My "superfund sites" (myelopathy, bad feet, knees & hip)

Posted by raykemble @ray666, Dec 17, 2021

Hello, all! I've not posted in a long time. I hope you're all doing well. May I give you a brief update on what's been happening in my life, with my balance issues? I believe the last time I posted I had just had my second meeting with my neurosurgeon. That's when I was told that my cervical myelopathy was "borderline" and not urgently operable; I was advised to continue with cervical PT and to return in six months (next March). In the meantime, because I also have an arthritic left knee (my right is already titanium) and an arthritic left hip, I've been seeing an orthopedic surgeon. He too doesn't advise surgery (more replacements); instead, he's given me a series of injections (cortisone and gel). The injections have provided some relief. The quandary I find myself in is finding one practitioner who can give me a top/down evaluation, some sort of holistic evaluation (while yet covered by my medical insurance). As the years have gone by, I have become more and more convinced that my balance difficulties are not the exclusive result of any one of my body's "superfund sites" (neck, hip, knee; flat feet, too), but a combination of all of them. Have any of you found yourself in a similar quandary? Were you successful at finding that "perfect" practitioner who was able to evaluate you as a whole human being? ––Ray

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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.

REPLY
@jenniferhunter

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.

Jump to this post

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)

REPLY
@ray666

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)

Jump to this post

Ray, @ray666

While it is possible that you have several issues contributing to your gait and how well and balanced you can walk, if you have myelopathy or spinal instability as I did, that alone can cause your gait to be unbalanced and make you walk with a sort of limp. I know this because during the time before my spine surgery I was working with a physical therapist and having a lot of spine related muscle spasms in my neck. The spasms would twist or tilt my vertebrae independently and because I had no space left around my spinal cord because of cervical stenosis, it put more pressure on my spinal cord when the vertebrae were moved. I also has 2mm of movement in slipping of vertebrae past each other (retrolisthesis). Effectively, it just made my spinal canal smaller around an already compressed spinal cord.

I experienced intermittent issues where the spasms caused me to limp and there was nothing I could do to stop the limp, and I had trouble emptying my bladder. Both of those symptoms were from spinal cord compression. As soon as my physical therapist corrected my neck vertebrae alignment, I stopped limping and my bladder functioned correctly again. That is why I would question your surgeon's comments about the cause of your wobbly walking. He may be missing the myelopathy component that is a signal that spinal decompression is needed because you also have other issues that affect walking. If he is waiting for permanent damage like a white area showing up inside the spinal cord, that is waiting too long.

I also had dizziness and vertigo when my vertebrae were shifted along with bad occipital headaches. The vertigo was bad enough one time that I actually fell backward when I looked upward at bird flying overhead. Since my spine surgery, I have had no more vertigo. I still can get just a slight rotating of vertebrae if I do something causing a muscle spasm, but it is very minor and I know how to correct it right away.

You can always get a second opinion from someone else and should if your symptoms are increasing and your doctor isn't concerned. It also sounds like your insurance isn't very generous with physical therapy visits. Hang in there.

REPLY
@jenniferhunter

Ray, @ray666

While it is possible that you have several issues contributing to your gait and how well and balanced you can walk, if you have myelopathy or spinal instability as I did, that alone can cause your gait to be unbalanced and make you walk with a sort of limp. I know this because during the time before my spine surgery I was working with a physical therapist and having a lot of spine related muscle spasms in my neck. The spasms would twist or tilt my vertebrae independently and because I had no space left around my spinal cord because of cervical stenosis, it put more pressure on my spinal cord when the vertebrae were moved. I also has 2mm of movement in slipping of vertebrae past each other (retrolisthesis). Effectively, it just made my spinal canal smaller around an already compressed spinal cord.

I experienced intermittent issues where the spasms caused me to limp and there was nothing I could do to stop the limp, and I had trouble emptying my bladder. Both of those symptoms were from spinal cord compression. As soon as my physical therapist corrected my neck vertebrae alignment, I stopped limping and my bladder functioned correctly again. That is why I would question your surgeon's comments about the cause of your wobbly walking. He may be missing the myelopathy component that is a signal that spinal decompression is needed because you also have other issues that affect walking. If he is waiting for permanent damage like a white area showing up inside the spinal cord, that is waiting too long.

I also had dizziness and vertigo when my vertebrae were shifted along with bad occipital headaches. The vertigo was bad enough one time that I actually fell backward when I looked upward at bird flying overhead. Since my spine surgery, I have had no more vertigo. I still can get just a slight rotating of vertebrae if I do something causing a muscle spasm, but it is very minor and I know how to correct it right away.

You can always get a second opinion from someone else and should if your symptoms are increasing and your doctor isn't concerned. It also sounds like your insurance isn't very generous with physical therapy visits. Hang in there.

Jump to this post

Hi Jennifer (@jenniferhunter),

The question that's driving me batty at the moment is just which of my ouches I should deal with first, or should I continue to look for a practitioner who can evaluate the "whole me." To me, that sounds like a dilemma of prioritizing. My ouchiest ouch at the moment is my hip. I know there's arthritis in that hip; that was diagnosed years ago. But has it become so severe that a doctor's intervention is called for? I'm not sure. Not being sure––and because I trust my orthopedist's nurse/practitioner––I sent a note late yesterday asking advice. From past experience, I expect she'll reply with a symptoms yes/no questionnaire. My responses will let her know if it's time for me to come in for a more meaningful examination. (I trust her "boss," too, my orthopedist.)

Meanwhile, life goes on. Being largely retired, I've less need to be out & about. I'm not sure if I mentioned in any of my earlier posts that I'm a retired actor/director (effectively retired, thanks to the pandemic; also, to my myelopathy: more on that in a moment), and still-working writer (luckily, none of my ailments keeps me from pen & paper).

I mention acting and my myelopathy to tell you that my gait difficulties have robbed me of further stage-work. I had to face this new reality when I was in my last show (two years ago, just before Covid), My unreliable balance on stage had become a real challenge: so much of a distraction (to me; no one else seem to notice) that the pleasure of performance was no longer pleasurable. A telling moment was when I had to ask the set designer for a "special favor": a handrail to help me down an on-stage flight of steps, steps that the other actors were able to skip up & down with no trouble. Until I had that handrail to grasp, I'd look at those same steps and think, "Uh-oh … "

I hope you're having a great day, Jennifer. Again, thanks for all of your wise thoughts!

Ray (@ray666)

REPLY
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