Severe spinal stenosis: Would you do surgery?

Hi, At this point in my severe spinal stenosis treatment at a pain clinic, I am so disappointed that nothing has helped. I had 2 ablations less than 2 years ago, then doctor convinced me to have stem cell injection. Although he said 60% of patients get good relief, I got nothing except a lot of money out of pocket (high deductible on supplement insurance). Now they want me to consider spinal fusion. If I even thought about this, I would go to the orthopedic clinic that has done multiple joint replacements- both hips (one twice),both knees, one shoulder and foot reconstruction. I'm not whining, just grateful that I can still walk with a cane. I am 82 and trying to avoid a wheelchair, like my mother. The spinal fusion is a big deal for me. Has anyone had this surgery at my age group? Any information will be helpful. Thanks.

@bidcd I was in a position of going from surgeon to surgeon and none would help me because they misunderstood my condition and were afraid of an inflammatory problem like MS. That went on for 2 years before I found a good surgeon at Mayo who helped me. It is worth getting multiple opinions and you may want to research surgeons you would want to consult and read their publications and look a their training, etc. It also helps to work with a physical therapist. My PT bought me some time and helped with the pain by doing electrical stimulation along the nerve roots in my cervical spine. I got some relief for about a week. I know it's difficult, and you need to have a plan for when something doesn't work out on who you will consult next. There is always a wait for the good ones. Ask to be put on a cancellation list wherever you are asking to b seen.

Is your primary care offering pain medication to help?

Primary care physician is clueless Take Tylenol that's it
Difficult to find that information on a surgeon I have had to rely on word of mouth That's what brought me to Mayo I do have backup plan but things change I wish they just had an area where you could get a 2nd opinion quickly by looking at the images and asking a few questions online
When I see a doctor it's usually 15 minutes and done but hours of traveling, scheduling, etc

"I was in a position of going from surgeon to surgeon and none would help me because they misunderstood my condition and were afraid of an inflammatory problem like MS."
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What was the inflammatory problem if it wasn't MS?

I'm not in a rush to have a lumbar fusion done. The surgeons I have seen aren't in a rush to do surgery because of the medications I take to control my inflammatory conditions. They were concerned about infections, delayed healing and osteoporosis from long term prednisone use.

I'm off Prednisone now and on a biologic. Now a surgeon is ready to do the fusion when I'm ready. My inflammatory pain is well controlled but I would have to pause the biologic I take to control inflammation. I might be ready to do surgery but first I need to overcome my fear that the inflammation will resume on top of surgical pain.

At one time, I was told to never have surgery again. Being advised to never have surgery was because of heterotopic ossification (HO) after knee replacements. My understanding of heterotopic ossification is that it is abnormal healing because of excessive and dysregulated inflammation. What of the chances of developing heterotopic ossification after a lumbar fusion?

@dadcue That's a good question Mike. I didn't have an inflammatory problem and that was just a guess by the surgeon without any diagnostic procedures to come to that conclusion. I had an epidural injection that took away all of the pain that I had. My pain was everywhere, in my trunk, arms and legs and feet and arms. The surgeon expected that I would only have arm pain and scapular pain because of the bad disc at C5/C6. He was not considering that some compression of the spinal cord was affecting nerves that were going lots of places, and that changed with my body position. He suggested a spinal tap to check for MS which was kind of radical. There was no indication of MS lesions in any of my MRIs that showed spinal cord and brain stem. He ignored the results of the spinal injection because he couldn't explain why it resolved all pain temporarily. It may have been meant to weed me out of his consideration.

After the spinal injection, I charted my pain as it returned on body diagrams and it showed up in every dermatome. Dermatomes are a map on the surface of the body that correlate with each spinal nerve and where it goes. He refused surgery because he didn't know if it would make me worse and he said it would resolve very little of the problem. What he missed is a condition called "funicular pain" that is caused by spinal cord compression. It wasn't as well known then, and even now, surgeons miss this. Because the spinal cord floats in spinal fluid and is supposed to move, it changes position and changes where compression might happen hitting different nerve cells in that big bundle. My surgery resolved all that pain by decompressing the spinal cord.

Surgery does cause inflammation in healing, and I don't know what your answer is. I did find some information from Mayo about this. You may want to contact the author listed at Mayo and see if you could consult about this, or have your surgeon consult on your behalf.
https://www.mayoclinic.org/medical-professionals/endocrinology/news/diagnostic-approach-to-disorders-of-extraskeletal-bone-formation/mac-20429760
Here is the author's bio.
https://www.mayo.edu/research/faculty/pignolo-robert-j-m-d-ph-d/bio-20246127

I had surgery for my Severe Spinal stenosis. In the healing stages as described would take some time due to the nerves having been pinched / crushed for a long period of time. Yet it was my final solution. Being made aware that if I had any serious trauma to happen to my back, such as being rear-ended or fall on my back, that the potential for paralysis does exist. Did not want to take that chance. However, everyone is different. It depends also on the surgery options presented to you.

"... the potential for paralysis does exist."
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That is the part I struggle with the most. The first surgeon that was reluctant to do a multi level fusion said "pain should be the deciding factor" but first I needed to be off prednisone.

After a biologic was started, surgery was revisited after I got off Prednisone. I needed to be able to pause the biologic for a couple of months. That wasn't going to happen very easily and I didn't want surgery anyhow.

Then an orthopedic surgeon who was investigating why my knee replacements hurt said not to ever have any surgery again because of heterotopic ossification. I thought that was the final word and I was good with that.

Then the supply of my biologic was interrupted during Covid. I was off the biologic for several months. I developed some incontinence but mostly numbness from the waist down. The neurosurgeon that looked at my MRI said a synovial cyst had formed along with all the other problems. My symptoms were causing a concern for cauda equina syndrome. I reluctantly agreed to surgery but not as soon as the surgeon wanted. A date for surgery was "penciled in." I insisted that I wasn't having that much pain when the surgeon said, "It wasn't about the pain anymore." She sounded frustrated with me because I wanted to wait a year before doing the surgery.

In the interim between the above encounter and the penciled in surgery date, the supply of my biologic improved so it was restarted. Prior to my pre-op visit, the surgeon wanted another MRI. The surgeon reviewed my MRI results and said the synovial cyst was gone so there was more room for my spinal cord. We discussed the pros and cons to a "single level" vs. "multi level" fusion but in the end we mutually agreed to erase my surgery date.

No follow-up visit was scheduled but the surgeon gave me her card. She seemed very cordial and said for me to call her when I was ready. That happened more than 2 years ago. Nothing seems any worse but the whole thing is hanging over me. Maybe I should get it over with.

@jenniferhunter
Hi Jennifer
Thanks for sharing your story and expertise. I think you took a great approach by looking into surgeons. I have AKU. It is a rare genetic disease that causes early spinal degeneration in the thoracic and lumbar areas and in major joints. I have had both shoulders both hips, and both knees replaced. I have had five back surgeries with the last being a correction of scoliosis with fusion from T 11 to S1. I also have a spinal stimulator implanted in my lower thoracic spine, which has not helped me. I have stenosis at T 10 and 11, which causes severe pain the longer I am standing I cannot walk very far without my spine hurting me or sitting on my feet for very long without much pain. I do press on because I like To do things and accomplish things. I am on a combination of tramadol and hydrocodone, which give me some relief I would love to know if someone could do surgery for this spinal stenosis, which is causing my pain. WhichMayo Clinic did you go to? I am interested in getting some expert opinions on my situation. I know that thoracic spine surgery is unusual and can have complications. I have been dealing with this spine pain for so long and am willing to do another surgery if it could relieve my pain. I just want to make sure that I am with a surgeon who takes his time and it’s done this type of surgery many times it sounds like Mayo Clinic would be a good place to start. I would appreciate your opinion of this.
Thanks,
Dawn Horne

I meant standing on my feet for a long time not sitting on my feet. 🤪

@dawnhorne Thanks for your question. While I do not know if a surgeon can promise to reduce pain, usually they operate to preserve or improve function. A lot of surgeons do not operate on thoracic levels because of the ribs and lungs, but a deformity surgeon likely does operate there, for example in cases like scoliosis that can affect the lungs because of deformity. I can tell you that my neurosurgeon, Jeremy Fogelson, at Rochester, MN is highly regarded at Mayo and takes many deformity cases. After my surgery with him for a cervical fusion, I sent a letter to the CEO at that time praising my experience there and I received a personal letter back from the CEO stating as much. Dr. Fogelson is a mentor and teacher in the neurosurgery program and if you look at his background, he has excelled at everything he does. I would recommend him highly.

Here is his profile. https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624

You may inquire about a consultation from this link. https://mayocl.in/1mtmR63
This page has billing and insurance information. https://www.mayoclinic.org/billing-insurance

It takes a while to get an appointment. You can request that Dr. Fogelson reviews your records and application. My surgery was for cervical stenosis inside the spinal canal. I had a fusion at C5/C6 with a donor bone disc spacer and done without hardware. That was possible because it was a single level, although bigger surgeries often require instrumentation. I think he would be an excellent surgeon for a consultation, and he is kind and compassionate. My surgery was about 2 hours and was done with neuromonitoring. If he is scheduled for a bigger back surgery, I was told he does one or 2 surgeries in a day, and if it is complex, there may be another surgeon assisting. He would have to answer that, but I do believe he takes his time. I do hope you can find an answer that brings you some relief and better ability to walk. If you decide to request an appointment at Mayo, please stay in touch,

Jennifer