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Spinal disease

Posted by akc @akc, Jan 4, 2022

Is there anyone else on this platform who has been diagnosed with cervical stenosis, myelopathy and radiculopathy? Basically what I have been told is I have CSM with spinal cord damage and I am trying to walk as long as I can. I was diagnosed on December 10th 2020, no surgery yet.

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 4, 2022

Hello Akc, Yes, I had cervical stenosis with mild myelopathy and spinal cord compression. I didn't have radiculopathy which is compression of the nerve roots, but I did experience some of that by side bending when my collapsed C5/C6 disc was still in place. It had collapsed about 50%, and when I bent sideways, it did alarm the nerves to my arms, so I can imagine what it might be like to live with that all the time. I had ACDF (spinal fusion) surgery 5 years ago and it made a huge difference. I am pain free today. It was a couple years before I could find a surgeon to help me, and I finally found him at Mayo. I would have done surgery much sooner, but local surgeons didn't understand my case and didn't want to operate. Spinal cord compression in the neck can affect the ability to walk. I had intermittent issues with an uneven gait because of the degree of spinal cord compression that I had.

I know this can be challenging to live with when you wonder if things will always be this way. If you have been told you have spinal cord damage, it surprises me that you have not been offered surgery to decompress the spinal cord. You have already waited a year since the diagnosis. Would you consider getting another opinion at a well respected medical center?

REPLY
1 reply
akc | @akc | Jan 21 8:30pm
In reply to @jenniferhunter "Hello Akc, Yes, I had cervical stenosis with mild myelopathy and spinal cord compression. I didn't..." + (show)
@jenniferhunter

Hello Akc, Yes, I had cervical stenosis with mild myelopathy and spinal cord compression. I didn't have radiculopathy which is compression of the nerve roots, but I did experience some of that by side bending when my collapsed C5/C6 disc was still in place. It had collapsed about 50%, and when I bent sideways, it did alarm the nerves to my arms, so I can imagine what it might be like to live with that all the time. I had ACDF (spinal fusion) surgery 5 years ago and it made a huge difference. I am pain free today. It was a couple years before I could find a surgeon to help me, and I finally found him at Mayo. I would have done surgery much sooner, but local surgeons didn't understand my case and didn't want to operate. Spinal cord compression in the neck can affect the ability to walk. I had intermittent issues with an uneven gait because of the degree of spinal cord compression that I had.

I know this can be challenging to live with when you wonder if things will always be this way. If you have been told you have spinal cord damage, it surprises me that you have not been offered surgery to decompress the spinal cord. You have already waited a year since the diagnosis. Would you consider getting another opinion at a well respected medical center?

Jump to this post

I did get a second opinion about surgery and both surgeons wanted to do spinal fusion and I rejected because that's not the type of surgery I was searching out. I have been dealing with some pretty serious symptoms since 2019 but I'm hanging in there and I'm not doing too terrible except for now I might find out that I have congestive heart failure.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 22 2:46pm
In reply to @akc "I did get a second opinion about surgery and both surgeons wanted to do spinal fusion..." + (show)
@akc

I did get a second opinion about surgery and both surgeons wanted to do spinal fusion and I rejected because that's not the type of surgery I was searching out. I have been dealing with some pretty serious symptoms since 2019 but I'm hanging in there and I'm not doing too terrible except for now I might find out that I have congestive heart failure.

Jump to this post

@akc I'm curious, why are you opposed to spinal fusion? It may depend on the number of levels involved; is it a cervical or lumbar issue? There are artificial discs, but there are limits to where they can be used and they have their own risks too. What is is you are looking for from a surgeon?

Have your surgeons indicated that your heart condition may prohibit spine surgery or make it riskier? That is something to think about and you may not be a good candidate for surgery in the future.

REPLY
1 reply
akc | @akc | Jan 22 3:00pm
In reply to @jenniferhunter "@akc I'm curious, why are you opposed to spinal fusion? It may depend on the number..." + (show)
@jenniferhunter

@akc I'm curious, why are you opposed to spinal fusion? It may depend on the number of levels involved; is it a cervical or lumbar issue? There are artificial discs, but there are limits to where they can be used and they have their own risks too. What is is you are looking for from a surgeon?

Have your surgeons indicated that your heart condition may prohibit spine surgery or make it riskier? That is something to think about and you may not be a good candidate for surgery in the future.

Jump to this post

I didn't even know until last week that I have an enlarged heart. I am morbidly obese and they really don't want to perform surgery of any kind on me but I wanted them to just clean things up in my neck. I don't want any metal in my neck and there's no room to replace discs. I'm more into natural cures. I really don't trust the way Drs practice medicine today. I rely on my faith. Not interested in surgery of any kind.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Jan 22 3:21pm
In reply to @akc "I didn't even know until last week that I have an enlarged heart. I am morbidly..." + (show)
@akc

I didn't even know until last week that I have an enlarged heart. I am morbidly obese and they really don't want to perform surgery of any kind on me but I wanted them to just clean things up in my neck. I don't want any metal in my neck and there's no room to replace discs. I'm more into natural cures. I really don't trust the way Drs practice medicine today. I rely on my faith. Not interested in surgery of any kind.

Jump to this post

@akc There are spine surgeons who can do a single level fusion without using metal implants. My surgeon at Mayo did that for me. I had a fusion at C5/C6 with only a bone disk implant and I stayed in a neck brace until I was fused which was 3 months. There was no hardware. I understand not wanting to have surgery. It is a big step and to take the risk for surgery, there needs to be a good reason in what the benefit would be that you might expect. It sounds like your doctors think the risks are too great for you.

Here are a few heart related discussions that may be of interest.

Heart and Blood Health - "Enlarged Heart"
https://connect.mayoclinic.org/discussion/enlarged-heart-1/
Heart and Blood Health - "Heart Failure and Enlarged Heart"
https://connect.mayoclinic.org/discussion/heart-failure-and-enlarged-heart/

REPLY
1 reply
akc | @akc | Jan 22 4:09pm
In reply to @jenniferhunter "@akc There are spine surgeons who can do a single level fusion without using metal implants...." + (show)
@jenniferhunter

@akc There are spine surgeons who can do a single level fusion without using metal implants. My surgeon at Mayo did that for me. I had a fusion at C5/C6 with only a bone disk implant and I stayed in a neck brace until I was fused which was 3 months. There was no hardware. I understand not wanting to have surgery. It is a big step and to take the risk for surgery, there needs to be a good reason in what the benefit would be that you might expect. It sounds like your doctors think the risks are too great for you.

Here are a few heart related discussions that may be of interest.

Heart and Blood Health - "Enlarged Heart"
https://connect.mayoclinic.org/discussion/enlarged-heart-1/
Heart and Blood Health - "Heart Failure and Enlarged Heart"
https://connect.mayoclinic.org/discussion/heart-failure-and-enlarged-heart/

Jump to this post

My whole cervical spine is messed up actually and the surgeon I met with really did not give me any hope. He told me he could not make me better. He could only stop the progression of my disease. I went to him for him to make me better so I can get my life back because I have to walk with a walker but they could not guarantee me any improvement and I have nobody to take care of me after major surgery. I live alone. I had to take a lot of things into consideration when I made that decision. The neurologist told me that my decision should be based on the prognosis when it comes to surgery. And now I could be in end stage congestive heart failure so it really would not have changed my destiny I guess. I think the gabapentin that I have been on for years now probably has given me CHF. I have to do an echocardiogram tomorrow to get a diagnosis of my heart condition. I'm only 58 years old and I do not want to die this young so right now I'm trying to focus on my diet and taking this weight off with the hope that it will give me more life. I have so much going on with my health right now it's not even funny. I have had to endure one thing after another over the last 8 years so now having CSM doesn't seem so major anymore.

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