Cervical stenosis: Wait or treat?

@mincer I understand being caught between what your imaging report says and your surgeon's wait and see approach. I can't give you medical advice because I am a patient and not a medical professional. However, having a report that says you have severe central spinal canal stenosis and severe foraminal stenosis (where the nerves exit the spine) is a cause for concern. I have had ACDF surgery and I did not wait until my reports said I had severe stenosis. I think mine was listed as moderate and that was putting me in pain.

What are the symptoms that your surgeon is expecting you to have? Spine problems can be different for everyone and some people with compressed spinal cords do not even know they have a spine issue. Some people have a lot of pain. I had pain all over which confused a lot of surgeons and they were afraid to operate. Surgeons don't even promise that their surgery will fix pain, so I don't see that a reason to decide for or against surgery. What surgery does is decompress the spinal cord and the pressure on the nerve roots and it should be done before permanent damage happens. They are looking to preserve function and prevent further damage.

If you have a copy of your MRI on disc, you can take that to another surgeon for a 2nd opinion. Always retain a copy for yourself and they can copy it into their computer network when you are at an appointment. This surgeon may be hoping you'll go elsewhere if your case looks like it may not have a good result for him that would affect his ratings of successful procedures. That is something doctors worry about and insurance companies use this to rate surgeons as well. Surgeons also try to wait as long as possible because fusing the spine puts pressure on the discs above and below it, which can then fail and cause the need for more surgery. Those are considerations, and only you can decide what is right for you. I had 5 surgeons refuse me over 2 years time and just waste my time. that cost me some atrophied muscle in my shoulders and arms which I did not fully get back after I had surgery, but I got about 75% of what I used to have before the spine problem began. As the patient, you will need to advocate for what you think is right and not depend on the whim of a surgeon who is trying to decide if he wants you as a patient. A lot of surgeons do cherry pick the cases they want and throw the others back into the pond. I would have agreed to spine surgery much sooner if I could have found a surgeon who would help and it is very distressing to jump through hoops for 6 months doing any test a surgeon wants only to have him refuse a surgical intervention. That was what was so very different when I came to Mayo to see my 6th surgeon. There were no games, and only a couple days of testing and imaging and I was offered a solution right away. I didn't know it could be like that, and I wish I had come to Mayo first.

The spinal cord will start to die if it is compressed too much and will show up on the MRI as a whitish area inside the spinal cord as myelopathy or myelomalacia (which is damage from inflammation or if the blood supply is cut off to the spinal cord). The nerve cells just literally die and dissolve into the spinal fluid. That is what you want to prevent and the permanent disability that goes with it.

Here is some imaging that you can scroll through to understand in 3 D to see spinal cord damage. Click on one of the images and then drag the slider up or down on the right side. These images represent the same location in different planes or slices through the spinal cord.
https://radiopaedia.org/cases/cervical-myelopathy?lang=us
Have you considered a second opinion? or more?

Hello, all! I'm already feeling like an old-timer around here. I've one question this afternoon, and I'll try to be brief: I'm 76. I've been diagnosed with cervical myelopathy, and have been offered (although I've yet to say yay or nay) outpatient C5-7 ACDF surgery. My only complaint is my unsteady gait; although I've not fallen, I believe it's only a matter of time. Otherwise, I've no complaints (and no pain). My question (a three-parter) is this: Have any of you had a similar problem with your walking (balance)? Did you undergo outpatient ACDF surgery? and (finally!) what was the outcome? (Did your walking improve and to what degree?) Thanks! ––Ray

@ray666 Hi Ray, Jennifer here with an answer to all 3 of your questions... YES... YES... and YES.

I had an unsteady gait and walked with a limp during the times when I had more pressure on my already compressed spinal cord when the vertebrae were shifted by a muscle spasm. It was an intermittent problem and when my therapist realigned my vertebrae toward a normal curvature and straightened out the twisted vertebrae, I walked normally again.... until the next spasm threw it off again.

Yes ACDF C5/C6 with only a cadaver bone spacer and no hardware.

The outcome is I walk normally now and you have heard all my stories about how I regained my functioning of my arms. I have not had any unsteady gait at all since my surgery, other than rehab after a broken ankle last year. I also used to get vertigo from my spine issues and that stopped and muscle spasms were much better after surgery. I may have something happening now and I have an MRI scheduled to find out. It has been 5 years since the original surgery.

Thank you 🙏 very kindly for your kind words and feed back xxx my first appointment with an neurosurgeon he told me I was okay and all good 🙁 so this is my second opinion with this neurosurgeon and I had to pay out of pocket which is difficult for me I am on my own and not working my husband passed away in 2019 and my job in childcare I cannot go back to full time as the way I feel now and if go to out patients ( public ) is what it is called here in Australia I most probably get the same surgeon I see in the first place (: and if I see another surgeon out of pocket you have to be in health insurance for them to see you so that won’t happen for me I cannot afford health insurance xx it’s a struggle I know my self how I feel and they don’t seem to listen unless I fit into their box of what is right I understand exactly what you are saying this is why I talk to people like you who understand what I am going through I will try and get to see another public hospital doctor but I don’t have many options to go to xxx take care and be safe xxxx

Good morning, Jennifer

You are a lifeline to me in this stenosis experience! You can't possibly imagine how much I value your words. I intend to move forward with a balance between caution and courage: caution, so I don't let myself get bamboozled by medical over-sell; courage, so I don't shy away from a procedure that has real promise of helping. Maintaining that balance: that's where your words have been of such help.

I can only hope that someday I can be of help to others the way you have been––and continue to be––to me.

Have a wonderful weekend!
Ray

@mincer I am sorry about the loss of your husband. That must make everything so much more difficult. Do you have any options in Australia for charitable care? Spine surgery is so expensive that you really need health insurance in order to pay for it, at least here in the US so I understand the difficulty you are having. Perhaps this is why the surgeon has a wait and see approach. Do you have family that can help? You might try contacting hospital administrators to ask if a hospital takes charity cases. Are there any government assistance agencies you can contact? There are also online fundraising sites like Go Fund Me if you are on social media where you can tell your story and ask for donations for your care. I am sure you are in pain. Is surgery something you would do if it was offered to you?

@ray666 Thank you for your kind words. Spine surgery changed my life completely and I learned a lot about myself and overcoming adversity, and it gives a lot of meaning to me to share what I can because spine surgery is something that needs a lot of discussion to make an educated choice. Balance is good and finding the right surgeon. I'm sure your conversation is helping others who are reading the discussions.

Hi, Jennifer. I met with the surgeon last Wednesday. Having had a chance to look over my latest imagining (another MRI and some next flexion X-rays) he advised no surgery at this time. He repeated saying my case is "borderline." He went on to say since my sole complaint is a wobbly walk (with no pain) that we put my case on a watch-and-see basis at least for six months, that I continue with my cervical PT and, should I have the slightest downturn in my symptoms I go back to see him immediately. To be honest, he said, if we did the surgery, there'd be no guarantee that my wobbly walk would go away, that my "borderline" C 5-7 problem is the cause of my unsteady gait. I'm reasonably content with a six-month wait-and-see approach, although the next day I thought, 'Mmm, this is both good and bad news.' The good news: no surgery, at least not now. The bad news: I can no longer be sure that cervical stenosis is the cause (or sole cause) of my walking difficulty. So, we'll see. As always, Jennifer, thank you a millionfold for all of your advice! Best wishes, Ray

@ray666 Thank you for your update. It sounds like your doctor doesn't know either was is causing your gait issues, so it will be up to you to advocate for yourself. You can also seek another opinion. You may want to keep a journal of symptoms with time of day and the activity you were doing at the time. This will tell you if things are changing. Surgeons usually don't make promises to take away pain, and they do surgery so things won't get worse, so don't let that throw you off. If the cervical spine issue is causing the gait instability, surgery may be able to help. It did for me. My gait was unsteady when muscle spasms moved my vertebrae and changed the curvature in my neck, then my PT would realign my neck, and my gait returned to normal, so I knew it was related. Essentially when the vertebrae were moved, it effectively made the spinal canal smaller putting more pressure on my compressed spinal cord.

Hi, Jennifer. I'm doing precisely that: keeping a detailed log. Reading what you say in your message, I wonder if there's a bearing on my situation. You mention your vertebrae "moving" and putting pressure on your already compressed spinal cord. One of the things my surgeon said was that––from my recent neck flexion imaging––my vertebrae appeared stable. It seems that had a good deal to do with his recommendation that we hold off surgery, at least for the present. In the meantime, I'll continue with my once-a-week cervical PT (heading off for that in just a few minutes). As ever, thank you for being there for me! It means a lot. ––Ray