Severe spinal stenosis: Would you do surgery?

Posted by collierga @collierga, Jan 15, 2020

Hi there
I am new to this group. I am a 64 yr old female, in basically good health. Hip replacement 10/2018 with no complications.. Currently have no pain only bilateral finger numbness with minor lower left arm numbness. For the most part does not interfere with my daily living activities
Diagnosed with severe cervical stenosis via MRI in 8/2019,C-3-4 shows severe disc degeneration, moderate to severe bilateral formalin narrowing due to uncinate spurs/C4-5 same as 3-4 but with broad based disc bulge/5-7 C7-T-1 Degenerative anterolisthesisBroad based disc/osteophytic ridge causing severe central canal narrowing. i have gone to 2 different Neuro surgeons they both say complete opposite treatment plans. One says observe see him if symptoms get worse. The other doctor wants to do 2 surgeries, first through the front, #2 through the back to stabilize. I am leaning towards no surgery but am looking for someone to tell me they had this surgery and are happy t hey had it done. So far when i talk to people with back/neck issues they say they would never again go through surgery.
Thank you all in advance for you opinions..

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@jenniferhunter

@collierga Trust your gut. I got a lot of pressure and a scare from a local surgeon who was telling me I had significant spinal cord compression, and he was the one who owned a private surgical facility with 10 other doctors. I was going to do the surgery with him, but he backed out because I had leg pain and dizziness. He told me to go to a rehab doctor and fix that first, then I could come back to him for surgery. I couldn't fix anything because it was the spinal cord compression that was causing pain all over my body and the muscle spasms were causing the dizziness and no one understood that. I went to a rehab doctors office recommended by the surgeon, but they had mistakenly not actually scheduled my appointment. That is when I sought another opinion and never went back. This doctor sent quality of life surveys to me for 2 years when I had not had any contact with his office and by that time, my spine had already been repaired. No one in his office called to check with me, it was just the marketing communications sniffing for business.

My all over pain symptoms were misunderstood by 5 surgeons. It's called funicular or referred pain, and I found medical literature with cases like mine that said it was a rare presentation of symptoms. None of the 5 would help me, and I came to Mayo. It shouldn't feel like a sales pitch. It should be an honest conversation and you are part of the team that has come together for your benefit. Driving 2 hours to a teaching hospital would definitely be worth it if you find a great surgeon. I drove 5 hours to get to Mayo. I was driving 2 hours to the other surgeons who were not going to help anyway. When interviewing surgeons, ask for their specific success rate for the procedure they recommend and make sure later to look up their licenses and if there has been any actions against them. Also ask about what hardware is used and what complications can happen. Search for studies about the hardware from that manufacturer. I was lucky that I had only one damaged level, and I as able to have a fusion without hardware. I stayed in a neck brace 3 months. I worried about immune reactions, and the possibility of failure. There is a lab in Chicago, Orthopedic Analysis that does immune testing for surgical implants. Of course, you could develop an immune response at a later time. You also should pay attention to muscle loss of volume. If you see that even if you feel no pain, it can signal nerve damage. I don't know if you have had nerve conduction or EMG studies, but my experience was that in the nerves that were malfunctioning and related to my muscle loss, I didn't feel pain in those areas during that test. The other nerves hurt a lot because they were working. You might want to consult a neurologist in case this happens to you. I wanted to mention that because no pain doesn't always mean there is no damage. Find a surgeon you are interested in first because often they refer to specific neurologists they work with. I had to be retested by a neurologist when I came to Mayo and before my consult with the surgeon. If you have any other questions or concerns, please ask. I'm happy to help.

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Hello, I’m hoping you would be willing to guide me. I was a hair stylist for 30 yrs. I went on disability 10 years ago due to shoulder, neck and back pain. I was told I needed cervical spine surgery 10 years ago but I have heard so many awful stories that I’ve tried everything to put it off. I cannot stand or sit for any length of time before I need to recline (45 degree angle helps, sometimes flat on my back). The predominant pain is in my thoracic, mid back. I’ve been reading, watching utube etc and see that in severe cases (mine is severe bilateral neuroforaminal stenosis impinging on bilateral-6 nerve roots, amongst other things…) paralysis or other unwelcome things can occur if it isn’t repaired. I live outside of Jacksonville and am on Medicare with no supplemental insurance. I need help finding the right surgeon and supplemental insurance. My sister is near Rochester, MN’s Mayo so that may be a possibility too. I’d really appreciate any help you could offer. Thank you!

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@debralou

Hello, I’m hoping you would be willing to guide me. I was a hair stylist for 30 yrs. I went on disability 10 years ago due to shoulder, neck and back pain. I was told I needed cervical spine surgery 10 years ago but I have heard so many awful stories that I’ve tried everything to put it off. I cannot stand or sit for any length of time before I need to recline (45 degree angle helps, sometimes flat on my back). The predominant pain is in my thoracic, mid back. I’ve been reading, watching utube etc and see that in severe cases (mine is severe bilateral neuroforaminal stenosis impinging on bilateral-6 nerve roots, amongst other things…) paralysis or other unwelcome things can occur if it isn’t repaired. I live outside of Jacksonville and am on Medicare with no supplemental insurance. I need help finding the right surgeon and supplemental insurance. My sister is near Rochester, MN’s Mayo so that may be a possibility too. I’d really appreciate any help you could offer. Thank you!

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@debralou My advice is call Mayo and ask what supplemental insurance is good there that they do accept before you purchase a policy. There may also be a difference in Medicare and what is accepted at different Mayo campuses. Make sure you ask about preexisting conditions when purchasing insurance in case there is some waiting period for coverage and know what your plan would cover and when it would be maxed out. Spine surgery is very expensive and you need to be in network for coverage. Medicare payment rates of reimbursement to hospitals are low which is why some doctors or facilities don't accept Medicare. Having a family member near Rochester would help a lot because you would not have lodging expense on top of travel and medical bills.

You may find billing and insurance related information at this link https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

Ten years is a long time. You have been living in pain for quite awhile. Every patient is different. I had a great outcome and came to surgery with a great attitude that I would have a positive outcome, and of course, I picked a great surgeon. Is there anything else about the surgery that you have questions about? Are you considering surgery?

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@jenniferhunter

@stantallusa Oh, I am sorry it didn't work out. I do know how that feels because I was turned away by 5 local surgeons before I came to Mayo. I do think it helps to focus on what ever the main issue is when you apply for treatment. Surgery can also make a patient worse, and a doctor even told me that because he misunderstood my case. I know Mayo gets many more requests for appointments for neuropathy than their availability. I got in because of a structural spine problem that could be fixed by surgery, so it was a clear cut case and I had not had other spine surgeries or scar tissue that would affect my spine.

Would you consider seeking treatment at other multi-specialty medical center like Cleveland Clinic? They are similar in approach to Mayo from what I have heard. I don't know the specifics of your case, but sometimes it helps to find medical literature with similar cases. That helped me because I found what the doctors had missed, so when I asked for help at Mayo, I sent the medical literature in with my request. If you wish to share information, I can try to help search for medical literature of similar cases. May I ask what it is that is crippling you and if it is something that can be treated?

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Main issue is my back. Lumbar area. I had prostate removed using that robot device. I was in a crazy head down position. I have read many post from people and it seems like I was probably not supported correctly. Probably damaged nerves in the lower lumbar. I had 4 injections and the burned7 nerves. I was better for a short period of time before the pain returned. I am very afraid of spine surgery and would not allow any of the local doctors to do this. Too much of a risk of bad outcomes. Oh well. I don’t know much about the Cleveland clinic. Thanks for the response

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@jenniferhunter

@stantallusa Oh, I am sorry it didn't work out. I do know how that feels because I was turned away by 5 local surgeons before I came to Mayo. I do think it helps to focus on what ever the main issue is when you apply for treatment. Surgery can also make a patient worse, and a doctor even told me that because he misunderstood my case. I know Mayo gets many more requests for appointments for neuropathy than their availability. I got in because of a structural spine problem that could be fixed by surgery, so it was a clear cut case and I had not had other spine surgeries or scar tissue that would affect my spine.

Would you consider seeking treatment at other multi-specialty medical center like Cleveland Clinic? They are similar in approach to Mayo from what I have heard. I don't know the specifics of your case, but sometimes it helps to find medical literature with similar cases. That helped me because I found what the doctors had missed, so when I asked for help at Mayo, I sent the medical literature in with my request. If you wish to share information, I can try to help search for medical literature of similar cases. May I ask what it is that is crippling you and if it is something that can be treated?

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Thanks. I have contacted Cleveland clinic. Waiting for a reply.

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I had this surgery in 2019 and I so glad I had it.

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@dianecostella

I had this surgery in 2019 and I so glad I had it.

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Did you have anterior and posterior?
Any residual effects?

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@collierga

Did you have anterior and posterior?
Any residual effects?

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I had posterior. I had two fusions 4/5, 5/6 as well as disc replacements on both. I had very little pain and no residual effects. I did have to go to PT though.

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Add me to the group who would opt out of surgery. I had L3-4 fusion and since then I suffer from adhesive arachnoiditis- a disease that causes more intense pain than bone cancer. Discuss this possible outcome with your doctor first.

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I developed something called severe canal stenosis after 20 years of construction work. It took me a good 17 months after surgery to come close to feeling normal. I really missed the construction work money, so I went back. In less than two months I undid everything the surgery had repaired and now have three other issues and horrible pain I live with. If you do opt for surgery, please take care of the good surgeons work and use moderation and common sense in your activities. Most of us aren’t millionaires with access to daily year round top dollar therapy. Can’t gamble with your spine after surgery.

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Severe Stenosis, compressed C3-5, active lifestyle. Told by a neurosurgeon, neurologist, orthopedic surgeon and PT I must have several fusions to avoid paralysis. Told I missed a spinal cord injury on last Nov. fall on hike that broke my clavicle. Still healing clavicle in PT after removing metal from severe break. I atrophied. I have neuropathy in limbs at times, radiating pain down arms. Legs have more sporadic numbing and sharp pain sitting, lying down... in feet too. I am doing less now, but love hiking, biking, yoga, travel, working out being strong. I am only able to see one neurosurgeon with my insurance. He is rated well.

A nurse gave a seminar with a handbook which stated activities can combat stenosis. I realize mine advanced more, but can activity change this condition?

I have many surgeries and metal pieces due to a trauma. Red light runners caused damaged.

What do you suggest?

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