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 Support Group.

@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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@stantallusa

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

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@stantallusa I wanted to check in with you and see how you are doing in seeking treatment at Mayo. I hope it all works out for you as that is a wonderful place to be.

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@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.

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So happy for you. I tried very hard to get into Mayo. Sent reports and images. Kept fingers crossed. Just got a letter today telling me they would not take my case. A real downer.
I am going to be forced to either remain crippled and cope or throw the dice on one of the local doctors. Oh well.
I guess it was like the merry go rounds when I was a kid. There was a ring that you would try to get as you went up and down and round and round. I missed the ring.

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@stantallusa

So happy for you. I tried very hard to get into Mayo. Sent reports and images. Kept fingers crossed. Just got a letter today telling me they would not take my case. A real downer.
I am going to be forced to either remain crippled and cope or throw the dice on one of the local doctors. Oh well.
I guess it was like the merry go rounds when I was a kid. There was a ring that you would try to get as you went up and down and round and round. I missed the ring.

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@stantallusa Oh, I am sorry it didn't work out. I do know how that feels because I was turned away by 5 local surgeons before I came to Mayo. I do think it helps to focus on what ever the main issue is when you apply for treatment. Surgery can also make a patient worse, and a doctor even told me that because he misunderstood my case. I know Mayo gets many more requests for appointments for neuropathy than their availability. I got in because of a structural spine problem that could be fixed by surgery, so it was a clear cut case and I had not had other spine surgeries or scar tissue that would affect my spine.

Would you consider seeking treatment at other multi-specialty medical center like Cleveland Clinic? They are similar in approach to Mayo from what I have heard. I don't know the specifics of your case, but sometimes it helps to find medical literature with similar cases. That helped me because I found what the doctors had missed, so when I asked for help at Mayo, I sent the medical literature in with my request. If you wish to share information, I can try to help search for medical literature of similar cases. May I ask what it is that is crippling you and if it is something that can be treated?

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Hello, @collierga! Hello again, @jenniferhunter! Mind if I join in? I'm finding this exchange most interesting, mostly because my No.1 complaint is an uncomfortable gait. I have no pain, and no numbness, unless it's so slight I'm unawares. A neck MRI showed cervical stenosis in a number of places and in varying degrees of severity. Up until now, I've been meeting with a very knowledgeable neurology PA. In light of my MRI, she has advised I begin neck PT (next week) and meet with a neurosurgeon (week after next). Like others posting here, I'm furiously learning all I can about cervical stenosis, my chief aim is to have a full set of questions ready for when I meet with the neurosurgeon. In the meantime, I'm doing modest neck exercises (gleaned from YouTube stenosis sites) and am looking forward to beginning neck PT. The last few years, whenever a physician has asked me what's the No. 1 quality of good health I'd like to recover, I answer: to be able to enjoy walking again! ––Ray

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Hi there
Sorry to hear about problems with your gait
I researched a lot . My gait is a little “Gimby” and have numbness in fingers snd toes. I saw 2 different Neurosurgeons, both with a very different opinions. One wanted to do 2 surgies one from front and one from the back. The other surgeon recommendation was conservative treatment . His theory was if no pain and not really affecting lifestyle hold off on surgery
That was 2 years ago. I try to exercise 3-4 times a week concentrating on keeping legs strong . I don’t know where you are from but I found a Essentrics class that I love and credit it for keeping me out of surgery .
Good luck keep researching

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@ray666

Hello, @collierga! Hello again, @jenniferhunter! Mind if I join in? I'm finding this exchange most interesting, mostly because my No.1 complaint is an uncomfortable gait. I have no pain, and no numbness, unless it's so slight I'm unawares. A neck MRI showed cervical stenosis in a number of places and in varying degrees of severity. Up until now, I've been meeting with a very knowledgeable neurology PA. In light of my MRI, she has advised I begin neck PT (next week) and meet with a neurosurgeon (week after next). Like others posting here, I'm furiously learning all I can about cervical stenosis, my chief aim is to have a full set of questions ready for when I meet with the neurosurgeon. In the meantime, I'm doing modest neck exercises (gleaned from YouTube stenosis sites) and am looking forward to beginning neck PT. The last few years, whenever a physician has asked me what's the No. 1 quality of good health I'd like to recover, I answer: to be able to enjoy walking again! ––Ray

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@ray666 Hi Ray. I had gait issues too. Those were intermittent and happened when muscle spasms moved my vertebrae a little bit which essentially made the spinal canal a little smaller and put some pressure on the spinal cord. When my physical therapist realigned my neck, I walked normally again. My PT was buying me some time and reducing my symptoms. That was during the time that I was having trouble getting a surgeon interested in my case.
During my research prior to my spine surgery, I compiled a list of possible questions to ask. Surgeons don't have time to answer all of these, and you may choose what is most important. What other questions would you add?

1. What type of surgery are you recommending? Why? What is the specific anatomic lesion being addressed?

2. What is the natural course of my condition if it is not surgically addressed?

3. Why does the surgeon recommend this specific procedure? What are the potential results for this surgery? Why am I a good candidate for this surgery?

4. What is the source of the pain that is being addressed? How do you know this?

5. Please explain the procedure in great detail.

6.What products and implants are used? Is everything to be used FDA approved for this application?

7. What are the chances that the osteophytes will regrow? If so, what will minimize that chance?

8. What are my non-surgical options?

9. What are the different surgical procedures that can address my problem?

10. What would you recommend if I was your friend, wife, sister, or daughter?

12. How long will the surgery take?

13. What are the side effects, potential risks, and potential complications?

14. Please explain the risks and how they relate to me personally.

15. Reactions to implants, metal sensitivities, plastic sensitivities, toxicities?

16. Can there be lingering problems with dysphagea (swallowing) or dysphonia (speaking) due to procedure or implant? Breathing?-- asthma, swelling in neck?

15. What happens to an artificial disk as it wears? How long would it last? Any not made of metals?
Are the metals used the same or different within the implant?

16. How great is risk of adjacent segment disk degeneration with a fusion? Are there other discs that show degeneration now that could become problematic in the future? Do you think I will have a problem in the future on adjacent levels?

17. Do I have to have a metal plate or hardware on my spine? Is there another way to stabilize the spine?

18. What if, during my surgery, you encounter a different spine issue than you expected?

19. What is the risk/benefit ratio (the chance of a bad outcome as weighed against the chance of a good outcome)?
Do any of the materials used increase my chances of getting cancer?

20. What are the standard safety procedures to insure my safety during the surgery?
What are the safety cross check procedures during surgery?

21.What kind of imaging is used during the procedure and how does it tell you what you need to know?

22. Do you use neuro-monitoring during surgery? Are there electrodes on extremities making sure the nerves are functioning?

23. Are you using robotic assistance or free-handing?

21. Do I need to donate my own blood? If yes, why?

22. Do you perform the whole procedure? Will any students and/or other surgeons be doing any parts of the operation? If yes, What are their background and qualifications?

23. Can I talk to other patients who have had a similar procedure? ( Yes you can on Connect.)

24. What are the long-term consequences of the proposed procedure?

***************************************************************************

Questions about the surgeon
1. How many times have you done this procedure?

2. Are you fellowship trained in spine surgery?
This is more important if the surgery is a fusion, artificial disc replacement, or other more extensive procedure.

3. If I want to get a second opinion, who would you recommend?

4. Statistically, what is the success rate for this type of surgery? What is your personal success rate, and how many of this type of surgery have you done?

REPLY
@jenniferhunter

@ray666 Hi Ray. I had gait issues too. Those were intermittent and happened when muscle spasms moved my vertebrae a little bit which essentially made the spinal canal a little smaller and put some pressure on the spinal cord. When my physical therapist realigned my neck, I walked normally again. My PT was buying me some time and reducing my symptoms. That was during the time that I was having trouble getting a surgeon interested in my case.
During my research prior to my spine surgery, I compiled a list of possible questions to ask. Surgeons don't have time to answer all of these, and you may choose what is most important. What other questions would you add?

1. What type of surgery are you recommending? Why? What is the specific anatomic lesion being addressed?

2. What is the natural course of my condition if it is not surgically addressed?

3. Why does the surgeon recommend this specific procedure? What are the potential results for this surgery? Why am I a good candidate for this surgery?

4. What is the source of the pain that is being addressed? How do you know this?

5. Please explain the procedure in great detail.

6.What products and implants are used? Is everything to be used FDA approved for this application?

7. What are the chances that the osteophytes will regrow? If so, what will minimize that chance?

8. What are my non-surgical options?

9. What are the different surgical procedures that can address my problem?

10. What would you recommend if I was your friend, wife, sister, or daughter?

12. How long will the surgery take?

13. What are the side effects, potential risks, and potential complications?

14. Please explain the risks and how they relate to me personally.

15. Reactions to implants, metal sensitivities, plastic sensitivities, toxicities?

16. Can there be lingering problems with dysphagea (swallowing) or dysphonia (speaking) due to procedure or implant? Breathing?-- asthma, swelling in neck?

15. What happens to an artificial disk as it wears? How long would it last? Any not made of metals?
Are the metals used the same or different within the implant?

16. How great is risk of adjacent segment disk degeneration with a fusion? Are there other discs that show degeneration now that could become problematic in the future? Do you think I will have a problem in the future on adjacent levels?

17. Do I have to have a metal plate or hardware on my spine? Is there another way to stabilize the spine?

18. What if, during my surgery, you encounter a different spine issue than you expected?

19. What is the risk/benefit ratio (the chance of a bad outcome as weighed against the chance of a good outcome)?
Do any of the materials used increase my chances of getting cancer?

20. What are the standard safety procedures to insure my safety during the surgery?
What are the safety cross check procedures during surgery?

21.What kind of imaging is used during the procedure and how does it tell you what you need to know?

22. Do you use neuro-monitoring during surgery? Are there electrodes on extremities making sure the nerves are functioning?

23. Are you using robotic assistance or free-handing?

21. Do I need to donate my own blood? If yes, why?

22. Do you perform the whole procedure? Will any students and/or other surgeons be doing any parts of the operation? If yes, What are their background and qualifications?

23. Can I talk to other patients who have had a similar procedure? ( Yes you can on Connect.)

24. What are the long-term consequences of the proposed procedure?

***************************************************************************

Questions about the surgeon
1. How many times have you done this procedure?

2. Are you fellowship trained in spine surgery?
This is more important if the surgery is a fusion, artificial disc replacement, or other more extensive procedure.

3. If I want to get a second opinion, who would you recommend?

4. Statistically, what is the success rate for this type of surgery? What is your personal success rate, and how many of this type of surgery have you done?

Jump to this post

Oh, wow, Jennifer, I think if Ihad all the time in the world I'd never manage to compile a list of questions as extensive as this! Thank you! Thanks to you I'm feeling more knowledgeable and prepared than I could ever have achieved on my own. A side note: this morning I had to report to my orthopedist's office on the sccess of a knee injection I was given two weeks ago. (Just another arthritis SuperFund site!) I made my report, but added that I'm going to give this stenosis my full attention for now, at least until I've a clear idea f what the future holds. My achy knee is just going to have to wait. ––Ray

REPLY
@jenniferhunter

@ray666 Hi Ray. I had gait issues too. Those were intermittent and happened when muscle spasms moved my vertebrae a little bit which essentially made the spinal canal a little smaller and put some pressure on the spinal cord. When my physical therapist realigned my neck, I walked normally again. My PT was buying me some time and reducing my symptoms. That was during the time that I was having trouble getting a surgeon interested in my case.
During my research prior to my spine surgery, I compiled a list of possible questions to ask. Surgeons don't have time to answer all of these, and you may choose what is most important. What other questions would you add?

1. What type of surgery are you recommending? Why? What is the specific anatomic lesion being addressed?

2. What is the natural course of my condition if it is not surgically addressed?

3. Why does the surgeon recommend this specific procedure? What are the potential results for this surgery? Why am I a good candidate for this surgery?

4. What is the source of the pain that is being addressed? How do you know this?

5. Please explain the procedure in great detail.

6.What products and implants are used? Is everything to be used FDA approved for this application?

7. What are the chances that the osteophytes will regrow? If so, what will minimize that chance?

8. What are my non-surgical options?

9. What are the different surgical procedures that can address my problem?

10. What would you recommend if I was your friend, wife, sister, or daughter?

12. How long will the surgery take?

13. What are the side effects, potential risks, and potential complications?

14. Please explain the risks and how they relate to me personally.

15. Reactions to implants, metal sensitivities, plastic sensitivities, toxicities?

16. Can there be lingering problems with dysphagea (swallowing) or dysphonia (speaking) due to procedure or implant? Breathing?-- asthma, swelling in neck?

15. What happens to an artificial disk as it wears? How long would it last? Any not made of metals?
Are the metals used the same or different within the implant?

16. How great is risk of adjacent segment disk degeneration with a fusion? Are there other discs that show degeneration now that could become problematic in the future? Do you think I will have a problem in the future on adjacent levels?

17. Do I have to have a metal plate or hardware on my spine? Is there another way to stabilize the spine?

18. What if, during my surgery, you encounter a different spine issue than you expected?

19. What is the risk/benefit ratio (the chance of a bad outcome as weighed against the chance of a good outcome)?
Do any of the materials used increase my chances of getting cancer?

20. What are the standard safety procedures to insure my safety during the surgery?
What are the safety cross check procedures during surgery?

21.What kind of imaging is used during the procedure and how does it tell you what you need to know?

22. Do you use neuro-monitoring during surgery? Are there electrodes on extremities making sure the nerves are functioning?

23. Are you using robotic assistance or free-handing?

21. Do I need to donate my own blood? If yes, why?

22. Do you perform the whole procedure? Will any students and/or other surgeons be doing any parts of the operation? If yes, What are their background and qualifications?

23. Can I talk to other patients who have had a similar procedure? ( Yes you can on Connect.)

24. What are the long-term consequences of the proposed procedure?

***************************************************************************

Questions about the surgeon
1. How many times have you done this procedure?

2. Are you fellowship trained in spine surgery?
This is more important if the surgery is a fusion, artificial disc replacement, or other more extensive procedure.

3. If I want to get a second opinion, who would you recommend?

4. Statistically, what is the success rate for this type of surgery? What is your personal success rate, and how many of this type of surgery have you done?

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I love your questions
In my opinion if doctor does not have time to answer my questions he is not a good fit for me

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