Cervical & lower lumbar stenosis

Posted by toknee @toknee, Feb 5 5:32pm

Heading to the clinic soon for cervical & lumbar stenosis for a consult. Hoping for something less invasive besides surgery. I’m nervous! Anybody?

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@toknee Hello and welcome to Connect. Sometimes, doctors put off surgery for a while by doing epidural steroid injections. That doesn't fix stenosis, but it can perhaps buy some temporary relief when it reduces inflammation and that may relieve a little bit if pressure. It depends on how advanced the stenosis is, and how fast that is changing. There is a right time to decide on surgery, and that will be your decision. Prepare yourself to hear your surgeon say they recommend surgery because that can be a bit shocking when you hear that the first time. As patients, we all hope to avoid surgery, but sometimes, it really is the best option. Keep an open mind and write down some questions you may want to ask. I was scared too, and I worked through it and deprogrammed my fears. That is possible if you set your goals to overcome your fears.

Jenifer

REPLY
@jenniferhunter

@toknee Hello and welcome to Connect. Sometimes, doctors put off surgery for a while by doing epidural steroid injections. That doesn't fix stenosis, but it can perhaps buy some temporary relief when it reduces inflammation and that may relieve a little bit if pressure. It depends on how advanced the stenosis is, and how fast that is changing. There is a right time to decide on surgery, and that will be your decision. Prepare yourself to hear your surgeon say they recommend surgery because that can be a bit shocking when you hear that the first time. As patients, we all hope to avoid surgery, but sometimes, it really is the best option. Keep an open mind and write down some questions you may want to ask. I was scared too, and I worked through it and deprogrammed my fears. That is possible if you set your goals to overcome your fears.

Jenifer

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Good to read. I can't have any injections because I have Ckd 3. Plus I'm on blood thinners. I have spinal stenosis in 3 places in my back plus a mass on my L5 and S1. Joint in my lower back. You are a blessing to encourage others to be hopeful. I've lost my hopes. Knowing I can't have any surgery and I have to live in agonizing pain for the rest of my life. I'm 72 now. I can't hardly walk or stand very long because I have hip impingement in both hips and my knees are full of bone spurs. I pray every day for the Lord Jesus Christ will heal me . I have lost all quality of my life. Please pray for me. God said when two people pray he listens and intervene. That's what I need so bad.

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Injections help alot . I took have lumbar spinal stenosis plus in my neck and the middle of my back. I can't have any more injections because I'm on blood thinners. Plus diabetes. Good luck on your appointment. Let me know what the surgeon says. Prayers for you!!!

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@stwhittington

Good to read. I can't have any injections because I have Ckd 3. Plus I'm on blood thinners. I have spinal stenosis in 3 places in my back plus a mass on my L5 and S1. Joint in my lower back. You are a blessing to encourage others to be hopeful. I've lost my hopes. Knowing I can't have any surgery and I have to live in agonizing pain for the rest of my life. I'm 72 now. I can't hardly walk or stand very long because I have hip impingement in both hips and my knees are full of bone spurs. I pray every day for the Lord Jesus Christ will heal me . I have lost all quality of my life. Please pray for me. God said when two people pray he listens and intervene. That's what I need so bad.

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My orthopedic is saying I can’t have injections because my vertabraes are too close together

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@toknee

My orthopedic is saying I can’t have injections because my vertabraes are too close together

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Do hope your consult goes well. When procedures are not an option, then managing the pain is the priority.
Perhaps the doctor will suggest a combination of medications that will keep you comfortable.
All the best to you!

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@thisoldewe

Do hope your consult goes well. When procedures are not an option, then managing the pain is the priority.
Perhaps the doctor will suggest a combination of medications that will keep you comfortable.
All the best to you!

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Thank you❣️

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@jenniferhunter

@toknee Hello and welcome to Connect. Sometimes, doctors put off surgery for a while by doing epidural steroid injections. That doesn't fix stenosis, but it can perhaps buy some temporary relief when it reduces inflammation and that may relieve a little bit if pressure. It depends on how advanced the stenosis is, and how fast that is changing. There is a right time to decide on surgery, and that will be your decision. Prepare yourself to hear your surgeon say they recommend surgery because that can be a bit shocking when you hear that the first time. As patients, we all hope to avoid surgery, but sometimes, it really is the best option. Keep an open mind and write down some questions you may want to ask. I was scared too, and I worked through it and deprogrammed my fears. That is possible if you set your goals to overcome your fears.

Jenifer

Jump to this post

Hi It's Annie again. I am scheduled for a Laminotomy on March 1. I need help to deprogram my fears as you mentioned above. One friend of mine keeps telling me to try intensive myofascial release to avoid surgery, but at this point I am up all night with nerve pain most nights after walking or biking. I am very active, I could dial down my activity level, but I really want to do the things I love without such horrible pain.
I'll take any advice I can get on deprogramming fears.
Also I read that many people still have nerve pain for months after surgery if it has been present for a long time, which mine has. Any info would be great.

thanks,
Annie

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@annie1

Hi It's Annie again. I am scheduled for a Laminotomy on March 1. I need help to deprogram my fears as you mentioned above. One friend of mine keeps telling me to try intensive myofascial release to avoid surgery, but at this point I am up all night with nerve pain most nights after walking or biking. I am very active, I could dial down my activity level, but I really want to do the things I love without such horrible pain.
I'll take any advice I can get on deprogramming fears.
Also I read that many people still have nerve pain for months after surgery if it has been present for a long time, which mine has. Any info would be great.

thanks,
Annie

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@annie1 You've got about 3 weeks which isn't a lot of time, but here are some thoughts. Think back in your life to events that caused fear as you were growing up so you can figure out where your fear comes from. None of us are born with fear, and it is something we learn along the way as we try to remain safe. You might find some similarities in a pattern you can recognize. Surgery brings up the unknown, and you may not have a frame of reference to accept and embrace it as a positive change, just yet. Were there experiences with other medical providers that caused anxiety, and afterward, you thought, well that wasn't so bad and I did OK? Give yourself credit for every small victory you've had over fears no matter how small.

These are patterns we learn in early life, and we react with fear just because something feels a bit similar. Your brain takes a shortcut by recognizing this pattern it has learned, and jumps right to the response in an attempt to get you out of perceived danger sooner. Ask yourself how much more you know now than when you were a kid and how does having the control of choices now in making decisions about your care change this completely? I realized that I was still thinking like a 6 year old when it came to having to face something that was going to cause pain and I told myself it was time to think like an adult. Stress increases the amount of pain you feel a lot. There are also people who can use their mind to not feel pain when we know what they are doing would cause pain. This means that pain does NOT always have total control of the situation. I also know that if someone else feels pain, I can feel it too. For example, when I give my husband an allergy shot, if he reacts, I can feel the pain of the needle in myself and I know my brain is supplying the feeling of pain because it is what I expect, but there wasn't a physical reason for it.

I often listened to music I loved and was doing deep slow relaxed breathing in time to the music. I measured my blood pressure before and after and I was able to drop it by 15 points. Anytime, I felt anxiety, I would turn to this tactic to control the anxiety because I knew that I could do this. Then I started pairing an mage with the music and breathing. I had always been afraid of any medical provider who would do something to me that was painful, and I didn't want to have that reaction to a surgeon who I knew would help me. I started using a photo of the surgeon during this exercise so I could be familiar with his face and think of him in a positive way.

I wanted to focus more on the positive aspect of surgery than fear the pain caused by surgery. I knew the pain after surgery would be healing pain that would come because I was in control of the decision to have surgery, and this makes a difference because before pain had always been something I wanted to run from, and now I had a choice and could trade that fear of the unknown for healing pain. I had also had a very painful experience during an epidural spinal injection that was done as a diagnostic test. It was so painful, I was convulsing in pain. This was much more extreme than what I thought extreme pain was. I was well on my way to passing out, and I started my deep breathing, and I played my favorite music in my head and visualized an eagle flying free in the sky and high above this office, and I imagined I was that eagle. I did pull myself back from passing out, and even though I was in this extreme pain, I learned that I could handle it. I now had a new frame of reference to compare to other things because I now had in my tool box my new skill in relaxation therapy.

The first time I had surgery was for carpal tunnel, and I was scared and didn't know how to handle it. What I did was to see a psychologist who did clinical hypnosis. That really worked. I was able to go through the surgery and stay calm even though I could feel the butterflies in my stomach. If you don't have enough time to work through deprogramming your fears, clinical hypnosis would be a good option.

There are lots of Ted Talks about facing fear, and I watched as many as I could find. I also learned everything I could about spine surgery and procedures because for me, understanding the medical side of it took away the unknown. For some people, that might induce anxiety, but I had studied science in college and earned a biology degree, so I could understand medical literature. It was actually in reading medical literature, that I found a case like mine and figured out what a bunch of surgeons had missed in my diagnosis. In that way, I redirected my journey into getting help instead of a wild goose chase. I was loosing the ability to control my arms, and because I trained many years to become an artist, I didn't want to loose that ability. I eventually found the right surgeon who gave me back what I was loosing and that is a very good thing.

What do you think could be helpful in facing or moderating your fear? How can you make friends with your fear and understand it?

Jennifer

REPLY
@jenniferhunter

@annie1 You've got about 3 weeks which isn't a lot of time, but here are some thoughts. Think back in your life to events that caused fear as you were growing up so you can figure out where your fear comes from. None of us are born with fear, and it is something we learn along the way as we try to remain safe. You might find some similarities in a pattern you can recognize. Surgery brings up the unknown, and you may not have a frame of reference to accept and embrace it as a positive change, just yet. Were there experiences with other medical providers that caused anxiety, and afterward, you thought, well that wasn't so bad and I did OK? Give yourself credit for every small victory you've had over fears no matter how small.

These are patterns we learn in early life, and we react with fear just because something feels a bit similar. Your brain takes a shortcut by recognizing this pattern it has learned, and jumps right to the response in an attempt to get you out of perceived danger sooner. Ask yourself how much more you know now than when you were a kid and how does having the control of choices now in making decisions about your care change this completely? I realized that I was still thinking like a 6 year old when it came to having to face something that was going to cause pain and I told myself it was time to think like an adult. Stress increases the amount of pain you feel a lot. There are also people who can use their mind to not feel pain when we know what they are doing would cause pain. This means that pain does NOT always have total control of the situation. I also know that if someone else feels pain, I can feel it too. For example, when I give my husband an allergy shot, if he reacts, I can feel the pain of the needle in myself and I know my brain is supplying the feeling of pain because it is what I expect, but there wasn't a physical reason for it.

I often listened to music I loved and was doing deep slow relaxed breathing in time to the music. I measured my blood pressure before and after and I was able to drop it by 15 points. Anytime, I felt anxiety, I would turn to this tactic to control the anxiety because I knew that I could do this. Then I started pairing an mage with the music and breathing. I had always been afraid of any medical provider who would do something to me that was painful, and I didn't want to have that reaction to a surgeon who I knew would help me. I started using a photo of the surgeon during this exercise so I could be familiar with his face and think of him in a positive way.

I wanted to focus more on the positive aspect of surgery than fear the pain caused by surgery. I knew the pain after surgery would be healing pain that would come because I was in control of the decision to have surgery, and this makes a difference because before pain had always been something I wanted to run from, and now I had a choice and could trade that fear of the unknown for healing pain. I had also had a very painful experience during an epidural spinal injection that was done as a diagnostic test. It was so painful, I was convulsing in pain. This was much more extreme than what I thought extreme pain was. I was well on my way to passing out, and I started my deep breathing, and I played my favorite music in my head and visualized an eagle flying free in the sky and high above this office, and I imagined I was that eagle. I did pull myself back from passing out, and even though I was in this extreme pain, I learned that I could handle it. I now had a new frame of reference to compare to other things because I now had in my tool box my new skill in relaxation therapy.

The first time I had surgery was for carpal tunnel, and I was scared and didn't know how to handle it. What I did was to see a psychologist who did clinical hypnosis. That really worked. I was able to go through the surgery and stay calm even though I could feel the butterflies in my stomach. If you don't have enough time to work through deprogramming your fears, clinical hypnosis would be a good option.

There are lots of Ted Talks about facing fear, and I watched as many as I could find. I also learned everything I could about spine surgery and procedures because for me, understanding the medical side of it took away the unknown. For some people, that might induce anxiety, but I had studied science in college and earned a biology degree, so I could understand medical literature. It was actually in reading medical literature, that I found a case like mine and figured out what a bunch of surgeons had missed in my diagnosis. In that way, I redirected my journey into getting help instead of a wild goose chase. I was loosing the ability to control my arms, and because I trained many years to become an artist, I didn't want to loose that ability. I eventually found the right surgeon who gave me back what I was loosing and that is a very good thing.

What do you think could be helpful in facing or moderating your fear? How can you make friends with your fear and understand it?

Jennifer

Jump to this post

Thanks so much. These are great ideas. I can listen to calming music and breath deeply. I have another bothersome conflict also I want to run by you. I am seeing another highly rated surgeon on Tues who didn't want to do surgery on me years ago due to my Osteoporosis, but now I have an appointment with him since my DEXA increased. I am very far down the road with the other surgeon as you know. What if I change my mind ?
I want to say that I am very put off by having to basically only communicate with the Surgeon's Physician Assistant now, he is not accessible it seems anymore. I know I would feel calmer if I could see him again in person, but the assistant is saying that isn't possible. What do you think about that ? This is at Columbia University, Medical Center/Columbia Presbyterian that has a very good reputation.

REPLY
@stwhittington

Good to read. I can't have any injections because I have Ckd 3. Plus I'm on blood thinners. I have spinal stenosis in 3 places in my back plus a mass on my L5 and S1. Joint in my lower back. You are a blessing to encourage others to be hopeful. I've lost my hopes. Knowing I can't have any surgery and I have to live in agonizing pain for the rest of my life. I'm 72 now. I can't hardly walk or stand very long because I have hip impingement in both hips and my knees are full of bone spurs. I pray every day for the Lord Jesus Christ will heal me . I have lost all quality of my life. Please pray for me. God said when two people pray he listens and intervene. That's what I need so bad.

Jump to this post

@stwhittington Thank you for your kind words. I appreciate them. I know that for a lot of people, spine surgery is scary territory and there are a lot of factors that can affect the success of spine surgery. It was a tough journey for me mentally, even though my surgery wasn't a big extensive spine surgery. That is why I try to help because it can be hard to wrap your head around a spine problem. Even spine surgeons miss things and symptoms can be tricky.

For some people, spine surgery leaves them in more pain or doesn't solve the pain they had before surgery. It's hard to know sometimes what to do, and what would be the best choice. Doctors try to solve functional problems rather than promise to cure pain.

Have your doctors tried any physical therapy for you? Sometimes that can help pain or weakness issues and it doesn't involve injections or drugs. Sometimes water therapy pools can help by supporting body weight for walking in a pool. I used to help a lady who had MS, and she said that helped her a lot. I have had a lot of benefit from myofascial release that my physical therapist does. That relieves the overly tight fascial tissue that develops from injuries or habits. Fascial restrictions can prevent proper movement and body mechanics. Sometimes that helps relieve pain. It can't fix spinal stenosis, but it can help a lot of issues.

You may be interested in looking at the discussion we have for MFR therapy.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I also wanted to share with you a story about a nurse at Mayo who uses her piano music to help patients at Mayo and she prays for them. We have become friends through my visits to Mayo as a patient. -She is known as the piano nurse and most of what she plays are hymns. I have enjoyed sitting in the lobby while she plays the piano at Mayo. She was a help to me and I have been able to help her too. I thought you may enjoy her story.
https://www.kare11.com/article/news/local/land-of-10000-stories/concert-pianist-inspired-to-become-nurse-now-mesmerizes-patients-with-her-music-mayo-clinic/89-95b6d64d-598a-4bb7-9ef6-179c13a5901f

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