Has anyone had cervical myelopathy and ALS?

Posted by larryk1 @larryk1, May 12, 2022

Has anyone ever had csm and Als at the same time?

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Hello @larryk1 and welcome to Mayo Clinic Connect. I'd like to connect you with a member who may be able to share some of her personal experiences with you so I will bring in @jenniferhunter.

How long have you been living with both cervical myelopathy & ALS? What more can you share about your current health and what you are looking to find on Connect?

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@amandajro

Hello @larryk1 and welcome to Mayo Clinic Connect. I'd like to connect you with a member who may be able to share some of her personal experiences with you so I will bring in @jenniferhunter.

How long have you been living with both cervical myelopathy & ALS? What more can you share about your current health and what you are looking to find on Connect?

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I have csm.5 weeks post op.and no progress.just wondering if it is possible to have csm and als at same time.csm and als mimic each other is what I have been reading.also have another mri tomorrow what is doctor looking for? Thank you

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@larryk1

I have csm.5 weeks post op.and no progress.just wondering if it is possible to have csm and als at same time.csm and als mimic each other is what I have been reading.also have another mri tomorrow what is doctor looking for? Thank you

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@larryk1 Oh I understand what it is to be worried about what damage has happened and what the maximum recovery will be after spine surgery. At 5 weeks post-op, it is still very early in your recovery. Did your surgeon order nerve conduction and EMG studies prior to your surgery? Those tests would tell them if nerve signals are being sent properly and correctly received by the muscles. That would be done to rule out a "differential diagnosis" of something else that causes the same symptoms like ALS or MS. MS can show evidence on an MRI.

I don't know anyone with ALS, but I did speak with a couple in a waiting area at Mayo when I was there and the husband had ALS. I could see random spontaneous muscle contractions in his arm and that was going on all the time as he had no control over it. There were small muscles jumping all over the place. With cervical myelopathy (which I had), I did have some jumping muscles in my leg, but it was in specific places that repeated, and if I changed the position of my head and neck which changed where the spinal cord was being contacted by the bone spurs in the central canal, it changed what happened and the muscle contractions would stop or the pain would change to a different place. I had a ruptured disc with an osteophyte complex at C5/C6. I was getting pain all over my body from this which is called funicular pain and that seemed to be pretty random, but it had a pattern and I was tracking it on diagrams I was drawing. In comparison, when nerves are compressed in the foramen (space between vertebrae where nerves exit), the nerve pain and dysfunction is very specific to that nerve and affects a specific body part.

5 weeks after surgery is still early, and my guess would be that your surgeon wants to know if any hardware or implants have been displaced and to check the spinal alignment so he/she knows if anything has physically changed since your surgery. You may be affected by inflammation form he surgery itself.

Would you share what you find out after your MRI?

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I have cervical myelopathy. I cannot bend my head back or look up, at all. I made a mistake and looked up (carefully) for less than a second last week and have a lot of symptoms. Neck and shoulder pain, feet and legs feel "funny" and nerve pain in feet, whole body hurts.

One thing that is new is muscle twitches, which seem to be related to the cervical issue. I really feel them in my face, especially right side, and also right arm. I can see why the cervical myelopathy might resemble ALS in some respects.

I am thinking of wearing a medical alert bracelet that says "do not bend my head back.." My neuro wrote me a note for surgery that they could not bend my neck. Good luck to everyone. I am just waiting for things to go back to baseline but it is taking longer than usual!

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@jenniferhunter

@larryk1 Oh I understand what it is to be worried about what damage has happened and what the maximum recovery will be after spine surgery. At 5 weeks post-op, it is still very early in your recovery. Did your surgeon order nerve conduction and EMG studies prior to your surgery? Those tests would tell them if nerve signals are being sent properly and correctly received by the muscles. That would be done to rule out a "differential diagnosis" of something else that causes the same symptoms like ALS or MS. MS can show evidence on an MRI.

I don't know anyone with ALS, but I did speak with a couple in a waiting area at Mayo when I was there and the husband had ALS. I could see random spontaneous muscle contractions in his arm and that was going on all the time as he had no control over it. There were small muscles jumping all over the place. With cervical myelopathy (which I had), I did have some jumping muscles in my leg, but it was in specific places that repeated, and if I changed the position of my head and neck which changed where the spinal cord was being contacted by the bone spurs in the central canal, it changed what happened and the muscle contractions would stop or the pain would change to a different place. I had a ruptured disc with an osteophyte complex at C5/C6. I was getting pain all over my body from this which is called funicular pain and that seemed to be pretty random, but it had a pattern and I was tracking it on diagrams I was drawing. In comparison, when nerves are compressed in the foramen (space between vertebrae where nerves exit), the nerve pain and dysfunction is very specific to that nerve and affects a specific body part.

5 weeks after surgery is still early, and my guess would be that your surgeon wants to know if any hardware or implants have been displaced and to check the spinal alignment so he/she knows if anything has physically changed since your surgery. You may be affected by inflammation form he surgery itself.

Would you share what you find out after your MRI?

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He did not do a Emg prior to surgery.this is mri from Monday.

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Guess I can’t do a picture. They said MRI results from Monday all looked good. Referred me to a neurologist. What I am seeing on the MRI result is potential impingement of nerve roots. Does this have anything to do with my balance and walking issues.

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@larryk1

Guess I can’t do a picture. They said MRI results from Monday all looked good. Referred me to a neurologist. What I am seeing on the MRI result is potential impingement of nerve roots. Does this have anything to do with my balance and walking issues.

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@larryk1 Balance can be affected by so many things like vision, hearing, inner ear problems, and blood pressure. That is something that a medical professional should evaluate. If we were only speaking about cervical spine related balance causes, one of them would be cervical spine alignment. Since you had recent spine surgery, I don't know what was addressed or if you have a normal spine alignment and curvature. Muscle spasms can move the vertebrae by twisting or tilting them. If C1 & C2 are twisted, it can cause vertigo because it can affect the blood supply to the brain because of arteries that run through the vertebra that get stretched because of the twist. There can be muscular headaches because of spine problems. Balance and walking can also be affected by cervical spinal cord compression. I had that happen with an uneven gait because of cord compression at C5/C6, and I had vertigo because of movement of C1 & C2 with muscle spasms. The nerve roots are very specific if they are compressed and affect a specific body part that is serviced by that nerve. The nerve roots for legs are in the lumbar spine, but if there is some impingement of the spinal cord upstream that is sending signals to the legs, it can be affected from higher up in the pathway.

A physical therapist can help a lot with evaluating balance issues. Can you share more specific information about which nerves you believe to be affected? Are you able to work with a physical therapist (with approval of your surgeon)?

Which nerve roots are potentially impinged on your MRI?

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Surgeon said physical therapy would not help,but I’m going to try it on my own.along with a chiropractor.latest mri reads Stable patchy T2 and STIR hyper intensity of the cord at level C6 and C7 likely secondary to myelomalacia or chronic spondylitis myelopathy. Potential impangement of the right C4 nerve route potential impingement of the C6 nerve roots potential impingement of the C7 nerve roots. Surgeon also said lumbar area with stenosis but that should not be affecting my balance or walking.

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@larryk1 Larry, may I ask what was the surgery you did have 5 weeks ago? What was your surgeon's advice based on the new MRI? I have to be honest with you here, so please understand that I say these things for your benefit and because I wish and hope for a successful recovery for you. Your surgeon should also explain the risks to you, so please direct any questions you have to them. Your choices are yours, but please make them from an informed position.

Did your surgeon explain what myelomalacia is from your report?

I realize he said physical therapy will not help. If you have damage to the spinal cord, you already have damage and dysfunction there, and perhaps that was what he was referring to. Physical therapy can help with maintaining proper spinal alignment by gently working on muscles that are pulling on the vertebrae, but it won't fix spinal cord or nerve damage.

I have to caution you…. Please listen to your surgeon and clear any treatment of your neck and spine with him. It can be dangerous to have someone manipulate your spine when you already have spine damage and trauma already. If you have Chronic Spondylitis as your report states, your discs are not strong enough to keep the vertebrae from sliding past each other and when that vertebra bone contacts your spinal cord, it can damage the cord. It all depends on how much pressure and for how long until the nerve axons in the spinal cord start to die and dissolve resulting in permanent damage and you loose whatever function was serviced by that path.

Your MRI report states that your spinal cord has changes suggestive of permanent damage. My physical therapist explained to me that if a person has instability with vertebrae slipping out of alignment up near the skull, it can be fatal for someone to manipulate that because of force to the spinal cord above the levels where signals are sent to your heart and lungs. If you take things into your own hands, you may cause damage that will make things much worse, and you will have to live with the consequences of the risks you take.

I understand your frustration and wanting to get better, but your surgery was very recent. It takes about 6 weeks for just the incision to heal. It would be very risky to try to do physical therapy on your own or to have a chiropractor working on you. I do not think it would be ethical for a chiropractor to agree to manipulate your spine right after surgery, and doing that may cause your spine surgeon to dismiss you as a patient. After that, you may not be able to find another spine surgeon willing to help you because they would fear a failure and wouldn't want to take a risk to their career from you. You have to be a good patient if you want doctors to want to help you.

Will you please call your surgeon and ask what you should be dong to increase your chances of a good recovery?

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I had 4 leval Acdf I had a phone conversation with the nurse practitioner about my recent MRI she referred me to neurologist, but I think I want to get a face to face with the surgeon about my recent MRI as I feel the phone conversation was not adequate.she said the myelomalacia was nothing to worry about.

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