Spine conditions: Told I would not walk without surgery

Posted by annie1 @annie1, Jan 8 9:58am

I have severe lumbar stenosis and Spondylolisthesis as well as a bulging disc. My main symptoms are throbbing in my calf muscles. I was told by a pain management Dr that he thought if I didn't have surgery I would not be able to walk in a few years ! it would be fusion. I would like people's feedback. I don't have pain in my Back, all in my legs.

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@annie1

I don't think it's that sudden. So what did recommend? I was told that I might not be able to walk if I didn't have surgery. But he didn't say it would be so sudden like that. I am going to have the surgery anyway not necessarily because of that but because I can't live with this type of nerve pain anymore and I used to be very social but now I can't go to things where people stand around and chat like a little art opening or any kind of party where the people are standing. None of the pain management doctors I've been to have really helped me, which is another reason I'm going to have to have the surgery. I sure hope that works otherwise I don't know what I'm going to do.

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This is exactly what I was told could happen too! It is very scary. It is like having a sentence hanging over your head.

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@ljm047

This is exactly what I was told could happen too! It is very scary. It is like having a sentence hanging over your head.

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So what are you doing ? I guess I am resigning myself to surgery, the least difficult one, Laminotomy. Let me know what you are doing and we can help each other.

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I am only just trying to get my head around it all. My surgeon said he would need to put surgical screws in to stabilise spine. I have severe spinal stenosis L4/5 and lateral recess stenosis L5/S1. He also said there is no urgency at this stage as I have no weakness and no true cauda equina symptoms.
I am seeing a physio to try to help with pain. No success as yet.
I am a fit 76 year old, very flexible for my age living in Western Australia.
Good to hear from you. I am new to using Mayoclinic connect.
Cheers Lyn

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@ljm047

This is exactly what I was told could happen too! It is very scary. It is like having a sentence hanging over your head.

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@ljm047 Hello, and welcome to Connect. I know it is scary to have a spine condition. I was there too, and I am a cervical spine surgery patient.

I prefer to think about it as a choice. You can choose to have surgery that can benefit you. Sometimes these problems just find us, and we have to do our best to deal with them. My spine condition came years after an injury from a traffic accident. It took me awhile to get my head into embracing the surgery that could make me better, and in doing that, I learned how to face my fears and defeat them.

Unfortunately, when you get a recommendation for surgery from a surgeon, they don't have time to help you through the emotional part of receiving that news and it usually comes as quite a shock. I remember that feeling too, and the first time I heard this, unfortunately it was from a very pushy surgeon who triggered a lot of anxiety for me. That pushiness increased my fears, and I wonder if I would have taken that news better if it had come first from a compassionate surgeon instead. Eventually, I found that compassionate surgeon at Mayo, and when he offered me surgery, I felt validated, and emotionally, I was ready for surgery before I walked into his office.

I'm glad you and @annie1 have connected. She and I had been discussing facing fear, and you may appreciate that discussion. She asked for some of my suggestions, and you may be interested. Here is the link https://connect.mayoclinic.org/comment/1011580/

Jennifer

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@jenniferhunter

@ljm047 Hello, and welcome to Connect. I know it is scary to have a spine condition. I was there too, and I am a cervical spine surgery patient.

I prefer to think about it as a choice. You can choose to have surgery that can benefit you. Sometimes these problems just find us, and we have to do our best to deal with them. My spine condition came years after an injury from a traffic accident. It took me awhile to get my head into embracing the surgery that could make me better, and in doing that, I learned how to face my fears and defeat them.

Unfortunately, when you get a recommendation for surgery from a surgeon, they don't have time to help you through the emotional part of receiving that news and it usually comes as quite a shock. I remember that feeling too, and the first time I heard this, unfortunately it was from a very pushy surgeon who triggered a lot of anxiety for me. That pushiness increased my fears, and I wonder if I would have taken that news better if it had come first from a compassionate surgeon instead. Eventually, I found that compassionate surgeon at Mayo, and when he offered me surgery, I felt validated, and emotionally, I was ready for surgery before I walked into his office.

I'm glad you and @annie1 have connected. She and I had been discussing facing fear, and you may appreciate that discussion. She asked for some of my suggestions, and you may be interested. Here is the link https://connect.mayoclinic.org/comment/1011580/

Jennifer

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Thank you. I am trying to get all the knowledge I can and realise I didn’t ask the right questions from the surgeon when I saw him last.
You are right it is a big decision. My Physio is a great help and has suggested I get a second opinion.
It’s the thought of being worse off than I am now.
I don’t have any bad medical experiences and in the past have only had minor surgeries.
Lyn

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@jenniferhunter

@ljm047 Hello, and welcome to Connect. I know it is scary to have a spine condition. I was there too, and I am a cervical spine surgery patient.

I prefer to think about it as a choice. You can choose to have surgery that can benefit you. Sometimes these problems just find us, and we have to do our best to deal with them. My spine condition came years after an injury from a traffic accident. It took me awhile to get my head into embracing the surgery that could make me better, and in doing that, I learned how to face my fears and defeat them.

Unfortunately, when you get a recommendation for surgery from a surgeon, they don't have time to help you through the emotional part of receiving that news and it usually comes as quite a shock. I remember that feeling too, and the first time I heard this, unfortunately it was from a very pushy surgeon who triggered a lot of anxiety for me. That pushiness increased my fears, and I wonder if I would have taken that news better if it had come first from a compassionate surgeon instead. Eventually, I found that compassionate surgeon at Mayo, and when he offered me surgery, I felt validated, and emotionally, I was ready for surgery before I walked into his office.

I'm glad you and @annie1 have connected. She and I had been discussing facing fear, and you may appreciate that discussion. She asked for some of my suggestions, and you may be interested. Here is the link https://connect.mayoclinic.org/comment/1011580/

Jennifer

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How do I get an appointment at Mayo ?

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@annie1

How do I get an appointment at Mayo ?

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@annie1 The first thing would be to check if Mayo takes your insurance because you can't get an appointment without it. Spine surgery is so expensive that it is out of reach for most people if you had to pay out of pocket. You can call Mayo's billing department to confirm insurance, but that is only open M-F during business hours.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Are you unsure you want to continue with your current surgeon? Do you have new information that changes your decision? Are you looking for a different option for surgery? Is there anything about procedures you want to discuss?

There is also a wait to get into Mayo after you send in imaging and records for review. They do take cases based on urgency, and that is decided by doctors there. There are some other hospitals in the Mayo Clinic Health System that are not the main Mayo Clinic, but are local hospitals in Minnesota and Wisconsin. Sometimes, you can get an appointment at one of those sooner (if they have a specialist you need and some are Mayo trained) than the main Mayo campus in Rochester if your insurance is accepted. Here is their website: https://www.mayoclinichealthsystem.org/

If you do want to apply to Mayo Clinic (any campus), you can use this link to contact them, and you will be called back by someone who will help you submit records and imaging. It is an online form where you fill out your information. This is how I contacted Mayo when I became a patient. http://mayocl.in/1mtmR63

Jennifer

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@mthompson1947

I have spinal stenosis my pain management Dr told me I could wake up one day not be able to walk.

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@mthompson1947 I just wanted to say hello and welcome you to Connect. Are you considering surgery for your spinal stenosis?

Jennifer

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@ljm047

I am only just trying to get my head around it all. My surgeon said he would need to put surgical screws in to stabilise spine. I have severe spinal stenosis L4/5 and lateral recess stenosis L5/S1. He also said there is no urgency at this stage as I have no weakness and no true cauda equina symptoms.
I am seeing a physio to try to help with pain. No success as yet.
I am a fit 76 year old, very flexible for my age living in Western Australia.
Good to hear from you. I am new to using Mayoclinic connect.
Cheers Lyn

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Hi, I'm 75. I had the same thing and had the surgery 15 years on the first one ago and 6 years ago on the second one and after that I had one on 10/29/23 that was scoliosis surgery from T2 to S1, it wasn't easy I was in the hospital for 10 days 2 of them in ICU with 4 pt. of blood and on the operating table for 14 hours. My doctor was a specialty spine neurosurgeon in Houston, Texas. After getting out of the hospital I have been in rehab ever since and will be through May. I had to learn how to walk again and set differently because I also had screws put in my pelvis to help hold the hardware up so now, I must bend from hips and not waist I have had to do a lot of things differently. Now I'm doing so much better, not in pain. My problem was caused by degenerative disc disease. My mother and sister have it too, my mother had no surgeries and suffered so much and ended up in a wheelchair I watched her go through all this and didn't want that for myself. I hope I have helped you. I know that every person must decide for themselves what's is best for them whatever you decide I wish you the best and God bless you, lady

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@me75

Hi, I'm 75. I had the same thing and had the surgery 15 years on the first one ago and 6 years ago on the second one and after that I had one on 10/29/23 that was scoliosis surgery from T2 to S1, it wasn't easy I was in the hospital for 10 days 2 of them in ICU with 4 pt. of blood and on the operating table for 14 hours. My doctor was a specialty spine neurosurgeon in Houston, Texas. After getting out of the hospital I have been in rehab ever since and will be through May. I had to learn how to walk again and set differently because I also had screws put in my pelvis to help hold the hardware up so now, I must bend from hips and not waist I have had to do a lot of things differently. Now I'm doing so much better, not in pain. My problem was caused by degenerative disc disease. My mother and sister have it too, my mother had no surgeries and suffered so much and ended up in a wheelchair I watched her go through all this and didn't want that for myself. I hope I have helped you. I know that every person must decide for themselves what's is best for them whatever you decide I wish you the best and God bless you, lady

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@me75 I'm glad to hear that you are doing well and surgery improved your life. I also have parents in wheelchairs and knew I didn't want that either. It is hard to be disabled.

Jennifer

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