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benjamin8161 (@benjamin8161)

Herniated discs at Levels L4/L5-S1

Bones, Joints & Muscles | Last Active: Jan 19, 2020 | Replies (9)

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@flscottybingo

Good morning! I have severe spinal stenosis 3 severely herniated discs, nerve compression, and arthritis. I have also develop a mild foot drop as well as numbness in my left leg below my knee. (the numbness increases when I get into a pool, and none of my Dr.s can explain why that is). I have dealt with this condition for almost 28 years, (i am soon to be 49), my body has adjusted to some of the pain, and modified movement. I have consulted 5 different surgeons Orthopedic, and Neuro). These are only the surgeons that I have consulted in the past 2 years. They all agree that surgery is needed however, I cannot get 2 to agree on the method. procedures from lamenectomy, to a full fusion from L2-L5 S1. I had an MRI in 2017, and then another in 2019- the 2 indicated only mild changes. I have treated with pretty much all of the non surgical solutions to avoid surgery. I know that I am rambling, but please continue to read. I sent my MRI to a non-invasive surgery center- they did not even reply. I have been told that non-invasive for this extensive surgery is not an option at this time. Some of the surgeons that I have seen say that I should continue to wait until I start becoming incontinent, or until I become paralyzed from the waist down, as they have indicated this will be the ultimate outcome. I have read reviews on this surgery, and it seems that that majority of people do not have success with their surgery (there is a difference between what we consider success and what the surgeons consider success). I continue to be of the mindset that if I can manage my pain level and continue to move relatively well, I will continue to post pone this surgery until I start to experiencing the previously noted outcomes. The Dr. has indicated that the surgery would relieve leg pain but not the back pain, my leg is numb, but rarely causes pain as I can't feel it. I just don't know what to do, it is such a life altering decision, I am single and live alone, so the recovery/rehab is also of a serious concern. Currently I am able to perform some of my ADL's with assistance from various medical equipment (walker, shower chair) etc. My pain level is being controlled relatively well on pain meds. but at this point I am just at a loss, the surgeons don't want to do surgery, they say that I am too young, and that if I had surgery at my age, I would most likely require multiple surgeries to revise the fusion. My condition as been relatively stable, so I don't want to "rock the boat" because I think that if they get in there, they will have things that come up that they did not anticipate, and then I will become unstable. I am wondering what people with the similar issues would advise.

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Replies to "Good morning! I have severe spinal stenosis 3 severely herniated discs, nerve compression, and arthritis. I..."

@flscottybingo Good morning. I am a Mayo spine surgery patient and my surgery was a cervical procedure and I had an excellent outcome. You are correct in that surgery at the lumbar end of the spine is more involved and can be a more difficult recovery because that end of the spine is bearing most of the body's weight, and twisting or bending will place more pressure on surgical hardware constructs. The angles and placement of that is very important or screws holding the hardware can pull out from the pressure. My PCP said it should be given careful consideration. The choice of a spine surgeon is very important. Some are gifted, and some are not. Surgery can make a patient worse, but also has the possibility of significantly improving the life of the patient.

Your comment stood out to me, "Some of the surgeons that I have seen say that I should continue to wait until I start becoming incontinent, or until I become paralyzed from the waist down, as they have indicated this will be the ultimate outcome."

This would indicate an emergency situation.

As a patient, why would you want to see a surgeon who paints this picture for you, that you will have a poor outcome regardless of treatment? Wouldn't you rather see a specialist who has had more experience with cases similar to yours? Surgery can make you worse, and there are a lot of health factors that play into that, but you as a patient have a lot of power over your own recovery. You need to be able to go into surgery with proper expectations, and with the belief and knowing in your heart that you have the will to succeed. Doctors cannot do that for you.

When you get multiple opinions, there can be different surgical procedures to address the same problem. It's your job to ask why and how a specific procedure can help, and ask the doctor for their specific personal success rate with the procedure in comparison to a possible other procedure. Also ask what will happen if no surgery is done, and what disabilities are likely in your future. Nerves can be permanently damaged if surgery is not done in time, and permanent incontinence can be caused by spinal cord damage, and that can be prevented with surgery. Does it really make sense to wait for that to happen to you?

My surgeon didn't promise me that surgery would cure my pain, but it did. I actually had pain all over my body, leg pain and difficulty walking (uneven gait) and retention in my bladder and that was caused by spinal cord compression. My MRI did not show spinal cord damage, and my surgeon told me that you can have myelopathy that does not show on MRI in earlier stages. The reason they do surgery is to decompress and prevent further damage and to correct a structural problem and increase stability. My all over pain was called "funicular pain" and 5 surgeons misunderstood this and could not connect that to my imaging, and they wrongly suggested other problems like MS as a possible cause of that pain and differential diagnosis. They have to be careful to identify the source of the pain, because spine surgery won't help pain caused by something else. They did not want to have an unsuccessful surgery that didn't solve the problem, and it was easier to back out or blame something else as the cause. If I had listened to them, I would have disabilities now. During those 2 years that I was looking for help, I was also reading spine research papers, and watching online presentations of spine surgeons discussing cases at conferences, and I learned a lot. I knew other solutions were possible, and I knew that I could change the location of my pain by a change in body position by turning or bending my neck. I told the doctors, but they didn't listen or believe me. No doctor wants to fail, and when they are not sure about something, they back out.

I found medical literature with cases similar to mine, and I wrote to a surgeon at Mayo and sent the study with my request for an appointment. I chose carefully each time I requested to see a surgeon by looking at their background and how respected they are within their field, their research and areas of interest. I picked a surgeon trained at Mayo in neurosurgery who was a spine deformity expert, and who also had orthopedic spine surgery training. He teaches at Mayo and does both fusion and artificial discs, and deformity surgery like scoliosis and he also teaches surgery lab courses at conferences. He had been recognized in his undergraduate studies with a scholarship. I knew that he would understand my all over pain because one of his papers talked about leg pain with cervical stenosis and had the term "funicular pain" and when I looked that up, I found the case studies like mine. I knew his areas of interest matched my case and that he had more experience than a lot of the other surgeons who had refused to help me.

You have to be careful reading reviews by patients. Some have the wrong expectations or do not follow doctor's orders. Some have other health conditions that affect surgical outcomes. They may have poor bone quality, osteoporosis or be a smoker, or have an inflammatory type disease. Some have a personality conflict with the surgeon. Some don't understand enough about their case to be able to understand and explain it. This is the reason that when you have a complex case with multiple levels involved, you should seek the best highly skilled expert that you can find who only does spine surgeries. Non-invasive and laser surgery will not be able to address a complex case like yours. Laser surgery cannot remove a faulty disc, install hardware, or a bone graft. When the surgeon can see everything in an open surgery, it's easier to fix it instead of trying to operate through a small tube inserted into the site. When I watched the spine surgeons talking in their online presentations, they made unfavorable comments about laser type surgeries. This is why they didn't reply to your inquiry. Take your statistics of surgical outcomes from the surgeons who can evaluate your case and how that would relate to your possible outcome.

You are the captain of your ship, and you decide if you want to hire a doctor for the job that you have. You should not need to beg for help or worry about rocking the boat. If a surgeon is surprised by what they find during surgery, they didn't do their job well enough to prepare for that surgery. I asked my surgeon if things could be unexpected based on what the imaging showed, and he told me that he doesn't find expected problems when he gets into surgery. A surgeon has to offer surgery to you, but you get to decide if this is the surgeon you trust and if you agree with the plan of action. Keep seeking opinions until you find the right one, and go to the best of the best surgeons at major medical centers with teaching hospitals. If you can go to Mayo, I highly recommend it. I didn't know care could be like that, efficient (figured out everything in 3 days) and I was offered surgery right away, and had a wonderful outcome and everyone was so kind to me and very good at what they do. I wish I hadn't wasted time with surgeons who didn't want to help and didn't understand the situation. You can't do a big surgery like this and rehab alone. You will need help, and sometimes patients go to rehab facilities post op for a few weeks. You won't be able to drive. Ask yourself what you want for your life and what is possible. Here are some links with my story and a few others about my surgeon. Let me know if I can be of further assistance.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
My patient story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
https://www.bsualumni.org/young-alumni-award-dr.-jeremy-fogelson
https://www.beckersspine.com/spine-leaders/item/37080-spine-surgeon-leader-to-know-dr-jeremy-l-fogelson-of-mayo-clinic.html
Mayo Clinic Minute
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-scoliosis-screening/
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/?utm_campaign=search
http://www.startribune.com/in-second-term-minnesota-gov-markdayton-dealing-with-more-health-problems/361662931/
http://www.startribune.com/gov-mark-dayton-to-undergo-third-back-surgery/497015811/