Severe spinal stenosis: Would you do surgery?

I am in your shoes! Do you know the position you're in when putting clothes in a top-load washing machine? Or standing at the sink washing dishes? I cannot stand like that at all, I have to lean forward on my forearms. If I don't, I have to sit on a stool, and am then also on my forearms. I too had a right hip replacement 2 years ago and it's well, but put an additional "quirk" in my stance. To look at me you would thing I'm about to fall on my face. I have found that it does get me to the front of waiting lines tho! Have had many injections, none worked. As far as standing straight, I don't know of any device that will do that. I'm afraid they'll tell you to strengthen muscles in PT.

Hello @lotsofpain . I see you are looking to learn from other members with spinal stenosis if there are options for you to consider to help support a more upright posture.

You will notice that I moved your post to an existing discussion on Severe Spinal Stenosis so you can more easily connect with other members with experience like @lifetimepain @collierga @jenniferhunter and @lilypaws .

Here is a resources that may be helpful as well.

- When to Consider a Back Brace:
https://www.spine-health.com/treatment/alternative-care/when-consider-back-brace
One thing to note is that it is recommended to consult with your doctor before using a brace. Have you had that conversation yet?

Lumbar stenosis can make it difficult to walk and often feels better when you lean forward and relieve the pressure on your lower vertebrae.. This describes me to a T, I am severely bent forward . I had an injection which if anything mad things worse.I need something that will physically pull me upright like a belt or brace in the hope ir will force my muscles to learn to support a more upright posture. ANY IDEAS Complicated by the fact that I am waiting for a 2nd hip replacement as my hip has no movement my other hip was replaced 16 months ago

As well as my hip problems which will mean a replacement of my hip on the left side I had my right side replaced a year ago my consultant says some of my problems are to do do with spinal stenosis which causes pain tingling and forces me to bend forward has anyone else experienced this and what if anything can be done about it

@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

@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.

Your talent is amazing and equally amazing is the depth of the research you did and giving back - wow. Thank you for sharing!