Spine conditions: Told I would not walk without surgery

@annie1 Hi Annie. I think bias is created by the anticipated profit for the surgeon for doing surgery. Most surgeons are independent contractors in hospital systems which is why there are separate bills from the surgeon and hospital. Some surgeons open their own surgery centers or a group doctor owned facility, and that would create a bias toward profits to pay the operating costs and for the doctors themselves. Mayo is different in that they are a non profit medical foundation and everyone who works there is an employee. Surgeons do not get bonuses for doing surgery; their pay is the same if they do it or not, so that removes the bias for personal profit. If a surgeon is pushy about wanting to do surgery, I wouldn't go back. I saw a pushy surgeon who was in their private practice center co-owned by 11 surgeons. I got quality of life surveys in e mails from him for 2 years sniffing for business. By that time, my surgery had already been done at Mayo.

There are many doctor produced videos out there marketing services for surgeons. There are also videos from spine surgery conferences where surgeons are presenting cases to each other, and these usually are unbiased and sometimes honest about the outcome being positive or what could have been better for the patient with a different procedure. Surgeons do tend to speak honestly to other surgeons there and surgeons presenting there tend to be leaders in their field from teaching hospitals and respected medical centers.

Many people have bulging discs. That is different than a herniation where the fibrous outer layer of the disc cracks open and the jelly like nucleus can squish out. When that happens, the disc can loose height, and the extruded material causes inflammation and can cause bone spur growth. Bone spurs and bone remodeling happen because of uneven pressure. I know in my case, my ruptured disc was half the height it was supposed to be and that put pressure on the facet joints which caused some arthritis there. I also had a bulging disc in my thoracic spine and in working with a physical therapist, that straitened itself out and no longer is shown as bulging on imaging, but it was probably minor. I do have a bulging lumbar disc and that level cracks on rotation, but it isn't causing any issues.

You have to weigh your symptoms. Is it something you can live with? If you track your progress and keep written notes, you'll know if you are getting better or worse. I was doing this on body diagrams and drawing maps and defining what kind of pain, time of day, and what body position was associated with it. That is how I knew how fast my condition was changing, and I also saw the amount of bone spurs double around the ruptured cervical disc in 9 months time on MRI imaging as my symptoms were getting worse. I had spinal cord compression and my arms were so weak, I had trouble pushing a shopping cart or driving a car, and then after the exertion, I would have to take a nap because it was physically exhausting.

If you are loosing functions like coordination, bowel or bladder control, having mobility problems or have muscle atrophy caused by nerve compression, that is more serious. That is when you compere the risk of surgery and pain it causes against the benefits you can get from surgery. When you decide on surgery, there are many more things to consider about which procedure or solution is best, etc? Take your time with major decisions like this and getting many opinions is a good idea before making a decision. If you want to get an opinion from Mayo, you'll need to know if your insurance is accepted there, so a call to the billing department is a good idea. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

I can suggest a book that I read called "Back in Control". It was written by a spine surgeon who became a spine surgery patient himself, and he is of the opinion that there are too many unnecessary back surgeries. I found that because he gave a presentation at a spine conference that I found online, so I looked it up and bought his book.
https://backincontrol.com/

One thing to also realize is that contemplating spine surgery is scary stuff for most people, and that fear and anxiety will increase pain levels a lot. If you haven't been through spine surgery before, you don't know what to expect. This is something I had to come to terms with and I learned how to talk myself out of allowing fear and pain to run away with me, and I was able to look at my situation objectively rather than emotionally. I was working with a PT who also doing myofascial release and she kept realigning my spine into the best alignment and doing electric stimulation on the nerve roots to block pain signals, and that helped for about a week. That was before my spine surgery when I was having trouble finding a surgeon to help me, and she was able to buy some time this way. Some patients do spine injections to put off surgery. I had one, but had a bad reaction to it, so I wouldn't do any more of them.

I asked my surgeon what I could do to help me avoid needing his services again. He told me to maintain my core strength to support the spine. I'm glad to know he'll be there for me if I need him.

Working with a physical therapist is a good idea. They can work on core strength and strength for good posture which helps take pressure off your back. They also are a good sounding board to ask questions because they rehab patents after surgery, and they kind of have a sense of who's who among surgeons and tend know the good ones if they have seen their patents after a procedure.

What are the symptoms that you have now? Have the symptoms worsened over time?

Jennifer

Just wondering, how you know that Mayo is not for profit ? I didn't think any hospital in the US was not for profit. I don't have loss of bladder or bowel control luckily, but my other symptoms seem to be getting worse, the throbbing and cramping.

@annie1 Hi Annie. I think bias is created by the anticipated profit for the surgeon for doing surgery. Most surgeons are independent contractors in hospital systems which is why there are separate bills from the surgeon and hospital. Some surgeons open their own surgery centers or a group doctor owned facility, and that would create a bias toward profits to pay the operating costs and for the doctors themselves. Mayo is different in that they are a non profit medical foundation and everyone who works there is an employee. Surgeons do not get bonuses for doing surgery; their pay is the same if they do it or not, so that removes the bias for personal profit. If a surgeon is pushy about wanting to do surgery, I wouldn't go back. I saw a pushy surgeon who was in their private practice center co-owned by 11 surgeons. I got quality of life surveys in e mails from him for 2 years sniffing for business. By that time, my surgery had already been done at Mayo.

There are many doctor produced videos out there marketing services for surgeons. There are also videos from spine surgery conferences where surgeons are presenting cases to each other, and these usually are unbiased and sometimes honest about the outcome being positive or what could have been better for the patient with a different procedure. Surgeons do tend to speak honestly to other surgeons there and surgeons presenting there tend to be leaders in their field from teaching hospitals and respected medical centers.

Many people have bulging discs. That is different than a herniation where the fibrous outer layer of the disc cracks open and the jelly like nucleus can squish out. When that happens, the disc can loose height, and the extruded material causes inflammation and can cause bone spur growth. Bone spurs and bone remodeling happen because of uneven pressure. I know in my case, my ruptured disc was half the height it was supposed to be and that put pressure on the facet joints which caused some arthritis there. I also had a bulging disc in my thoracic spine and in working with a physical therapist, that straitened itself out and no longer is shown as bulging on imaging, but it was probably minor. I do have a bulging lumbar disc and that level cracks on rotation, but it isn't causing any issues.

You have to weigh your symptoms. Is it something you can live with? If you track your progress and keep written notes, you'll know if you are getting better or worse. I was doing this on body diagrams and drawing maps and defining what kind of pain, time of day, and what body position was associated with it. That is how I knew how fast my condition was changing, and I also saw the amount of bone spurs double around the ruptured cervical disc in 9 months time on MRI imaging as my symptoms were getting worse. I had spinal cord compression and my arms were so weak, I had trouble pushing a shopping cart or driving a car, and then after the exertion, I would have to take a nap because it was physically exhausting.

If you are loosing functions like coordination, bowel or bladder control, having mobility problems or have muscle atrophy caused by nerve compression, that is more serious. That is when you compere the risk of surgery and pain it causes against the benefits you can get from surgery. When you decide on surgery, there are many more things to consider about which procedure or solution is best, etc? Take your time with major decisions like this and getting many opinions is a good idea before making a decision. If you want to get an opinion from Mayo, you'll need to know if your insurance is accepted there, so a call to the billing department is a good idea. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

I can suggest a book that I read called "Back in Control". It was written by a spine surgeon who became a spine surgery patient himself, and he is of the opinion that there are too many unnecessary back surgeries. I found that because he gave a presentation at a spine conference that I found online, so I looked it up and bought his book.
https://backincontrol.com/

One thing to also realize is that contemplating spine surgery is scary stuff for most people, and that fear and anxiety will increase pain levels a lot. If you haven't been through spine surgery before, you don't know what to expect. This is something I had to come to terms with and I learned how to talk myself out of allowing fear and pain to run away with me, and I was able to look at my situation objectively rather than emotionally. I was working with a PT who also doing myofascial release and she kept realigning my spine into the best alignment and doing electric stimulation on the nerve roots to block pain signals, and that helped for about a week. That was before my spine surgery when I was having trouble finding a surgeon to help me, and she was able to buy some time this way. Some patients do spine injections to put off surgery. I had one, but had a bad reaction to it, so I wouldn't do any more of them.

I asked my surgeon what I could do to help me avoid needing his services again. He told me to maintain my core strength to support the spine. I'm glad to know he'll be there for me if I need him.

Working with a physical therapist is a good idea. They can work on core strength and strength for good posture which helps take pressure off your back. They also are a good sounding board to ask questions because they rehab patents after surgery, and they kind of have a sense of who's who among surgeons and tend know the good ones if they have seen their patents after a procedure.

What are the symptoms that you have now? Have the symptoms worsened over time?

Jennifer

@annie1 Hi Annie. I think bias is created by the anticipated profit for the surgeon for doing surgery. Most surgeons are independent contractors in hospital systems which is why there are separate bills from the surgeon and hospital. Some surgeons open their own surgery centers or a group doctor owned facility, and that would create a bias toward profits to pay the operating costs and for the doctors themselves. Mayo is different in that they are a non profit medical foundation and everyone who works there is an employee. Surgeons do not get bonuses for doing surgery; their pay is the same if they do it or not, so that removes the bias for personal profit. If a surgeon is pushy about wanting to do surgery, I wouldn't go back. I saw a pushy surgeon who was in their private practice center co-owned by 11 surgeons. I got quality of life surveys in e mails from him for 2 years sniffing for business. By that time, my surgery had already been done at Mayo.

There are many doctor produced videos out there marketing services for surgeons. There are also videos from spine surgery conferences where surgeons are presenting cases to each other, and these usually are unbiased and sometimes honest about the outcome being positive or what could have been better for the patient with a different procedure. Surgeons do tend to speak honestly to other surgeons there and surgeons presenting there tend to be leaders in their field from teaching hospitals and respected medical centers.

Many people have bulging discs. That is different than a herniation where the fibrous outer layer of the disc cracks open and the jelly like nucleus can squish out. When that happens, the disc can loose height, and the extruded material causes inflammation and can cause bone spur growth. Bone spurs and bone remodeling happen because of uneven pressure. I know in my case, my ruptured disc was half the height it was supposed to be and that put pressure on the facet joints which caused some arthritis there. I also had a bulging disc in my thoracic spine and in working with a physical therapist, that straitened itself out and no longer is shown as bulging on imaging, but it was probably minor. I do have a bulging lumbar disc and that level cracks on rotation, but it isn't causing any issues.

You have to weigh your symptoms. Is it something you can live with? If you track your progress and keep written notes, you'll know if you are getting better or worse. I was doing this on body diagrams and drawing maps and defining what kind of pain, time of day, and what body position was associated with it. That is how I knew how fast my condition was changing, and I also saw the amount of bone spurs double around the ruptured cervical disc in 9 months time on MRI imaging as my symptoms were getting worse. I had spinal cord compression and my arms were so weak, I had trouble pushing a shopping cart or driving a car, and then after the exertion, I would have to take a nap because it was physically exhausting.

If you are loosing functions like coordination, bowel or bladder control, having mobility problems or have muscle atrophy caused by nerve compression, that is more serious. That is when you compere the risk of surgery and pain it causes against the benefits you can get from surgery. When you decide on surgery, there are many more things to consider about which procedure or solution is best, etc? Take your time with major decisions like this and getting many opinions is a good idea before making a decision. If you want to get an opinion from Mayo, you'll need to know if your insurance is accepted there, so a call to the billing department is a good idea. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

I can suggest a book that I read called "Back in Control". It was written by a spine surgeon who became a spine surgery patient himself, and he is of the opinion that there are too many unnecessary back surgeries. I found that because he gave a presentation at a spine conference that I found online, so I looked it up and bought his book.
https://backincontrol.com/

One thing to also realize is that contemplating spine surgery is scary stuff for most people, and that fear and anxiety will increase pain levels a lot. If you haven't been through spine surgery before, you don't know what to expect. This is something I had to come to terms with and I learned how to talk myself out of allowing fear and pain to run away with me, and I was able to look at my situation objectively rather than emotionally. I was working with a PT who also doing myofascial release and she kept realigning my spine into the best alignment and doing electric stimulation on the nerve roots to block pain signals, and that helped for about a week. That was before my spine surgery when I was having trouble finding a surgeon to help me, and she was able to buy some time this way. Some patients do spine injections to put off surgery. I had one, but had a bad reaction to it, so I wouldn't do any more of them.

I asked my surgeon what I could do to help me avoid needing his services again. He told me to maintain my core strength to support the spine. I'm glad to know he'll be there for me if I need him.

Working with a physical therapist is a good idea. They can work on core strength and strength for good posture which helps take pressure off your back. They also are a good sounding board to ask questions because they rehab patents after surgery, and they kind of have a sense of who's who among surgeons and tend know the good ones if they have seen their patents after a procedure.

What are the symptoms that you have now? Have the symptoms worsened over time?

Jennifer

Just wondering, how you know that Mayo is not for profit ? I didn't think any hospital in the US was not for profit. I don't have loss of bladder or bowel control luckily, but my other symptoms seem to be getting worse, the throbbing and cramping.

My symptoms are 80% in my legs, my calf muscles throb all the time, worsening after I walk even a few minutes. I also get severe cramping in my calf muscles. The thing that worries me is that my gait has changed and my pelvis seems crooked. I was a dancer so I feel these changes acutely.
I'm a bit angry with Mayo because I asked to be seen there and they turned me down giving no reason and when I asked they cited some legal reason that they didn't have to tell me. Maybe I could approach them again.
As far as PT, I haven't found any that do quality work like what you described except one who dosen't take any insurance. Where do you live if you don't mind my asking ?
You are so knowledgable. Are you in the medical field yourself ?
Thanks for all your help and I will try to get that book you mentioned.

I just read that neurogenic claudication can lead to permanent nerve damage. I am worried that I have it already.

@annie1 I'm glad you are working with a rehab doctor. I know you are worried about nerve damage and I was too with bone spurs pressing into my spinal cord for 2 years, and I did fine. We are all different of course and the best one to advise you about when nerve damage would begin would be your providers. I found this information from the National Library of Medicine that may be of interest.

Spinal Stenosis and Neurogenic Claudication
https://www.ncbi.nlm.nih.gov/books/NBK430872/

You mentioned getting cramps and throbbing pain your calves. Cramps and spasms happen when nerves are irritated and sending signals to a muscle. In biology class, we did some experiments with sending electric shocks to see when the responses changed from a twitch response to a sustained contraction (as in a cramp) and found the frequency and speed of signals that made that happen.

I wouldn't worry that permanent nerve damage has already set in, just do the best you can at rehab. You would probably notice something like that if a function just disappeared and stopped working, but do ask your rehab doctor that question.

Jennifer