Has anyone suffered from lumbar spinal stenosis? Did you have surgery?

Hi @melinda7 I also have spinal stenosis in about 3 different places. I have not had surgery. Although 2 hip replacements, 1 revision seemed to help my whole spine. And PT. But I do have severe cervical stenosis at C2, C3 and bulging disc. Considering the location surgery is a definite. I could lose ability to walk among other things. There is very little space between the sheath that protects your spinal cord and the spinal cord itself. It’s also being compressed. The first doctor mentioned surgery and said it was pretty bad. He’s my orthopedic that I have been to for my back. So I asked about other options. PT, trigger shots, Duloxitine. It worked for about a year. Now I am at the point it has to be done. Do research on your doctors, don’t be afraid to ask all kinds of questions and what are consequences of surgery or no surgery. I stand on my feet 8 hours a day. I wear Hoka sneakers with good socks. Does nothing for my neck but my back hasn’t had me bent over in pain and hardly walking in a long time. I hope you get the right answers and a great neurosurgeon if you need one. I wouldn’t let a orthopedic do it. Although they do, I’d rather have a neurosurgeon.

I am on two wait lists at Mayo in MN. May not be an opening till December. Very hard to wait that long. Definitely a neurosurgeon. Ortho for any bone but not the spine. Mine started end of May. I think if I just try not to bend it will be beneficial. A neighbor has allowed me to use her T.E.N.S. unit. Helps while on and helps me move in morning. Two electrodes are working. I had an epidural and that was the most painful procedure. NEVER again. It is just a bandaid. I didn't want it but husband said have to try. Shouldn't have listened. I am on Prolia and my injection had to be postponed for a month.
That is the $1,000 question - wait or have the surgery, what kind, etc. November will be 6 months and 90% of herniated disks are suppose to resolve on own. I am seeing a second neurologist in GA where I live. If he also says it is the herniated disk causing the pain I might have it done BUT it is a far lateral one and only 1 - 5% of people have this so maybe only one or two done a year. I think Mayo would be best for this, Dr. Elder or Dr. Byron. Do you or anyone have a preference and why? I want a doctor that will not be out the door before I understand what they said and one that I don't have to pull information from. I want them to be very open with information and answer why.
I hope you get out of your pain soon especially if having to care for others. Standing on feet for 8 hours is rough. Hopefully you take breaks and put yourself first when you need to.

Leslie:
Could you tell me more about laser treatments? Did you get them through a chiropractor or different professional? Did you have a laminectomy on the L3, 4, and 5? I’m waiting for back surgery L4-5 with fusion and laminectomy of L3,2, and T11-12.

@melinda7 I have seen a lot about Dr. Bydon and his research in regenerative medicine for spine injuries. I do like to get a sense of what a doctor is like by watching any videos of them and seeing how they talk about why they chose their profession. Sometimes those are geared for medical professionals and they talk using doctor speak abbreviations, but I have still found those to be helpful. I also read any medical literature they have co authored to see if I am a good fit for their interests. I had spine surgery with Dr. Fogelson in Rochester, and he was kind, explained everything and he put me at ease. I am one of the stories in the Sharing Mayo Clinic blog for my spine surgery.

You can find my story with Dr. Fogelson here:
-Using the Art of Medicine to Overcome Fear of Surgery
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

What I might suggest is that you can search for a doctor's name in the "Sharing Mayo Clinic" webpage and find patient stories for that doctor. This is a bit more personable than reading their medical literature and you will find a lot of older stories that may not be listed with their bios.

- Sharing Mayo Clinic webpage
https://sharing.mayoclinic.org/

When I searched there for Dr. Bydon, it found 9 stories. I found 5 stories mentioning Dr. Elder. I used the search box on the right side of the page in the box that says "About Sharing Mayo Clinic". If you search there, you are searching in the Sharing Mayo Clinic blog.

Here is a Mayo Clinic Radio interview with Dr. Bydon (on video)
- Minimally Invasive Spine Surgery: Mayo Clinic Radio
https://www.youtube.com/watch?v=YckkDoD0ORM

I did choose my surgeon based on my ongoing education with everything I looked at online about medical literature and current trends in spine surgery. Many surgeons had misdiagnosed me, and when I read some medical literature co authored by Dr. Fogelson that mentioned a term, "funicular pain", I looked that up and found medical cases like mine, so I knew I had found a surgeon who would understand, and I was sold. I was correct, and this could only be proven when surgery fixed all the crazy pain that I had. I have a biology background, so I could understand what I was reading, and I was also working with a good physical therapist and learned a lot from her. It took me 2 years to get to Mayo after being turned down by other surgeons elsewhere. Coming to Mayo exceeded all my expectations, and that is why I'm still here offering my experience to other patients. You can also speak with the neurosurgery department and ask which surgeon would be a good match for your condition.

Thank you and I will read the link you sent me. It is getting really hard to wait. I was talking with a lady in neuro and she was the first one who told me appointment and surgery may not be same visit. I got upset with her. I will not go if I am made to make another trip. Cost too much money and time. I have to make an hour round trip to board dogs, flight, packing, etc. I am going to request and if no promise I won’t go. I’m not sure what I will do. I am positive there is a way to make it easier on patients who live far away. They can improve on this for sure.

@melinda7 I know you are frustrated with waiting, and I know that is hard because I had to wait 2 years until I had spine surgery. You are correct; it is expensive, but expense also has to be managed by Mayo Clinic. Everything Mayo does is very complete involving any necessary tests, and a consult with any number of specialists, and first they need to determine if surgery is the right choice for a patient. No doctor can do that without examining a patient first and without relevant imaging, and no hospital can afford to have surgical staff waiting on call just in case surgery is ordered unless it comes through the emergency department. They cannot make a promise that you will have surgery until they have the time and diagnostics to determine this.

The specialists are scheduled either for consult appointment days or surgery days in addition to teaching and research they may also be doing. The operating rooms also have to be reserved and scheduled as well as all supplies needed. Mayo does have a lot of operating rooms, and a lot of surgeons using them. Lots of patients request care at Mayo because it is worth the wait and the cost of travel for the quality of care. It is probably most of Mayo patients who travel to get there because Mayo is located as a small city in a rural community. They do also have to manage emergency patients who are in life and death situations, or who have catastrophic injuries that need to be addressed immediately to mitigate damage and possible disability and paralysis. This is how all major medical centers manage patients, not just Mayo. Mayo does a good job of efficient scheduling even after you get there and are referred to other specialists. Please don't be upset with the people at Mayo who are doing their best to help and being honest with you about scheduling.

I would have waited about 3 months to get into Mayo as I was told when I applied. They do assign priority on basis of medical need. If I had been in a situation where paralysis or loss of bladder/bowel function was imminent, they would have prioritized my case. As it turned out, there was a cancellation after 6 weeks if I could get there in 5 days or continue to wait. I took the appointment, and I traveled to get there. I was told scheduling for surgery would be perhaps 4 to 6 weeks later and I returned home. The nurse does this in groups of patients to be efficient with her time and her schedule of patient care. I was scheduled for surgery 5 weeks later. There was a cancellation, and I could have had surgery 2 weeks after my consults, but I wasn't ready at home with my planning for my recovery, so I waited. It all worked out fine.

It is best to go into surgery calm and prepared, not anxious and rushed. A surgeon is not obligated to perform surgery, and they can decline for any number of reasons including a patient's attitude or lack of cooperation. I cannot speak for Mayo, but I have watched conferences online where non-Mayo surgeons discuss reasons to refuse surgery to patients such as emotional or mental instability because they will never be able to please the patient. They are putting their reputation on the line every time they operate, and no surgeon wants a procedure to fail because of a patient who will not follow their advice. Surgeons have to make sure they are doing the right thing for their patients and they do not want to be pressured. It is a high stress job already, and the best surgeons welcome the challenges of solving difficult problems. Treat them with your utmost respect.

I understand that you may have some challenges, and you'll need to figure out how to manage things on your end. I say this to you as a Mayo patient from my experience, and I was seen by 5 other surgeons who wasted my time and misdiagnosed my case before I came to Mayo. In spite of waiting 2 years and being badly treated by 5 surgeons who didn't get it, I'm still glad it worked out this way, because the Mayo surgeon was the best of all who saw me clinically. Not all surgeons are gifted, and I can tell you that my results from my spine surgery were worth waiting for.

In one of your other posts, I noticed that you live in Georgia. Would it be easier for you to seek care at Mayo Clinic in Jacksonville, Florida?

I read the bio with the doctor. I am amazed he allowed you to sketch him! I am on wait list because they believe from MRI I need surgery. When appointment is made I will request surgery within a week of appointment or after tests are completed. I get seriously motion sick so this is another reason for one trip plus I am going on a private plane which is another expense since I can’t walk through Atlanta airport and driving there is a nightmare.
Thank you and I will let you know what happens.

@melinda7 Thanks! I guess I should tell you that I walked into my first appointment with a painting of mine. I had gotten so used to being turned down, that I thought I needed to convince the surgeon to help me and show him what I needed to be able to do. I was loosing my ability to control my arms which affected my ability to be an artist. I also used my painting as a mental escape during some painful neurological testing. Dr. Fogelson was pretty down to earth and I told him it would help me with my fear as a way that I could be familiar with him because I only draw or paint things I like, so it made sense. It was my mind game for myself and it kept me from focusing on fears of surgery. After I recovered, and I wanted to paint him, I talked to his nurse about it, and she thought he would like it. He was a really good sport about it, and he was very entertaining while I took some reference photos during a followup appointment. I'm honored that he trusted me to do this. I also brought another watercolor portrait I had done to the followup/photo appointment and I told him what I wanted to do and place him in front of the historic Plummer building. He didn't choose a photo from the bunch I sent to him, so it really was a surprise to him when I returned with the finished portrait at my one year post surgical followup. He was pretty excited about it, and I'm sure it was something he'd never received from a patient before. You can see a photo from that appointment on the first page of this discussion:

- Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/

I do hope you can find what you need at Mayo and that you will be able to work out your appointment needs. You might want to contact Mayo's free Concierge service about affordable accommodations if you need to stay a few weeks;

Five Ways to Contact Mayo Concierge Services

Phone: 507-538-8438
Live Chat: https://www.mayoclinic.org/patient-visitor-guide
Email: concierge@mayo.edu
Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
In-person in Rochester MN: Lobby hours are 8:00-5:00 Monday through Friday. Offices are located in the International Center in the Mayo Mathew’s Lobby, Executive Lounge on Mayo 5, Radiation Oncology Lobby – Desk R

You can also contact @lmindela, here on Connect. He works for the Concierge Service in Rochester.

I have spinal stenosis and arthritis along the spine. Recently had ablations on both sides and have had definite relief. No surgery for me!

I have Lumbar Spinal Stenosis and Osteoarthritis. Injections were not effective and surgery was not an option according to my orthopedic doctor. I've been able to vastly improve my condition with Ashtanga Yoga, which includes eight areas of focus consisting of controls for the body and mind. In the course of my practice I've also adopted an Indian Vegetarian diet and prepare all my own meals at home with natural ingredients. As I near my 69th birthday, I'm in better physical and mental shape than I've ever been in my life with the ability to pursue and active lifestyle. All the best in successfully managing your condition.