Severe spinal stenosis: Would you do surgery?

Posted by collierga @collierga, Jan 15, 2020

Hi there
I am new to this group. I am a 64 yr old female, in basically good health. Hip replacement 10/2018 with no complications.. Currently have no pain only bilateral finger numbness with minor lower left arm numbness. For the most part does not interfere with my daily living activities
Diagnosed with severe cervical stenosis via MRI in 8/2019,C-3-4 shows severe disc degeneration, moderate to severe bilateral formalin narrowing due to uncinate spurs/C4-5 same as 3-4 but with broad based disc bulge/5-7 C7-T-1 Degenerative anterolisthesisBroad based disc/osteophytic ridge causing severe central canal narrowing. i have gone to 2 different Neuro surgeons they both say complete opposite treatment plans. One says observe see him if symptoms get worse. The other doctor wants to do 2 surgeries, first through the front, #2 through the back to stabilize. I am leaning towards no surgery but am looking for someone to tell me they had this surgery and are happy t hey had it done. So far when i talk to people with back/neck issues they say they would never again go through surgery.
Thank you all in advance for you opinions..

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westcom | @westcom | Jul 31, 2022

In reply to @jp78 "Hi, Thanks for the reply and information. I am so sick of a back ache everyday..." + (show)

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.

jp78 | @jp78 | Jul 31, 2022

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

ralphysmom | @ralphysmom | Aug 2, 2022

In reply to @jenniferhunter "@collierga You can call your health insurance and ask for their list of highly rated spine..." + (show)

@jenniferhunter

@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.

Jump to this post

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.

Jennifer, Volunteer Mentor | @jenniferhunter | Aug 4, 2022

In reply to @ralphysmom "Hi Jennifer, may I ask what Mayo Clinic location you have been to? I have DDD,..." + (show)

@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.

collierga | @collierga | Sep 16, 2022

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

Jennifer, Volunteer Mentor | @jenniferhunter | Sep 16, 2022

In reply to @collierga "I have had a acute onset of foot, leg and arm numbness in last 72 hrs..." + (show)

@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

Amanda Roe | @amandajro | Sep 17, 2022

In reply to @collierga "I have had a acute onset of foot, leg and arm numbness in last 72 hrs..." + (show)

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?

pablo81 | @pablo81 | Nov 23, 2022

In reply to @jenniferhunter "@collierga Trust your gut. I got a lot of pressure and a scare from a local..." + (show)

@jenniferhunter

@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.

Jump to this post

Jennifer. What is closest Mayo to Connecticut?

Jennifer, Volunteer Mentor | @jenniferhunter | Nov 23, 2022

In reply to @pablo81 "Jennifer. What is closest Mayo to Connecticut?" + (show)

@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.

virtuous69 | @virtuous69 | Nov 25, 2022

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.

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