Severe Stenosis - Doc advises surgery

Thanks for your response. I know that no surgeon can commit to a specific outcome but I think it's reasonable to want a realistic assessment of possible outcomes. If I see one experienced surgeon at a major teaching hospital that recommends surgery and another equally credentialed surgeon who says no surgery how can i make an educated decision that, one way or another will impact me in such a profound way? I don't understand why information about the number of patients with comparable issues who experience an improvement, no improvement or deterioration is so elusive. My goal is utilizing evidence based medicine along with specific information regarding specific results from a specific surgeon. I don't expect predictions or guarantees but in my opinion, patients deserve all the available facts before arriving at a decision. When I ask a surgeon questions about how long are surgical patients are followed, how many require a second surgery, what is the best and worst outcomes of surgery, how often do they occur etc. there is resistance and I'm told as you said "role the dice". Back surgery is a big deal and I really don't know how to proceed without some data. I think patients have the right to all available information.

@kdks99 Instead of asking specifics and statistics of “how many” patients experience a particular result, it may make more sense to ask “why” an outcome occurs or “what” other health issues or patients not following medical advice contribute to a negative result. You could also ask how your condition may change over time without surgery. It may help to work with a physical therapist so you can ask these questions there as well. PT’s who have experience rehabbing surgical patients are a great source of information. You also need to have a mind body connection to be able to understand in 3 dimensions how your body works physically and what limits you. That may help in your decision.

There are too
many variables for surgeons to predict exactly what your experience will be and if they did that, it probably would set a precedent that could bring on a legal challenge from anyone who wants to complain.

Here is simple example not related to medicine. How many gallons of paint does it take to paint a house and can that be predicted exactly? It depends on coverage and square footage. Does everyone paint exactly the same way and same thickness? No. Using a roller vs a brush, which one absorbs and holds onto more paint causing a bit of waste? How does the weather affect the job? Did it rain and wash away paint that wasn’t dry? How does humidity or lack of it affect drying time and paint layer thickness? Did any paint get accidentally spilled?

It is impossible to predict exactly how much paint and time are required in this example. You can estimate it and when you don’t have enough to finish the job, you can go back to the store.

You have to trust yourself to make the best decision that you can. If you know why problems occur, you may know how to avoid them or to lessen your chances of it. Surgery is a compromise and it has a risk to benefit ratio. That is what the doctor is telling you with statistics. Ask how you can improve your chances to have a great outcome and what you can do to assist in that outcome. I think your surgeon will be more receptive to that question. They put their reputation at stake with every surgery and they don’t want a bad outcome for you or themselves.

In the end, it is your decision.

Thank you for your comments. I have seen multiple physical therapists. The most experienced with spine patients said " very very few people should get spine surgery" All the other PTs I've seen were totally noncommittal. Yes I want to be able to make a risk/benefit analysis before deciding but I need information in order to do that and it is very hard to get the information that would facilitate my ability to make an informed decision. How can I trust myself to decide without information?

I guess I keep looking for a surgeon who will provide information and communicate in an open and forthcoming manner. If I could find this person I'm sure I could make the best decision knowing that there are no guarantees with any surgery.

@kdks99 If this helps, this is how I made my decision to go forward with spine surgery. I was suffering from spinal cord compression in my neck and was loosing the coordination in my arms. I was so weak that driving a car or pushing a shopping cart was completely exhausting. I lost muscle to atrophy on the back of my upper arm and shoulder. I was walking with a limp I couldn’t control when my vertebrae shifted making the spinal canal smaller. I had trouble emptying my bladder and knew that could progress to incontinence if it got worse. I was taking care of elderly disabled parents both in wheelchairs and I knew that could be my future. There was pain all over my body. I had vertigo because a muscle spasm rotated C1 and C2 and the world started spinning around me. I had also worked for years to develop my talent and ability to work as an artist and loosing that was breaking my heart. I couldn’t hold my arm up to paint and my last painting was done by propping my arm on a Walker that my mom couldn’t use anymore.

I did have the advantage of a science degree in biology so I could understand medical literature and I watched as many videos from spine surgeon conferences as I could find online with free access. I looked up everything in my medical records. Actually, I found my correct diagnosis in literature and the first 5 surgeons who examined me missed it completely. I did all of this while I was having panic attacks because I was afraid of surgery and I dissected that and deprogrammed my fear. It was a decision of facing my fear or becoming disabled and loosing what I loved to do with my art work. The medical literature indicated that a possible clue on my condition called "funicular pain" was having results from an epidural injection that takes away all the pain. I did have a diagnostic injection and it took away all the pain everywhere in my body temporarily, 5 days total of pain free. The surgeon at the time expected a different result, so he ignored this information because he didn't understand why it worked.

With that newly found medical literature in hand, I requested an appointment at Mayo and I had successful surgery. I was so happy with my results that I wrote a complimentary letter to the CEO of Mayo about the surgeon who gave me back my artistic gift. He didn’t do it alone. He had his team and I joined that team to insure my success. I expressed my ultimate gratitude to my surgeon with the first post surgical painting of his portrait which was my gift to him.

Here are a few takeaways for you. I had no assurance and several wrong guesses from surgeons about what was wrong and causing my symptoms.

I knew how to turn pain symptoms on and off with neck positioning and had tracked the progression of my symptoms, so I knew without a doubt that I needed surgery to decompress my spinal cord and the symptoms were related to my spine condition. It had progressed far enough to cause an electric shock down my entire body if I bent my neck forward.

I did not have stenosis in the foremen around the nerve roots, but I could side bend my neck and hit those nerves because the space was smaller with the disc collapsed by 50%.

With all of the fear I had to conquer, I wasn’t a patient who would gamble, but I reached a point where I knew more about why my condition caused my issues than the 5 surgeons who got it wrong.

My surgeon at Mayo was not only excellent at his job, but he really listened and understood what I needed and he offered to help. My physical therapist did myofascial release work that loosened up the muscles which made it easier for the surgeon to retract during the procedure. MFR also helped loosen up surgical scar tissue after my recovery.

I was on my own with my decision for most of my journey and I took it one step at a time and figured it out. I have no regrets and I got my life back because of spine surgery.

My story
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I’m so glad your surgery went well and I really thank you for sharing about your experience. My issues are due to a degenerative lumbar spine. It is my impression that surgery for the cervical spine is more predictable and has a more likely positive outcome.

I have two graduate degrees and my husband does research for the NIH so we’re good at gathering research and evaluating the quality of research but that still leaves me with many questions and very few answers.

Again, thank you for taking the time to respond to my posts.

@kdks99 There is also a book "Back in Control" written by a spine surgeon, David Hanscom MD, who became a spine surgery patient. It may give you some insights. Here is his website. He is retired now from practice, and he said that there are too many unnecessary back surgeries, so at least he represents that point of view. I found out about him because he presented at a spine surgery conference and I found that online. I bought his book and read it and thought it was excellent back when I was still looking for a spine surgeon.

These are amazing discussions. Every potential back (cervical is way different than lumbar - I’ve had both) patient should read the comments.

One quibble. I keep reading that back surgery is a compromise as the ultimate outcome is not predictable. I propose that surgical decisions (maybe all medical decisions) are more about managing personal risk. At the surgical decision point the potential patient is in a downward cycle of pain, debilitation, and deterioration. Those worsening symptoms being felt are NOT going to magically reverse themselves. You reach a point where doing nothing is no longer tenable.

But no surgeon can say with exactitude (multiple reasons) what your particular post surgical outcome will be. Of course you are frustrated by this lack of specificity. Of course you deserve more focused answers.

So now the risk management. You can either (a) continue on the current path and what that can lead to or (b) risk a serious back surgery with an unpredictable (to some degree) outcome. Crummy choices to have to make.

So manage your risk the best way you can. Best facility. Best diagnostic equipment. Best surgeon(s). Get yourself in the best pre-op physical condition as you can. Think positive thoughts. Have the best PT care ready for you post surgery. Follow all medical instructions.

You’ve managed all your risks as best you can. Then - it’s time to trust your process, make that decision, and transition to execution knowing you did everything you could to manage your risks.

And hope for the best. There simply aren’t any guarantees.

@upstatephil Well stated, Phil. Would you share some more pearls of wisdom from your experience? May I ask what were your decision factors that influenced your commitment to go forward with your surgeries? How did you know you were making a good choice to manage your risks? Did your recovery turn out as you anticipated prior to the procedures? If you have another spine condition in the future and needed to consult a surgeon, would you do anything different next time?

Thanks, Phil. I look forward to your response.
Jennifer

I will think this through and respond.

Thanks to all for opening this discussion and for every post with such good information. I first saw a spine specialist who said there was a surgical option but he wouldn’t do it; referred me to PT and pain management. After a year and a half of PT and increasing opiate dosages, he finally provided a report to my PCP recommending a second opinion from a teaching hospital.

My story briefly. I have severe adult-onset scoliosis. I lost 7” in height in the last three years, am reduced to using a walker 24/7, or being pushed in a transport wheelchair for anticipated walking more than a few minutes. I cannot stand for more than five minutes. My condition causes incontinence. I have been receiving epidural injections and had an RF ablation that helped with pain for only a few months. I prefer the results of the epidural steroid injections. I need strong opioids to control the pain in addition to the injections. My symptoms are rapidly worsening.

These symptoms cause me to welcome surgery at the second opinion teaching hospital to which my PCP had to source himself in order to refer me.

I finally have hope! I considered all the risks, especially at my age of 71. I will have pins set in my vertebrae and rods installed on either side of my spine.

I just completed the first step in this year-long process which is current imaging of my hips, spine and skull.

I suggest you consider your own symptoms, the risks and what your future looks like without having surgery. Good luck and God bless you!