Hi Ray,
What may help is a really good physical therapist. They look at the mechanics and body alignment, and can give good insights into when a problem should turn toward a surgical solution because they work with a lot of surgical patients before and after surgery. They also tend to know what specific surgeons do because of working with their patients. If you are already working with a PT, you could ask their opinion.
As for myelopathy, it can affect balance, and early myelopathy may not show on an MRI. When it does start showing up, there will be a whitish area within the spinal cord on an MRI and that is when the nerve axons start to die off and becomes permanent damage. You do not need to wait for that to happen. Go by your own symptoms combined with the surgeon's opinion. I waited 2 years for decompression of my spinal cord, not because I wanted to, but because I couldn't find a surgeon who was willing to help me. MY PT said that she thought it was best to have surgery within about 6 months of the start of the symptoms, but only a surgeon can make the call. If you feel your surgeon is waiting too long, speak up. If a situation becomes urgent because you know what you are living with, you have to tell them. They have schedules that allow for emergency surgeries and are usually in a rotation for emergency calls with the others at their facility.
I never had any whitish areas in my spinal cord on imaging, but I did have myelopathy with muscle atrophy in my deltoids and had lost about half the muscle mass. I got about half of what I lost back and there is still a bit of a deficit even after 5 years post op. I didn't see it happening because it was on the back side, but there was increasing pain. You might ask your PT if any muscle atrophy is showing up for you.
You are right that balance involves everything and even vision and hearing play a role. You won't be able to hold your balance as long with your eyes closed. Hearing is involved with 3 dimension understanding of the space around you and your inner ears tell your body if you are right side up or not. Your brain listens to signals from your body too for feedback on balance. Your PT can explain it.
Did your surgeon expect to be doing surgery for you in March? That is just 3 months away, so not too long to wait.
Hi, Jennifer (@jenniferhunter),
How nice to be in touch again!
I've been working with an excellent physical therapist since my neurosurgeon advised us not to jump right into surgery but take a more conservative approach: try physical therapy for six months, then let's talk again. I'll be going back to see him next March. Our meeting then will be to decide if surgery is called for, further physical therapy, or just what might seem the best route. At the moment, I'm on a physical therapy hiatus: after two six-session approvals by my insurance, I reached the last of my approved sessions. My therapist plans to reapply for more sessions after the first of the year; as that's only two weeks away, I can be patient. In the meantime, I'm doing here at home all the stretching exercises she taught me.
It is difficult to say when you're working with a new doctor, whether his advice is sound or it's time to insist on a more assertive approach to treatment. In March when I see my neurosurgeon again, and if I feel I've gotten nowhere with physical therapy, certainly I'll speak up and say I'm ready to give surgery a go. If that should happen, what he'll say I've no way of knowing just now. When he and I met last fall, and I explained that my chief (almost only) complaint was gait difficulty, he responded by saying (and I believe wisely) that we could do surgery for what he regards as "borderline" myelopathy, and I'd find that that issue by itself wasn't the cause of my gait troubles.
That's why I thought in the meantime I'd look for a practitioner who could pull together my various trouble-spots (borderline myelopathy, bad feet, bad knee, bad hip) and suggest some sort of whole person (holistic) diagnosis: perhaps my wobbly walking is not caused by only THIS or only THAT, but by ALL of my weaknesses working in tandem, resulting in my poor balance. (When I get back to physical therapy, I intend to inquiry about "walking coaching." I'm sure I could gain by being taught how to relearn proper walking.)
My primary has asked if I'd like to see a psychiatrist. That's a medical specialty I'd not heard of before! Have you?
I've taken up enough of your good time, Jennifer. As always, I love getting your insights. And as I said at the top, it's great to be in touch again!
Ray (@ray666)