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? ,

@ga29

No, nothing so far. I eat and drink loads of calcium, hasn’t helped. My calcium levels are high I think, bloodwork shows it at almost 10? My PCP never mentions it, tells me to take Vitamin D3, and calcium tablets. I take meds for hypothyroidism, Synthroid and another that’s like a booster. My stomach hurts when taking most supplements, so I’m not real good about taking. I read your story on here re: your fear of surgery, amazing! I’m glad you were helped! I’m seeing my primary doctor in a few weeks, first time since my surgery. I will bring up my bones issue!

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@gabylex Those are the same blood calcium numbers my mom had of 10 and 11 and she had a bad parathyroid gland causing this and removing calcium from her bones. Here are some links about parathyroid issues. You need to see an endocrine specialist to diagnose this. If this is affecting you, dietary calcium does not help bone density. My mom had to stop eating anything with calcium in it because high blood calcium can cause other problems.
https://www.parathyroid.com/diagnosis.htm
By clicking the links, they even had an app developed by doctors for diagnosing parathyroid disease. http://calciumpro.com/

There is also a rare condition that causes high blood calcium, but it isn't caused by the parathyroid gland called FHH – Familial Hypocalciuric Hypercalcemia.
https://www.parathyroid.com/FHH.htm
This link has fact sheets and a webinar on Hyoparathyroidism
https://www.osteoporosis.foundation/educational-hub/topic/osteoporosis-and-associated-disorders
https://jmg.bmj.com/content/41/3/155.full

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I want to share my experience now that I'm on the other side of spinal fusion surgery. I have read about other people's problems following the surgery, and I greatly feel for them. I'm learning it's not always an easy street once surgery is completed, particularly during later years as people age.
Right now, I feel positive and hopeful about the outcome of my surgery, that involved L3,4,5, and S1. At five weeks later I am regaining my strength and mobility while just starting to reduce my medications. I sleep through a good part of the night, though for the first few weeks, spent a good part of the night in a recliner. I can now walk half an hour with the aid of my hiking sticks with no pain or major fatigue. Previously, I couldn't walk three minutes to the mailbox without deep fatigue and plenty of pain. I now look forward to hiking to the library and grocery store in my new neighborhood. I am starting to dream about the travel possibilities for my husband and I ( once we get past this horrible pandemic). I can enjoy my brand new grandson and being a grandmother, as I have dreamed about for so long!
I feel that the surgery will certainly have been worth it all, even if this just gives me ten, (maybe 20) good years where we can enjoy good health.
I am so grateful- I feel I have regained so many years!

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@heatherm

I want to share my experience now that I'm on the other side of spinal fusion surgery. I have read about other people's problems following the surgery, and I greatly feel for them. I'm learning it's not always an easy street once surgery is completed, particularly during later years as people age.
Right now, I feel positive and hopeful about the outcome of my surgery, that involved L3,4,5, and S1. At five weeks later I am regaining my strength and mobility while just starting to reduce my medications. I sleep through a good part of the night, though for the first few weeks, spent a good part of the night in a recliner. I can now walk half an hour with the aid of my hiking sticks with no pain or major fatigue. Previously, I couldn't walk three minutes to the mailbox without deep fatigue and plenty of pain. I now look forward to hiking to the library and grocery store in my new neighborhood. I am starting to dream about the travel possibilities for my husband and I ( once we get past this horrible pandemic). I can enjoy my brand new grandson and being a grandmother, as I have dreamed about for so long!
I feel that the surgery will certainly have been worth it all, even if this just gives me ten, (maybe 20) good years where we can enjoy good health.
I am so grateful- I feel I have regained so many years!

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Good evening @heatherm, Thank you so much for sharing your experience. I noted that your outlook is consistently positive. Congratulation on keeping your promises to yourself that you will let yourself dream of travel and other activities.

We are going to see our grandchildren next month. I am very excited. We get to be there for Amelia's 2nd birthday. And I will be grateful for my shoulder surgery so I can play on the floor with her. And I will have gratitude for my knee that doesn't cry all the time because of my TKR. Just like you, I have had a laminectomy with fusion and my neck has welcomed some titanium blocks to fuse the vertebrae and keep me upright.

You have overcome some real challenges and that s impressive…… and I want you to enjoy all the time you have regained.
May you have contentment and ease.
Chris

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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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@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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@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?

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Was anyone on this discussion told by some surgeons they needed spinal fusion but other surgeons said they just needed discectomy? How did you decide? Were you happy with your decision?

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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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@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.

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I had my fusion L4-S1 (with L5 was not secured with screws) in 1992 with plates and screws. Since the. They’ve learned this type of hardware is not the correct material. Now that I’m so many years postop with spinal OA and associated pain and neuropathy that any attempt at removing old and implanting new at 69 yo would cause me additional acute pain that I don’t need in addition to my chronic pain. If I was younger and had to make the same decision now that I had to then, I’d still go ahead and have the surgery as the constant acute pain was too unbearable. My best advice is don’t stop moving and exercising, pain or no pain don’t stop. Good luck

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@jenniferhunter

@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.

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Wow you have done a lot of research and good on you xx I have been struggling for years now with all over pain chronic fatigue, heavy legs and have seen numerous doctors some have said oh it’s your weight loose that and it will be all okay they didn’t listen to me at all very frustrating x I finally had a CT , MRI scan on my cervical area diagnosed with severe cord compression at 3 levels C 4 to C7 so I see one neurosurgeon and said why was I seeing him ? I can’t help you very depressing as my GP and PT were very concerned so when I seen my rheumatologist he was very angers in that doctors response and sent me off to see one of he’s colleges and he has offered me surgery up to me but I don’t fit the category of my arms and hands being effected? But my concern is better to get it now before it gets worse I am 58 atm as the nerves are compressed it’s a matter of time before they have had enough xx any thoughts would be helpful

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@mincer

Wow you have done a lot of research and good on you xx I have been struggling for years now with all over pain chronic fatigue, heavy legs and have seen numerous doctors some have said oh it’s your weight loose that and it will be all okay they didn’t listen to me at all very frustrating x I finally had a CT , MRI scan on my cervical area diagnosed with severe cord compression at 3 levels C 4 to C7 so I see one neurosurgeon and said why was I seeing him ? I can’t help you very depressing as my GP and PT were very concerned so when I seen my rheumatologist he was very angers in that doctors response and sent me off to see one of he’s colleges and he has offered me surgery up to me but I don’t fit the category of my arms and hands being effected? But my concern is better to get it now before it gets worse I am 58 atm as the nerves are compressed it’s a matter of time before they have had enough xx any thoughts would be helpful

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@mincer It sounds like you just hit the wall from the doctors who say that that the pattern caused by cervical spinal cord compression is only that your arms and hands should be affected. I was told that too, but it was wrong. The doctors should know this. If I as a patient can find the medical literature that describes leg pain caused by spinal cord compression in the neck, they should be able to find it too, and good surgeons go to surgical conferences to learn about the latest research and case discussions from the spine societies who host these meetings every year.

If you look at a dermatome map which shows where the spinal nerves go when they reach all the way to the end of the nerves at the skin, this is true. Theses are the nerves that come out between the vertebra and yes, they are very specific to where they go. If the spinal cord is compressed BEFORE it gets to the spinal nerve, it will also cause a problem, but you can't predict specifically where it will be when the whole bundle gets compressed because you don't know which nerve cells in that giant bundle are affected. A lot of stuff gets compressed together.

When I found the medical study that described this, I had just been dismissed and refused surgical help. I had been a patient of other doctors at that medical center for several years, a neurologist and a thoracic surgeon and they would not help me address the issue with the spine surgeon who missed it. No one was willing to point out a mistake to a surgeon who was at the head of his department. That surprised me, but they did tell me to get another opinion. I had to find another doctor at another medical center and that is when I came to Mayo where this issue called "funicular pain" was known.

I had heaviness in my legs too. You might want to find a better surgeon, and start your inquiry with the question about your legs and your cervical stenosis and ask if the doctor thinks this heaviness and weakened walking gait is funicular pain. You will find out if they understand funicular pain, and if not, don't waste your time there. I sent a copy of the medical literature with my inquiry when I contacted Mayo. 5 years ago when this was an issue for me, there was only the study in the first link about funicular pain, and now when I search, I can find a lot more. Spine surgeons should know this if they are keeping up with the knowledge in their field.

This explains dermatome maps and where the nerve pathways go.
https://www.healthline.com/health/dermatome#dermatomes-list
Funicular Pain
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.spine-health.com/conditions/neck-pain/types-neck-pain
https://neupsykey.com/neurologic-evaluation-of-the-cervical-spine/
https://bmcmusculoskeletdisord.biomedcentral.com/articles/10.1186/s12891-020-03299-x

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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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