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..

@jenniferhunter

@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

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I had neck surgery for cervical stenosis. At the time they told me it was so bad that is I fell I could be paralyzed. So they rushed me into surgery. I have had nothing but pain ever since. I wish I had looked into other options 1st. Then almost 2 yrs ago I had a lumbar burst fracture of my L4 they wanted to rush me into surgery right away. I said no I want to treat it with p t first. Wish I could have gotten into mayo for another opion. But even though I have a mayo number they would not see me.

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@suerc

I had neck surgery for cervical stenosis. At the time they told me it was so bad that is I fell I could be paralyzed. So they rushed me into surgery. I have had nothing but pain ever since. I wish I had looked into other options 1st. Then almost 2 yrs ago I had a lumbar burst fracture of my L4 they wanted to rush me into surgery right away. I said no I want to treat it with p t first. Wish I could have gotten into mayo for another opion. But even though I have a mayo number they would not see me.

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@suerc That must be frustrating. I don't know what is involved in accepting patients to Mayo. I had been turned down by 5 local surgeons over 2 years time, and that may have helped me get accepted to Mayo. I had learned a lot by seeing the spine surgeons who didn't want me as their patient, and I know that surgeons are not equal. Some are very good; others not. Some are high pressure, and I experienced that too, but I didn't trust that surgeon. My PCP told me to get several opinions before choosing. I researched everything I could find before I was their patient. Have you tried physical therapy? What has helped me a lot before and after spine surgery to have a great recovery is myofascial release. Surgical scar tissue causes restrictions in the fascia, and that can be treated. Here is our discussion. There is a provider search on the MFR website.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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I had cervical spine surgery at the Mayo Clinic 11 months ago and I do not regret it. I had numbness and tingling in my left hand, shoulder pain, and was losing strength in my left hand. Most of my symptoms have resolved. PLEASE NOTE: many orthopedic surgeons operate on the spine not just neurosurgeons. My surgeon was Dr. Ahmad Nassr whose research focuses on the spine. Please do not limit yourself to neurosurgepns only.

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@collierga

I have no pain only numbness in fingers and toes. Walking for the most part is not a problem. I try to exercise 3-4 times a week

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What kind of exercise?

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@suerc

I had neck surgery for cervical stenosis. At the time they told me it was so bad that is I fell I could be paralyzed. So they rushed me into surgery. I have had nothing but pain ever since. I wish I had looked into other options 1st. Then almost 2 yrs ago I had a lumbar burst fracture of my L4 they wanted to rush me into surgery right away. I said no I want to treat it with p t first. Wish I could have gotten into mayo for another opion. But even though I have a mayo number they would not see me.

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So very sorry to hear about your pain. it seems everyone has a different story
Sending prayers for healing and that your pain will subside

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@wilcy

What kind of exercise?

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Alternate between walking, elliptical/weights/core work and swimming once a week

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@baltopat86

I've been dealing with advancing spinal stenosis for 4o+ years now. Considered to be late-final stage, I'm now experiencing difficulty maintaining visual focus. Wondering if this is to be part of the disease process….. I haven't found much literature concerning this particular issue.

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hello Baltopat86, i was looking up spinal stenosis symptoms and all, i am not familiar but i do have lots pain in the back all the way down to legs and feet, finally i got an appointment with a neurologist oct.27 i still have a long wait and i am in pain, i just wish you all the best, take care

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I've been dealing with advancing spinal stenosis for 4o+ years now. Considered to be late-final stage, I'm now experiencing difficulty maintaining visual focus. Wondering if this is to be part of the disease process….. I haven't found much literature concerning this particular issue.

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@baltopat86

I've been dealing with advancing spinal stenosis for 4o+ years now. Considered to be late-final stage, I'm now experiencing difficulty maintaining visual focus. Wondering if this is to be part of the disease process….. I haven't found much literature concerning this particular issue.

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Hi @baltopat86 and @fde11, you notice that I moved your messages to this existing discussion in the Spine Health group https://connect.mayoclinic.org/group/spine-health/

I did this so you can meet other members talking about spinal stenosis like @collierga @jenniferhunter @wilcy @suerc @lilypaws and others. I encourage you to browse the discussion in the Spine Health group. You're not alone.

Baltopat, you ask an interesting question about spinal stenosis and losing the ability to maintain visual focus. Do you find that you also have difficulty with concentration or other cognitive abilities? Are you suspecting this is due to pain?

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@baltopat86

I've been dealing with advancing spinal stenosis for 4o+ years now. Considered to be late-final stage, I'm now experiencing difficulty maintaining visual focus. Wondering if this is to be part of the disease process….. I haven't found much literature concerning this particular issue.

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@baltopat86 I'm sorry you are suffering. I can share what I know from my experiences as a spine surgery patient and my background in biology, and what I have found in medical literature. You may want to consult a physician about your visual problems and perhaps they can be improved if they can figure out the cause.

Your optic nerves are at the base of your brain and they cross underneath there, so they connect into the visual cortex in the brain on the opposite side. Spinal stenosis would not touch that as those are different areas. I am not a doctor, so I can't diagnose things, but we can talk about possible issues. The only thing I can think of regarding vision that may be spine related is if there are circulation issues related to proper alignment of how the skull sits at the top of the spine. Migraines can be caused by physical problems of this misalignment and muscles spasms that add pressure and migraines can have visual disturbances. Spinal misalignment also causes vertigo which I have experienced from my spine issues when my vertebrae were independently twisted or tilted by spasms.

There are lots of other reasons for visual problems and that might be worth asking your doctor about. Vision can be affected by medications, diseases that affect the eye or the circulation to the eye, clouding of the lens with cataracts, or physical issues with the retina or vitamin deficiencies. Diabetes can affect the eye, internal pressure, and even cancers like melanoma. My husband has an issue on his retina where there are some folds and thinning of the retina that affects his vision that is happening right in the sweet spot where the lens focuses on the retina. Vision happens because of rods and cones in the eye that act like the sensors in our digital cameras and convert light into nerve impulses that are sent to the brain for interpretation. I have found some medical literature that the body has some ability to regenerate damaged parts of the retina.

(Spontaneous Regeneration of Human Photoreceptor Outer Segments https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515765/)

Here is a quote and link regarding migraines from MSK Neurology
https://mskneurology.com/treating-migraine-headaches-addressing-atlas-thoracic-outlet/
"There are five main causes of occlusion for the main cerebrovascular in- and outlets, as far as I am concerned:
Occlusion of the vertebral vein and artery due to vertebral “hinging”
Internal jugular vein occlusion due to forward movement (A-O torsion) of C1 transverse process
Vertebral artery occlusion due to rotation of the C1 and/or C2
Vertebral artery occlusion secondary to subclavian artery occlusion, between the anterior scalene and SCM
External jugular vein occlusion due to tightness of the sternocleidomastoid "

"A mimic of migraines: Suboccipital dysfunction
The suboccpitals attach between the skull and down to unto C1 as well as C2, and will help to syncronize the upper cervical with the skull’s movement, and prevent misalignment of the atlas joints due to its pulling angles. In other words, absolutely essential functions. They are also, when significantly weak, a common cause of vertigo as well as migraine-mimicking headaches such as cluster headaches in the eye."

For explanation of the terms –
The vertebral artery sends oxygenated blood to the brain. The vertebral "Hinging" is bad posture of slouching and sticking your neck forward. The C1 is the top vertebrae that supports the skull which has spines that extend sideways, the transverse processes, and the spine that extends backward. These are for muscle attachments to turn the head and neck. The vertebral artery runs right next the the cervical vertebrae, and turning the spine will stretch the artery. Compressing the subclavian artery between the scalene muscle in the neck and the "SCM" (Sterno Clavicular Mastoid) happens with thoracic outlet syndrome (or TOS) which I have. It is overly tight neck and chest muscles that affects circulation and compresses nerves that supply the arm, but also affects circulation to the brain. Some people with TOS can pass out when they turn their head because of occlusion of the blood supply to the brain. The SCM muscle is what turns your head and connects from near the ear to the sternum at the center between the 2 collar bones. The jugular vein drains blood from the brain. Suboccipitals are muscles attached to the scull and extend to the first and second vertebrae.

This quote about thoracic outlet syndrome describes some of the visual disturbances related to circulation. It comes from this article about TOS. https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/ (Syncope is passing out or fainting)

"Subclavian steal symptoms presents secondary to arterial insufficiency, created by a retrograde flow that “steals” blood from the brain circulation, more specifically from the basilar artery via the vertebral artery. Classically it presents with neurological symptoms from the posterior brain and cerebellum [4,6]. Decreased flow over the basilar artery gives rise to symptoms like lightheadedness, ataxia, vertigo, dizziness, confusion, headache, nystagmus, hearing loss, presyncope and syncope, visual disturbances, focal seizures, and in extremely rare cases, death [6–10]. However the vast majority of patients are asymptomatic and rarely require any intervention [3,5,11]. – Alcocer et al., 2013"

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@fde11

hello Baltopat86, i was looking up spinal stenosis symptoms and all, i am not familiar but i do have lots pain in the back all the way down to legs and feet, finally i got an appointment with a neurologist oct.27 i still have a long wait and i am in pain, i just wish you all the best, take care

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Hello fde11 and @baltopat86, I just thought of something. Did you tell your neurologist office to put you on a wait list to get you in sooner should someone cancel and a spot open for you? It doesn't hurt to let them know how severe or intolerable your pain is. I worked in healthcare for 20+ years and know the system and how it works. I just hate that you're in so much pain. I get it! I'm facing my 4th back surgery. First three were outside the spinal canal but this one will be inside to free up more room for the spinal cord and nerves. You know about that. My Neurosurgeon keeps telling me that I'm so high risk which I know I am. I'm going to try to put this off as long as I can but am already losing some function. Next to go is my legs and I'm already having loss there. It's never straight forward, always a now-win and risk in some way/s. That's where prayer comes in for me! I ask the Lord to give me direction and to make it clear b/c I'm pretty dense! LOL! I wish you all the best, I really do. Take care and warmest regards, Sunnyflower

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@sunnyflower

Hello fde11 and @baltopat86, I just thought of something. Did you tell your neurologist office to put you on a wait list to get you in sooner should someone cancel and a spot open for you? It doesn't hurt to let them know how severe or intolerable your pain is. I worked in healthcare for 20+ years and know the system and how it works. I just hate that you're in so much pain. I get it! I'm facing my 4th back surgery. First three were outside the spinal canal but this one will be inside to free up more room for the spinal cord and nerves. You know about that. My Neurosurgeon keeps telling me that I'm so high risk which I know I am. I'm going to try to put this off as long as I can but am already losing some function. Next to go is my legs and I'm already having loss there. It's never straight forward, always a now-win and risk in some way/s. That's where prayer comes in for me! I ask the Lord to give me direction and to make it clear b/c I'm pretty dense! LOL! I wish you all the best, I really do. Take care and warmest regards, Sunnyflower

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@sunnyflower how can you not be scared to death? What happens if you don’t have this surgery?

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