Severe spinal stenosis: Would you do surgery?

Joan: Where do you live? Mayo offers this procedure. Your Pain Specialist should be able to recommend another specialist who does the procedure or Google the procedure and ask the manufacturer for nearest physician. I have a friend who had it with good results for pain management. I was evaluated by a Pain Specialist who does Vertiflex procedures but I did not qualify because of too extensive of lumbar and thoracic stenosis.

Hi, Thanks for the reply, I live in Sioux Falls and have been to mayo for my lung cancer but since its a 3 hour drive for me I decided just to see drs here in sioux falls. I was surprised when they said no one did it here yet so am hoping someone will do it soon. Its nice to hear some have had good results with the surgery. I am 78 and really don't want to go thru a a major surgery and a long recovery. Keep in touch and I'll let you know what I find out about drs here in sioux falls. Thanks, Joan

Hi Jennifer, may I ask what Mayo Clinic location you have been to? I have DDD, spinal stenosis and spondylosis at C 5-6 with horrible burning pain symptoms to several areas of my body. Cant figure out if its worsening of the spine or MS. Autoimmune labs negative, 1-2 mm of demyelination on brain MRI, CSF clean. Opposing neurosurgeon opinions whether should do a fusion. So incredible uncomfortable. You have a lot of knowledge under your belt with regards to your condition. Appreciate you sharing.

@ralphysmom

I was a spine surgery patient at Mayo Rochester with Dr. Jeremy Fogelson for spinal cord compression in my neck. I had spondylosis at C5/C6 like you, and my disc had collapsed by 50% and had 2 mm of retrolistesis or backward slipping of C5 over C6. I had lost the normal lordotic curve in my neck. My symptoms first began when I noticed that if I turned my head, I got a pain that felt like something was biting my ankle, and when I straightened my head, it went away. It was completely reproducible. Within a year, I was having random pains all over my body, and they changed locations when I changed either my neck position or body position such as laying down vs sitting or standing. It took 2 years and seeing 5 surgeons before I came to Mayo, and all of them missed the connection of my all over body pain with my spinal cord compression.

The spinal cord floats in spinal fluid inside the spinal canal, essentially a tube within the spine, and the cord has to move to accommodate different neck and body positions. The movement of the spinal cord within the canal can put it in contact with things that don't belong like bone spurs in my case. Toward the end of those 2 years, I had MRIs that showed my bone spurs had doubled. They were growing around the extruded disc material because of the inflammation caused by the rupture. Slowly this creates a tethered spinal cord and affects everything below that level that is specific to the areas of the cord that are compressed. Right before I had spine surgery at Mayo, if I bent my neck forward, it sent a big electric shock down my entire body. What was happening was I was bending the spinal cord forward across the bone spurs and causing the shock. I also had retention in my bladder that was intermittent. My physical therapist would realign my neck as best she could, and when the muscle spasms moved it out of place again, I had the returning retention in addition to walking with a limp. I couldn't control that because I didn't have the muscular strength to overcome it unless my spine was aligned in a better position

I had what was call "funicular pain" that was caused by spinal cord compression, and that is what was missed by all the surgeons except the surgeon at Mayo who performed the decompression with an ACDF. One of my neurologists said that there can be changes that show up in the brain with MS. One of the surgeons who misunderstood my symptoms was suggesting MS as what they call a differential diagnosis which means it has the same or overlapping symptoms making a correct diagnosis more difficult because it can be easily confused. I had done all the tests he wanted over 5 months time, and then he refused surgery stating he didn't know if it would make me worse because I may have an inflammatory problem like MS. He suggested a spinal tap. Nope, I did not do that, I just found another surgeon at Mayo who took me as a surgical patient.

When I was considering Mayo, I read the literature of surgeons I was considering and I found a paper co authored by Dr. Fogelson that mentioned leg pain from cervical stenosis and the term "funcular pain". When I looked that up, I found medical literature with cases similar to mine, and I knew I had found a surgeon who would understand all this stuff, so I hired him for the job.

Here is the literature about funicular pain which was described as a rare presentation of symptoms at the time which was the turning point for me.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
Have you been diagnosed with MS? On your MRI, can you see any space around the spinal cord at your C5/C6 level? Usually the space is white on the MRI. Spinal cord damage can show up as a mottled whitish area inside the spinal cord. Surgeons should not be waiting for that to to happen before they intervene. That represents nerve axons that have died and dissolved, leaving spinal fluid in their place. Correct interpretation of MR imaging needs to be made by a specialist such as a spine surgeon, neurologist or radiologist and must be diagnosed by a medical doctor trained in that area.

You may want to chart your pain and numbness on a body diagram and date it so you will know how it changes and how fast it progresses over time. I did that, and ironically, it scared a surgeon out of helping me. I still showed that to the surgeon at Mayo, and he did help me and offered surgery at my initial consultation.

I have had a acute onset of foot, leg and arm numbness in last 72 hrs from my cervical stenosis
My son read that Mayo Clinic is doing this surgery with laser.
Could someone tell me name of doctor at Mayo Clinic in Mn who I would see
Thank you

@collierga Hello again. We had discussed your spine symptoms extensively a couple years ago. It sounds like your symptoms have gotten worse and require attention. I don't know if laser surgery is right for you, so please keep an open mind as you consult a specialist. It may take a while to get an appointment at Mayo, and they can advise you on that. There may be a longer wait if you are seeking a specific doctor than if you are willing to allow Mayo Clinic to assign a specialist.

This was our discussion that you created back in 2020 in detail about your spine issues and my experiences with spine surgery at Mayo.

Groups/ Spine Health
- Severe spinal stenosis: Would you do surgery?
https://connect.mayoclinic.org/discussion/severe-spinal-stenosis/
To seek an appointment at any of the Mayo campuses, you may use this link to get started:
http://mayocl.in/1mtmR63

Hello @collierga. I see that @jenniferhunter has replied to your post and shared a link to a discussion on severe spinal stenosis. You will notice that I have since moved your post into that discussion, which you can find here:
– Severe spinal stenosis: Would you do surgery?
https://connect.mayoclinic.org/discussion/severe-spinal-stenosis/
I did this so that you may connect with other members like @ralphysmom @jp78 and @westcom who may be able to join you in sharing their experiences.

Here are a couple of links to information you may find helpful on spinal stenosis care at Mayo Clinic:

- Cervical spinal stenosis - Mayo Clinic: https://medprofvideos.mayoclinic.org/videos/cervical-spinal-stenosis

- Mayo Clinic Q and A: Treating cervical spinal stenosis: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-treating-cervical-spinal-stenosis/

Also, here is a link to doctors in Rochester, MN for you to explore:
https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/doctors-departments/ddc-20352968?locations=Rochester%2c%20MN#e60ad0d0bc354936a881a57de90ea8a3
@jenniferhunter shared this link as well, however, if you are interested in pursuing an appointment request, you may use this link: http://mayocl.in/1mtmR63

What intrigues you about the laser surgery approach?

Jennifer. What is closest Mayo to Connecticut?

@pablo81 It looks like Rochester, MN and Jacksonville, FL are equidistant to Connecticut. If you are flying, it wouldn't matter. If you wanted to stay closer to home, patients talk about good care at Massachusetts General. There is also Cleveland Clinic in Ohio which is similar to Mayo, but not as far.

All my friends say they would never do back surgery again. My primary Dr. Believes there can be good results with neck surgery and only willing to refer to neck surgery that she says patients report good and safe results.
Saw spine surgeon who said my pain and disease on my neck hadn't
Progressd that bad to require neck surgery.