Severe spinal stenosis: Would you do surgery?

@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/
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624

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

@collierga You can call your health insurance and ask for their list of highly rated spine surgeons. They keep track of statistics of success rates, and will have a list of preferred doctors. Then you can look them up. There is also Becker's Spine Review and US News and World report that has information about surgeons. Becker's has a list of surgeons to know and tells you where they practice and what research they are doing. If you let me know where you are (nearest city), I can see if I can find some for you. Perhaps other patients may have suggestions too. Is there a medical school or university teaching hospital near you? I know surgery is very scary, and complications are also dependent on how healthy you are before surgery. That is also why you need a highly skilled doctor because they have less complications, and you need to do your part to be healthy, and have your vitamin D levels checked and optimized and take vitamins and eat a healthy diet. All of that helps recovery. Also ask yourself and any specialist that sees you, what your future will be like in you do no surgery and how that might change over time as bone spurs keep growing and arthritis gets worse. It can change quickly and you may find yourself in an emergency surgery situation. If you do your homework now and find a surgeon you have confidence in, you will be prepared to make a decision when you are ready. If you have emergency surgery, you likely will not have a choice of surgeons, and it will be who ever is on call from an emergency room. If you want to be able to make that choice yourself, you will need to search for a good one. There are patients with poor outcomes, and there may be reasons for that beyond the surgeon's control, so you can't let that influence your decision. If you educate yourself about the procedures and risks, and about what other procedures could address the same problem, you'll have more information for your decision. This is a big surgery, but it wasn't as bad as I had imagined it would be. I found I could manage without pain medicine at all right after my procedure. I just rested and slept. The meds also nauseated me. The pain that was far worse that this surgery was from an epidural injection in my spine done by a local doctor (not at Mayo) that caused shooting burning electrical nerve pains that kept zapping me for several weeks because the fluid injected had no place to go and it put pressure on already compressed nerves. I understand how daunting this is with this hanging over you, and I had significant fears, but I found my own ways to overcome them with creativity, and this became a big learning experience for me. I have to use my tactics again now because I'm facing some oral surgery that worries me, but I know that I have the capability to work though all the emotions, and the final result will be better. I can help talk you through some of that. I am glad I did this surgery. I was able to make a choice that prevented having a disability in my future. I am grateful I had that choice and could choose to have a better life.

Good Morning and thank you for the interesting advice. I am in the medical field and have never heard of Beckers Spine Review. Plan to do lots of reading today. Have already checked my Vitamin D level and take it daily. My issue with delay in surgery is I am in no pain. i exercise 3-4 days and week, work full time. My tentative plan is following up with both doctors, getting a few pounds off and continues exercise and prayer. If symptoms become worse then will go in for surgery. Will be checking out both doctors on web site you suggested. The one doctor, Dr. Washer, does have a excellent reputation. He had all the answers to questions I had in a binder, re infection stats etc.
but part of me felt like I was being given a sales pitch. Nearest teaching hospitals are about 2 hrs away.
Good luck with your oral surgery and thanks again for all your information you have been very helpful

@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.

@collierga
hello there,
I only wanted to say to be very mindful of any new symptoms you may be experiencing. My best friends uncle had spinal stenosis and he refused to have surgery and today he is a paraplegic. I also have a friend who is unfortunately also schizophrenic and he’s afraid to have surgery and he requires help getting up now and he has a very difficult time walking and uses a wheelchair part of the the. I’ve tried to explain time and time again the inevitable outcome but sadly to no avail. Obviously you’re much more knowledgeable about the subject than I’ll ever hope to be but I wanted to let you know and again I’m sure you’re very knowledgeable about this but, don’t hesitate to go to a medical research Or any medical library for that matter there’s so much more available there. I frequently go there and do various computer searches a about different conditions. i’m usually a frequent visitor there but since I lost my drivers license, not so much anymore.
Anyway I just wanted you to know that I cared and that I was thinking about you and that I will pray for you and that you have the most optimal outcome possible,
Blessings,
Jake

Thanks so much will keep you posted.
I have had a EMG,MRi and x rays

Thanks so much for thoughts and prayers. I will continue to research,am very mindful of worst case scenario of paralysis. For now am putting my faith in the good Lord, exercise and research.

@collierga
Do you know what is causing you Stenosis, bone spur, Arthritis, disk or bone thickening etc or where exactly it's located? I assume it's not by a nerve root opening.
Good luck,
Jake

Just curious, how do you walk 15 minutes with spinal stenosis?