Severe spinal stenosis: Would you do surgery?

Hi I am also a Mayo Spine surgery patient. I had spinal decompression C3-C5. I also had spinal decompression of L3-L4. I dont want to worry you or scare you in anyway, but it is a rough surgery . I also was losing feeling and strength on one side along with tingling in 3 of my fingers. It was also noted I had claudication in the cervical area compressing my spine to the point it could have left me paralyzed. My surgeon Dr. Clifton compared said if I did not do something I would be like Christopher Reeve ( the actor who played Superman) & be in a wheelchair. I had no choice Feb 2021 I had the cervical decompression without fusion but was told I may have to have it down the road. It was the roughest recovery I have ever had . I too was very active, but my whole life has changed . I am not the same as I used to be yes 6 weeks later in April of 2021 they decompressed my lumbar area. The recovery from that was a bit easier, but I was still trying to recover from the Cervical one . Again you will need help after the surgery as you can not move like you are used to until some nerves recover . If you have fusion of the cervical area you will absolutely lose some range of motion. It's been a battle for me as I am not the same person I used to be I have always been independent .I dont like to ask for help & wish I could return to the person I was . I had no choice or else I would be paralyzed. I am now facing another herniated disk in my neck cervical area which is causing problems & am hoping It won't lead to fusion because that is more of a recovery time . Again I dont mean to scare you and I dont want to sugar coat anything . Its rough I never felt so much pain in my life. But it was that or a wheelchair so I had to do it . My 2 Surgeons at Mayo were awesome Dr. CLIFTON who has since left he was awesome, and Dr. GREWAHL they both were wonderful. Now I am facing bilateral knee replacement as my walking gait has now inflamed my lower lumbar area and hoping I did not do any damage to it . It has been extremely hard to walk & am back to some tingling sensations. I wish the best for you & please make sure you have a good surgeon and do your research on hom or her . I have been lucky enough to have Mayo for my surgeons and primary care and they have been terrific and I cant thank them enough as for me I am just one of them complicated cases.

I can’t believe how strong you are to go through with the surgeries and deal with so much loss. I know I could never handle it. You are impressive!

@healthy10 Hello and I want to give you a warm welcome to Connect. I am a Mayo spine surgery patient and I had cervical stenosis because of a herniated C5/C6 disc that had collapsed into my spinal cord causing bone spurs to grow there too and push into my spinal cord.

The question that I would ask you is are you willing to accept that you can permanently lose the ability to do the outdoor things that you love because of spinal cord damage? Also keep in mind, that if there is permanent damage to the spinal cord, and depending on where this happens, it also can affect lung function if it damages the path way to the Phrenic nerve which exits the spinal cord around C3, and that would compromise your lung function. I have known 2 people who had compromised lungs from a spinal cord injury and both died too soon because of failing lungs, one in a short 3 to 4 years from the time of the accident. When you can't move the diaphragm properly, the lungs don't inflate and move properly. They accumulate phlegm and it sets up an environment for repeated pneumonia. Your heart will have to work harder because the lungs are not doing their job to gather enough oxygen.

If you become paralyzed, that will add to the problems. Your best chance to correct this in now... as soon as possible. You are already reporting symptoms of neuropathy and/or myelopathy. If you have stenosis impacting your spinal cord, the best you can do on your own is try to maintain proper spinal alignment, but that will not correct stenosis caused by bone spurs, herniated discs or instability that put pressure on the cord. If your vertebrae are moving past each other because the disc is not strong enough to stop it, that adds further risk to damaging your spinal cord, and at some point that damage becomes permanent and you loose function. A common function lost because of spinal cord damage is the voluntary control of the bladder and bowels. Only a spine surgeon can fix this damage to some degree, depending on how far it is advanced. Of course there is always a compromise with surgery, and surgeons try to prevent further damage. I hope by now, you are ready to dial and ask a surgeon for help. You have 4 professional opinions all in agreement. As patients we want to bargain our way out of a predicament like this, and it just can't be done without the help of a skilled surgeon. Yes, I was afraid of surgery, but I was more afraid of being permanently disabled, and I had a chance to change my life.

I was there too and had to make a choice. I had trained for several years to be a professional artist and I had achieved recognition in national competitions, but early on in my career, I suffered a whiplash in a traffic accident. Adding about 18 years of aging to that condition caused a bulging disc to rupture and I all had to do for the disc to break was to turn my head because it was weakened. An injury to a disc causes small cracks in the fibrous outer layer. Normal aging causes discs to loose some moisture and the cracks can open up releasing the jelly like nucleus inside. For me this spine problem came on slowly and I had an unusual presentation of symptoms that made several surgeons not want to help me as I got worse for 2 years. I was loosing the ability to control my arms and do my art work which is what I love doing the most. I needed to be able to walk and use a camera to gather material for paintings and to be strong enough with the endurance to do that. I needed the accuracy and manual dexterity to control my brushes. Then I came to Mayo for help. A wonderful surgeon gave me my life back, and the ability to control my arms again. So what was the first thing I did when I was recovered enough to paint again? The answer can be found in the following story.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Aging will cause further deterioration. You have one chance to make the right choice and the sooner you commit to this journey, the better it will be. Not everyone gets to choose if they will become disabled or not. What will your choice be? Can I be of further help in understanding the process and facing the fear?

Hi I am also a Mayo Spine surgery patient. I had spinal decompression C3-C5. I also had spinal decompression of L3-L4. I dont want to worry you or scare you in anyway, but it is a rough surgery . I also was losing feeling and strength on one side along with tingling in 3 of my fingers. It was also noted I had claudication in the cervical area compressing my spine to the point it could have left me paralyzed. My surgeon Dr. Clifton compared said if I did not do something I would be like Christopher Reeve ( the actor who played Superman) & be in a wheelchair. I had no choice Feb 2021 I had the cervical decompression without fusion but was told I may have to have it down the road. It was the roughest recovery I have ever had . I too was very active, but my whole life has changed . I am not the same as I used to be yes 6 weeks later in April of 2021 they decompressed my lumbar area. The recovery from that was a bit easier, but I was still trying to recover from the Cervical one . Again you will need help after the surgery as you can not move like you are used to until some nerves recover . If you have fusion of the cervical area you will absolutely lose some range of motion. It's been a battle for me as I am not the same person I used to be I have always been independent .I dont like to ask for help & wish I could return to the person I was . I had no choice or else I would be paralyzed. I am now facing another herniated disk in my neck cervical area which is causing problems & am hoping It won't lead to fusion because that is more of a recovery time . Again I dont mean to scare you and I dont want to sugar coat anything . Its rough I never felt so much pain in my life. But it was that or a wheelchair so I had to do it . My 2 Surgeons at Mayo were awesome Dr. CLIFTON who has since left he was awesome, and Dr. GREWAHL they both were wonderful. Now I am facing bilateral knee replacement as my walking gait has now inflamed my lower lumbar area and hoping I did not do any damage to it . It has been extremely hard to walk & am back to some tingling sensations. I wish the best for you & please make sure you have a good surgeon and do your research on hom or her . I have been lucky enough to have Mayo for my surgeons and primary care and they have been terrific and I cant thank them enough as for me I am just one of them complicated cases.

Hi I am also a Mayo Spine surgery patient. I had spinal decompression C3-C5. I also had spinal decompression of L3-L4. I dont want to worry you or scare you in anyway, but it is a rough surgery . I also was losing feeling and strength on one side along with tingling in 3 of my fingers. It was also noted I had claudication in the cervical area compressing my spine to the point it could have left me paralyzed. My surgeon Dr. Clifton compared said if I did not do something I would be like Christopher Reeve ( the actor who played Superman) & be in a wheelchair. I had no choice Feb 2021 I had the cervical decompression without fusion but was told I may have to have it down the road. It was the roughest recovery I have ever had . I too was very active, but my whole life has changed . I am not the same as I used to be yes 6 weeks later in April of 2021 they decompressed my lumbar area. The recovery from that was a bit easier, but I was still trying to recover from the Cervical one . Again you will need help after the surgery as you can not move like you are used to until some nerves recover . If you have fusion of the cervical area you will absolutely lose some range of motion. It's been a battle for me as I am not the same person I used to be I have always been independent .I dont like to ask for help & wish I could return to the person I was . I had no choice or else I would be paralyzed. I am now facing another herniated disk in my neck cervical area which is causing problems & am hoping It won't lead to fusion because that is more of a recovery time . Again I dont mean to scare you and I dont want to sugar coat anything . Its rough I never felt so much pain in my life. But it was that or a wheelchair so I had to do it . My 2 Surgeons at Mayo were awesome Dr. CLIFTON who has since left he was awesome, and Dr. GREWAHL they both were wonderful. Now I am facing bilateral knee replacement as my walking gait has now inflamed my lower lumbar area and hoping I did not do any damage to it . It has been extremely hard to walk & am back to some tingling sensations. I wish the best for you & please make sure you have a good surgeon and do your research on hom or her . I have been lucky enough to have Mayo for my surgeons and primary care and they have been terrific and I cant thank them enough as for me I am just one of them complicated cases.

Severe Stenosis, compressed C3-5, active lifestyle. Told by a neurosurgeon, neurologist, orthopedic surgeon and PT I must have several fusions to avoid paralysis. Told I missed a spinal cord injury on last Nov. fall on hike that broke my clavicle. Still healing clavicle in PT after removing metal from severe break. I atrophied. I have neuropathy in limbs at times, radiating pain down arms. Legs have more sporadic numbing and sharp pain sitting, lying down... in feet too. I am doing less now, but love hiking, biking, yoga, travel, working out being strong. I am only able to see one neurosurgeon with my insurance. He is rated well.

A nurse gave a seminar with a handbook which stated activities can combat stenosis. I realize mine advanced more, but can activity change this condition?

I have many surgeries and metal pieces due to a trauma. Red light runners caused damaged.

What do you suggest?

Hello @healthy10. I'd also like to welcome you to Mayo Clinic Connect, along with @jenniferhunter. It certainly sounds like your health is important to you with the number of activities/hobbies you shared.

Because there was a similar discussion already started, you will notice that I have moved your post to join that discussion.

I will let you respond to Jennifer but am curious what your hesitancy would be to heed the advice of your neurosurgeon with regard to the fusions to avoid paralysis?