions is very important when a significant life altering choice needs to be made. Surgeons are human, and mistakes can be made so easily. It is up to the patient to advocate for themselves or seek that help from someone else if things don't add up or the patient doesn't understand the choice they are making and possible consequences. Ask a lot of questions. A good surgeon is willing to answer them and explain what they see on imaging.

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!