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collierga (@collierga)

Severe spinal stenosis: Would you do surgery?

Spine Health | Last Active: Sep 2 12:21am | Replies (88)

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@collierga I understand your concerns. You will get different opinions from different surgeons, but understand that there is a difference in the level of expertise in neurosurgery for the spine. To get great results, you need to seek care with the very best. It may be hard to figure that out as a patient, and I did my homework in choosing doctors by reading their research papers and learning about their area of interest, as well as any honors they have received from within their chosen field, and not from patient reviews. I am a Mayo cervical spine surgery patient and had great success with my surgery 3 years ago. I was loosing the ability to control my arms because of spinal cord compression, and none of the local surgeons recognized why I was getting pain all over my body. They assumed it should just be arm pain based on my imaging. I found medical literature with a case similar to mine because I looked up a term in a paper of Mayo neurosurgeon, Jeremy Fogelson, and I found what the other surgeons missed. None of them would offer to help, so I came to Mayo and it was the best decision I made. I wish I had come there first. If you can't come to Mayo, look at major interdisciplinary teaching hospitals with medical schools for better surgeons. I saw 5 surgeons over 2 years and just got worse and none would help. Having surgery at Mayo gave me my life back and the ability to use my arms, so the first thing I did when I was able was to paint a portrait of my surgeon. Dr. Fogelson is a spine deformity expert who teaches at Mayo and does both fusion and artificial disc replacements and is very kind and compassionate. I wish I had come to Mayo first, and if I were to have further spine issues, it is the only place I will go. The care was expert and compassionate and efficient. I didn't waste time waiting for tests and consults that drag out for months because Mayo does that efficiently and my testing was complete in 3 days and I had an offer for surgery. I watched a lot of online surgeon presentations and learned enough because I saw so many surgeons that I knew I was getting the right answers at Mayo.

In addition to severe central canal narrowing of the spinal cord, you also have severe foraminal stenosis or compression of the nerve roots. All of this can cause permanent nerve damage, and compression of the spinal cord can cause paralysis and other body issues including incontinence which also can become permanent. A common problem is gait abnormalities with walking. Collapsing discs can also cause the spine to start to fuse itself because the bone remodels from the uneven pressure on the endplates of the vertebrae. It may fuse in a poor alignment and would complicate a surgical repair or possibly make it un-operable. I can't answer that, only a surgeon can. Choosing a surgeon is a very important decision, and you want one who only does spine surgeries and who has a lot of experience. The facility is important too, and I didn't want to be in a for profit doctor owned surgical facility in case something went wrong. I wanted to have hospital surgery where they take time with the cases. I asked and was told that Dr. Fogelson would do 2 smaller surgeries (like mine one level C5/C6 in a surgery in an hour and a half) or one major surgery per day and that was done with neuromonitoring just to check for safety. In comparison, one of the other spine surgeons who saw me did a half hour surgery and did many patients in a day. I didn't want to be rushed through it or have the doctor thinking about time and the next patient when he was working on me.

I had a great recovery and have no pain. I lost some muscle in my arms and shoulders because of spinal cord compression, but that is coming back. It takes a long time, but having surgery at Mayo changed my life. I read a and learned a lot and knew I was choosing a great surgeon. I highly recommend him if you can come to Mayo. Here is my story. Let me know if I can answer any more questions. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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Replies to "@collierga I understand your concerns. You will get different opinions from different surgeons, but understand that..."

Thank you for your response/opinion
You gave me a couple things I have not thought of as I make my decision. The hard part is I have no pain nor loss of any function.
Everyone just tells me don't fall. When I read the complications of surgery it scares me. I am very familiar with Mayo Clinic as have had my daughter there, unfortunately my insurance won't cover going to Mayo Clinic.
Thanks again

I had neck surgery for cervical stenosis. At the time they told me it was so bad that is I fell I could be paralyzed. So they rushed me into surgery. I have had nothing but pain ever since. I wish I had looked into other options 1st. Then almost 2 yrs ago I had a lumbar burst fracture of my L4 they wanted to rush me into surgery right away. I said no I want to treat it with p t first. Wish I could have gotten into mayo for another opion. But even though I have a mayo number they would not see me.

Hi Jennifer, I read your story on the link provided. Girl, you are a fantastic artist!!!! I'm so glad you are fixed and can paint again!!! I'm so happy for you that you found the right surgeon and that the outcome from the surgeries has given you your quality of life back. Yay! @collierga, so many of us here have spinal stenosis somewhere and other pathologies in our spines. I have every symptom of equina cauda syndrome: https://duckduckgo.com/?q=equina+cauda+syndrome&ia=web so my neurologist sent me for an MRI which showed "severe canal stenosis" on my lumbar region. I've already had three back surgeries, the last being a fusion of L4/L5. Now my L3 is causing anterior thigh pain/throb/weakness. I've already lost some bladder and bowel function and legs are the last to go in these types of situations. I'm very concerned. We saw two neurosurgeons who both said they could remove some ligaments, etc. to free up some space. Currently, they can still see some fluid around my spinal nerves so I'm not an emergent situation. However, I had had extensive testing, urodynamics and anal/rectal manometry which I failed both. So I do have a nerve disconnect. The neurosurgeons keep telling me that I am very high risk. I have quite a few diseases and am on two immunosuppressant medications. I used to be on three until the 20+ years of Plaquenil caused some tissue death in my retina. My fear is losing my ability to walk. I do not want surgery now, b/c my husband couldn't be there w/ me. I am being followed every 3 months by my spine doctor and neurologist. An appointment with each, every 3 months. We'll see. I will keep you both in my heart, mind and prayers. Warmest wishes, Sunnyflower

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