Severe spinal stenosis: Would you do surgery?

@bazzinga1234 I understand your frustration with pain and the reluctance for surgery. Spine surgery does help a a lot of people, and I am one of those. I had significant pain all over my body from cervical spinal stenosis, and decompression surgery took away all of that crazy pain. It took 2 years of going to surgeons with my unusual symptoms before I came to Mayo and got help. I was loosing the ability to control my arms, and being an artist, that was becoming a disability that would affect my ability to paint. Having spine surgery and some rehab gave me back that ability and I will be forever grateful to my surgeon.

Spinal stenosis and neuropathy are often the result of injuries and added wear and tear of aging. Surgery is a choice that hopefully improves quality of life although there are compromises and choices to be made. Not everyone is a surgical candidate and not everyone would choose surgery if it was offered. I do know from my personal experience that fear increases pain a lot and can escalate pain. These are some of the lessons I learned on my journey, and I had to learn to talk myself out of an angry reaction to pain that was beyond my control so I could stay calm in spite of the pain. Mayo does have a program for understanding and lowering the emotional response to pain. It was mentioned to me at the time of my surgical consult. If it is fear holding you back, there are ways to get past fear. I never thought I could do it, but I did.

My choice was either loose my ability to paint and my artistic talent or face my fear and do the surgery. Choosing surgery also meant a commitment to the physical rehab to be active again. Since my spine surgery, I broke my ankle and I still have trouble with it. If I don't walk enough, I get stiffness in my leg and hips, my pelvis can shift out of alignment, and very recently that has caused sciatic pain and tingling in my feet. I have a bulging lumbar disc. Doing the stretching I learned in therapy and strengthening some muscles to help hold my pelvis in a better position helped, and I was able to fix that sciatic pain. I can also tell you that the pain from breaking my ankle and the disability that goes with it was far greater than my experience of spine surgery and for a much longer period of time.

Had you seen this response I wrote to you in another discussion?
https://connect.mayoclinic.org/comment/800658/
There is a lot of medical research going on, and a surgeon at Mayo has even had some success with regenerative medicine for a spinal cord injury patient who can now walk again because of his stem cell research. Research takes time, and repeated methods to try to reproduce results. Breakthroughs come after years of study and time invested in the goal.

Sound similar to my diagnosis of many years ago. I had a top Neurosurgeon and had relief for several years . Now back on same meds as you. Back to the severe Neuropathy. Not sure it will ever go away, whatever the treatments that evolve. That sounds so negative but I think I am mostly angry that the Medical Community, or most of it, have not come up with something better. Janice

@collierga Trust your gut. I got a lot of pressure and a scare from a local surgeon who was telling me I had significant spinal cord compression, and he was the one who owned a private surgical facility with 10 other doctors. I was going to do the surgery with him, but he backed out because I had leg pain and dizziness. He told me to go to a rehab doctor and fix that first, then I could come back to him for surgery. I couldn't fix anything because it was the spinal cord compression that was causing pain all over my body and the muscle spasms were causing the dizziness and no one understood that. I went to a rehab doctors office recommended by the surgeon, but they had mistakenly not actually scheduled my appointment. That is when I sought another opinion and never went back. This doctor sent quality of life surveys to me for 2 years when I had not had any contact with his office and by that time, my spine had already been repaired. No one in his office called to check with me, it was just the marketing communications sniffing for business.

My all over pain symptoms were misunderstood by 5 surgeons. It's called funicular or referred pain, and I found medical literature with cases like mine that said it was a rare presentation of symptoms. None of the 5 would help me, and I came to Mayo. It shouldn't feel like a sales pitch. It should be an honest conversation and you are part of the team that has come together for your benefit. Driving 2 hours to a teaching hospital would definitely be worth it if you find a great surgeon. I drove 5 hours to get to Mayo. I was driving 2 hours to the other surgeons who were not going to help anyway. When interviewing surgeons, ask for their specific success rate for the procedure they recommend and make sure later to look up their licenses and if there has been any actions against them. Also ask about what hardware is used and what complications can happen. Search for studies about the hardware from that manufacturer. I was lucky that I had only one damaged level, and I as able to have a fusion without hardware. I stayed in a neck brace 3 months. I worried about immune reactions, and the possibility of failure. There is a lab in Chicago, Orthopedic Analysis that does immune testing for surgical implants. Of course, you could develop an immune response at a later time. You also should pay attention to muscle loss of volume. If you see that even if you feel no pain, it can signal nerve damage. I don't know if you have had nerve conduction or EMG studies, but my experience was that in the nerves that were malfunctioning and related to my muscle loss, I didn't feel pain in those areas during that test. The other nerves hurt a lot because they were working. You might want to consult a neurologist in case this happens to you. I wanted to mention that because no pain doesn't always mean there is no damage. Find a surgeon you are interested in first because often they refer to specific neurologists they work with. I had to be retested by a neurologist when I came to Mayo and before my consult with the surgeon. If you have any other questions or concerns, please ask. I'm happy to help.

Which Mayo did you go to

Have you considered MILD treatment?