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..

Interested in more discussions like this? Go to the Spine Health group.

I am so sorry you went through all of that but what a beautiful new beginning. I am so happy for you and you clearly are gifted in many ways / thank you for sharing! I have benefited from what you have shared already by way of looking up papers 😀thanks again

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@jenniferhunter

@ Thank you, Jeff. I had 2 years of hoping and searching for a surgeon who would help me locally and those were difficult years. I have a biology degree and previously worked in neurological research, so I knew to look for published literature and understood what I read, and then being an artist and because of biology, I had studied anatomy and understood how the body is put together in 3 dimensions. That gave me a beginning and I also watched all the online neurosurgery conference presentations I could find. It was after looking up a term in a paper co -authored by my Mayo surgeon that I found other literature that described cases like mine, so I knew that this surgeon would understand and believe all the spine symptoms I was describing when I saw him as a patient.

Having spine surgery at Mayo profoundly changed my life. I had a gifted surgeon who did a great job, and I did my homework to work through the emotional part of major surgery and confront and deprogram my fears. It's something I never expected to have the ability to do, but I surprised myself. I worked out a plan of how I would cope and get through it step by step. I learned how to advocate for myself even when I was afraid, and every appointment face to face with a surgeon who dismissed me also taught me how to face them at an appointment. When I came to Mayo I knew enough about spine surgery to know that I had found a great surgeon and there was relief in knowing that I would finally receive the medical help I needed. Being a patient is difficult and can be frustrating, but the patient can have real power in their healing and recovery by embracing the situation, learning everything they can, and making an educated choice not only about a surgical procedure, but also about which surgeon they think is best qualified to handle the case.

I also had a goal and I would not know if I had regained my artistic ability through spine surgery unless I proved it to myself. It's hard to describe how you feel when you can no longer do what you love the most, and trained several years for at art school, because you can't hold your arm up and control its movement. Then when you rediscover this ability and regain the gift that was lost, there are no words to describe that, and the best way I could say it was by expressing it in a watercolor portrait of my surgeon. It was a win-win for both of us and he loves the painting. That is also why I am here helping patients because of what he did for me and because it is a difficult journey. He's a guy who loves his job and I want to give back and express my gratitude any way that I can.

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Jennifer, I try to help patients (online) dealing with debilitating jaw joint issues (TMJ/TMD), because I knew what I went through and how it felt to not be believed about the severity of my situation. So that’s why I try – I literally owe my life to my two wonderful Oral Maxillofacial Surgeons.

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Good morning I have had a MRI done of my neck and it has reported as Central canal narrowing throughout the mid cervical levels, severe at C4/5 and C6/7 with associated cord compression. There is multilevel bilateral neural compression, I was working four days a week ( childcare) but now have gone down two days a week but I am still finding this difficult as when I finish my shift I am stooped over and can hardly walk when I get home I have to lye down and in the middle of the night I get massive cramps in my calf and my left toe curls up with lots of pain and I find that I am dropping things and I have constant pain in my neck and cannot turn my neck side to side without moving my trunk to see what I am looking at and I also have chronic pain in my legs and arms and in my neck it feels like that I am loosing control of it and need something to hold it up so I have been to a neurosurgeon and he said to my that I am okay and don't need surgery which is good but I feel I was being talked down to and now I feel awful with no answers at all I was reading one of the other questions in this group and I do wonder if I don't get a second oppion I will end up in a wheel chair 🙁 can anyone give me any ideas what I can do ? or say to my doctors and also I have a low income and find it difficult to see specialists as they can cost a lot of money.

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@mincer

Good morning I have had a MRI done of my neck and it has reported as Central canal narrowing throughout the mid cervical levels, severe at C4/5 and C6/7 with associated cord compression. There is multilevel bilateral neural compression, I was working four days a week ( childcare) but now have gone down two days a week but I am still finding this difficult as when I finish my shift I am stooped over and can hardly walk when I get home I have to lye down and in the middle of the night I get massive cramps in my calf and my left toe curls up with lots of pain and I find that I am dropping things and I have constant pain in my neck and cannot turn my neck side to side without moving my trunk to see what I am looking at and I also have chronic pain in my legs and arms and in my neck it feels like that I am loosing control of it and need something to hold it up so I have been to a neurosurgeon and he said to my that I am okay and don't need surgery which is good but I feel I was being talked down to and now I feel awful with no answers at all I was reading one of the other questions in this group and I do wonder if I don't get a second oppion I will end up in a wheel chair 🙁 can anyone give me any ideas what I can do ? or say to my doctors and also I have a low income and find it difficult to see specialists as they can cost a lot of money.

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@mincer Welcome to Mayo Clinic Connect, a place to give and get support. Members @collierga @wisco50 @sunnyflower @lotsofpain @lifetimepain @lindaferrara @bustrbrwn22 have discussed this topic in the past and may be able to offer support.

Your situation has multiple layers and it's clearly an extremely difficult situation. To help address the financial concerns, have you considered going to your local county and telling them your medical issues and that you've had to go down in hours. Do you think you would qualify for medical assistance state insurance? I think that may be an option to explore. Your local county human services should be able to help and/or direct you towards appropriate resources.

I think you've already decided that you need a second opinion but there are financial barriers. Did I get that right?

May I ask if you have anyone to help you navigate your local state and county system?

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@erikas

@mincer Welcome to Mayo Clinic Connect, a place to give and get support. Members @collierga @wisco50 @sunnyflower @lotsofpain @lifetimepain @lindaferrara @bustrbrwn22 have discussed this topic in the past and may be able to offer support.

Your situation has multiple layers and it's clearly an extremely difficult situation. To help address the financial concerns, have you considered going to your local county and telling them your medical issues and that you've had to go down in hours. Do you think you would qualify for medical assistance state insurance? I think that may be an option to explore. Your local county human services should be able to help and/or direct you towards appropriate resources.

I think you've already decided that you need a second opinion but there are financial barriers. Did I get that right?

May I ask if you have anyone to help you navigate your local state and county system?

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Yes I would like to get a second medical option but the other question is do u think that my condition deserves some response to a doctor to at least tell me what I can do and can’t do I feel like I am being ignored with my symptoms? Thank you for listening

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@mincer

Good morning I have had a MRI done of my neck and it has reported as Central canal narrowing throughout the mid cervical levels, severe at C4/5 and C6/7 with associated cord compression. There is multilevel bilateral neural compression, I was working four days a week ( childcare) but now have gone down two days a week but I am still finding this difficult as when I finish my shift I am stooped over and can hardly walk when I get home I have to lye down and in the middle of the night I get massive cramps in my calf and my left toe curls up with lots of pain and I find that I am dropping things and I have constant pain in my neck and cannot turn my neck side to side without moving my trunk to see what I am looking at and I also have chronic pain in my legs and arms and in my neck it feels like that I am loosing control of it and need something to hold it up so I have been to a neurosurgeon and he said to my that I am okay and don't need surgery which is good but I feel I was being talked down to and now I feel awful with no answers at all I was reading one of the other questions in this group and I do wonder if I don't get a second oppion I will end up in a wheel chair 🙁 can anyone give me any ideas what I can do ? or say to my doctors and also I have a low income and find it difficult to see specialists as they can cost a lot of money.

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I am so sorry you are going through this. I too have severe cervical stenosis in same location
I would go for a second opinion.
Have you tried any physical therapy?
I did a lot of research when I was diagnosed and exercise to strengthen muscles especially legs was recommended.
Best of luck, will keep you in prayer

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@collierga

I am so sorry you are going through this. I too have severe cervical stenosis in same location
I would go for a second opinion.
Have you tried any physical therapy?
I did a lot of research when I was diagnosed and exercise to strengthen muscles especially legs was recommended.
Best of luck, will keep you in prayer

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Thank you for your kind response, I have tried physiotherapy and dry needling but no response to that I do go swimming as much as I can this helps a little in response to you having the same condition have you had surgery? If so.l has it helped , I feel that know is listening to my pain but it is great to hear from someone who understands thank you very much, take care

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I am a Canadian living in Ontario. I am finding difficulty getting any answers on how best to solve this issue of severe narrowing of neural foramen bilaterally if there is one. I have a definite exercise and yoga routine that helps but neuropathy caused by this is advancing. Neurologist and spine surgeon do not offer up any more detailed information than to deal with it. Is there surgical solution?

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@dunkinmacdougall

I am a Canadian living in Ontario. I am finding difficulty getting any answers on how best to solve this issue of severe narrowing of neural foramen bilaterally if there is one. I have a definite exercise and yoga routine that helps but neuropathy caused by this is advancing. Neurologist and spine surgeon do not offer up any more detailed information than to deal with it. Is there surgical solution?

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Hello @dunkinmacdougall and welcome to Mayo Clinic Connect.

You will notice that I have moved your post the Spine Health Group and into an existing discussion on spinal stenosis so that you may connect with other members who have experience they can lend to you as you explore your options.

I thought of the following two video resources that you may find helpful and wanted to share.

– Spinal stenosis: Mayo Clinic Radio

– Minimally Invasive Spine Surgery — Mayo Clinic

Do these speak to your situation?

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@dunkinmacdougall

I am a Canadian living in Ontario. I am finding difficulty getting any answers on how best to solve this issue of severe narrowing of neural foramen bilaterally if there is one. I have a definite exercise and yoga routine that helps but neuropathy caused by this is advancing. Neurologist and spine surgeon do not offer up any more detailed information than to deal with it. Is there surgical solution?

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@dunkinmacdougall Welcome to Connect. I am a cervical spine surgery patient. I did not have foraminal stenosis, but had central canal stenosis and had surgery at Mayo with great results. Spine surgeons do clean out bone spurs and extruded disc material from the foramen to free the nerve roots. If your surgeon isn't helping you, you'll need another opinion somewhere else. Sometime steroid spine injections can help temporarily by relieving some inflammation. Yes, foraminal stenosis can be treated surgically. Make sure to find a good surgeon.

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@jenniferhunter

@dunkinmacdougall Welcome to Connect. I am a cervical spine surgery patient. I did not have foraminal stenosis, but had central canal stenosis and had surgery at Mayo with great results. Spine surgeons do clean out bone spurs and extruded disc material from the foramen to free the nerve roots. If your surgeon isn't helping you, you'll need another opinion somewhere else. Sometime steroid spine injections can help temporarily by relieving some inflammation. Yes, foraminal stenosis can be treated surgically. Make sure to find a good surgeon.

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I am talking with Mayo now hoping they will take
Me on

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@stantallusa

I am talking with Mayo now hoping they will take
Me on

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@stantallusa Ask Mayo or check the website to see if your insurance is in network. What I did was to ask a specific surgeon to review my records by contacting the neurosurgery department at Rochester. If I can help you with that, please let me know. Here is my patient story and some links about my surgeon who is excellent and is a spine deformity expert. I had been turned down by 5 surgeons outside of Mayo during 2 years time and looked for a surgeon who's interests match my issues. I would highly recommend Dr. Jeremy Fogelson. I had great results.

Here is my story and another, and links about him. If you have further questions about any of it, please ask. His surgery changed my life and is the reason that I volunteer on Connect.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-scoliosis-screening/

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