Severe spinal stenosis: Would you do surgery?

@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?

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?

Get the best surgeon you can, when you need to. Both my father and uncle are in wheelchairs from botched surgeries! Wishing you (and myself) better luck!

I don't know if my legs numbing a lot now are connected to my cervical since both had trauma in the past. I can't tell, but brain images by neurologist show no MS. July 6 another consult since April wit NEUROSURGEON. I can't get in sooner, but it seems things are progressing.

Unfortunately, combatted TB, Serratia and Aspergillous from Osborn Hospital. Took a year a half to overcome. Damaged my lungs. Respiratory dings. Hospital pathogens. I had two cervical ops already. 2002 and 2020. Clavicle 2021 (2x).

I tried to back down my exercise to a moderate level. I was told stenosis, compressed spinal cord can be combated with exercise. I don't see that happening. C3-5 is affected. Will that surgery help a lot of numbness in legs too? Can I still rehab the clavicle break with a neck operation? Healthy10

Not a lot of options for best surgeon with my insurance.

I know symptoms since I was losing reflexes in 2002 from Severe Accident, red-light runner roll over. No $$. I already had two surgeries, one C5-6, 2002, C6-7, 2020. Doomed for another, I guess. Don't want paralysis. But have only a consult July 6. If I go to ER will surgery happen?

I had front cervical surgery two times. First one, great, second on, took 3 months to stop radiculopathy. Now, legs are numbing too much, but had since 2002, worse now. Not sure of origin since lumbar has severe stenosis too. All due to accident...

I know this will not answer your question, but it may give you some strength. There are many questions about our bodies which do not have either easy or plain answers. In these questions, one must do the best you can with what you have, and commit to living full blast with what you have left over. I have several stenoses and cancers and a bunch of other stuff which makes scrambles out of diagnoses and therapies. But I learned a simple truth while milking cows. When you grab and squeeze, you live with what comes out. Some of my therapies have gone backwards quickly. But the only ones I regret are the ones performed by medicos who just wanted the money, and I was chicken to say "No!" So grab and squeeze, and celebrate that you have lived long enough to know you should have tried something different! oldkarl

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.