Severe Central Spinal Stenosis Symptoms

I had spinal fusion surgery that was originally to only be L5 to S1.
I was told I had bulging and herniated disc and a host of other problems.
My health insurance company did not approve the surgery request and gave my doctor a list of things that had to be completed before they would approve my surgery. The insurance company made me go through more physical therapy and get another more up to date MRI.
After the MRI my surgeon now said I needed surgery from my L3 to S1 vertebra.
Prior to surgery, My symptoms were terrible constant pain from my hips to my feet, both legs. My symptoms were dizzying and been going on for years. I had been in pain management over 2 years.
My surgeon convinced me that I need the surgery so, I got on board with surgery as the fix to my problems. After a couple months of fighting with the insurance company and a 3rd MRI in 9 months my Surgery got approved, and I had my first 10 hour surgery in November of 2022. Then the first week of December 2022 I had my first 10 hour revision surgery, then on December 20, 2022 I had my 2nd 10 hour Revision surgery, then on December 23, 2022 I had my 3 rd and final 10 hour revision surgery.
After 4 surgeries, my pain from the lower back through both legs to the end of my toes is almost unbearable. I lost sensation in both legs below the knees all the way to my toes. Not a complete loss but it's enough that the loss adds lots of extra pain.
I have since found out I am a type 2 diabetic. Makes me wonder if the pain I was experiencing prior to surgery was diabetic nerve pain.
I truly regret having my surgery
I regret not seeking out a 2nd and 3rd surgery evaluation.
My insurance company fought the doctor's surgery recommendation. The insurance company's medical staff said I didn't need the surgery and all conservative methods were not exhausted. Chiropractor's are a conservative method used to eliminate pain originating from the spine.
I wish I would have gone to a chiropractor, at least tried to seek out spine adjust before agreeing to surgery.
I have since been told several times by spine surgeons, I did not need surgery.
I learned a terrible lesson.
Surgery so invasive should have 3 surgeons recommending the same surgery and the recommendations should come from doctors who aren't associated with each other.
I am 67. 3 years post surgery. I lost my job. I have major issues from my belly button down to my toes and no doctor can fix what got broken.
No one should ever tell you what to do or recommend what you should do.
We should only share our stories so you can judge the positive with the negative and slowly piece together your game plan.
I did not ask enough questions about why I needed surgery or what could go wrong. I only heard what could go right. I did not seek out any type of support.
I did not protect myself and now I have to live with what I allowed to happen to me.

Best to get the surgery while you are young and before neurological symptoms worsen. Your symptoms may completely resolve after surgery but in some patients at least some of the symptoms persist. I would recommend a university or large regional medical center. Ask the surgeon how many of your type surgeries he does, the hospital does, his/her complication rate and failure rate. You should be able to find national averages on line to compare.

Changes in blower or bladder function can signal it is time for surgery on a more urgent basis, so be on the lookout

It doesn’t sound like it’s urgent so you have time for third or fourth opinions. Some say the surgeons primary role is in the OR. I believe you can find a surgeon who is technically proficient while also having a good bedside manner and is willing to talk you through the surgery, the recovery, and answer all your questions. You deserve this.

Also before you have surgery you are at an increased risk for complications from falls, car accidents, any kind of neck trauma. So be safe

Thank you for sharing your story, so sorry that you continue to be in pain even after surgery. I have spinal stenosis and a bulging disc at L5-S1, I have had the pain for 8 mth's now, and waiting to get a 2nd injection in hopes that it will help.

I had a spinal fusion 11 years ago. It couldn’t be done until every other procedure was tried like a chiropractor. Physical Therapy, acupuncture, etc. They did the surgery on L5-S1. They sent me home alone without care. I ended up in the hospital emergency room 3 times because I was told that I couldn’t live alone during the 6 month recovery. I lined with my daughter for 3 months after. I am still dealing with pain and working with a pain specialist for 7 years. He tried 7 procedures including a spinal stimulator and nothing helped. I am on Norco. Without it, I couldn’t do the daily routine of life. I’m still limited to what I can do and may try a pain pump to get off of Norco. I am 73 and in perfect health except for back pain. I’m not giving up.

Like you, I needed surgery done on my neck because of a ruptured disc at the C5-C6 level that gave me heart attack like symptoms the day before Christmas eve in 2016. I was also experiencing random shocks of pain all over my body with zero warning for almost 2 years beforehand. After having that procedure done, the random stabbings were 90% better. However, less than 2 years later, I started having symptoms again, and ended up needing another spinal fusion done at the C7-T1 level in 2018. Since then those issues have been mostly addressed, but I still have to deal with osteoarthritis and neuropathy in my feet.
My recommendation would be to have the procedure done, since you haven't even hit 50 yet. The younger you are the faster you should be able to recover.

@oldferryroad Thank you for sharing your story. It's just as important to hear a story like yours with the honesty of disappointment. It is easy to rush into surgery when a patient is in pain and if a surgeon ever pressured me, I would run away. It takes patience to get several opinions and that can take time when you have to wait for appointments. I'm sorry that you find yourself in this position, but I applaud your courage to speak honestly about the dangers and risks of major surgery. All of us need to advocate for ourselves and ask many questions not just about what could go wrong, but about what other conditions can produce overlapping symptoms (called a differential diagnosis), and also what would your future be if no surgery is done.

I don't know if this may help, but if some of your pain comes from the excessive scar tissue you have from the surgeries, there is a physical therapy technique called myofascial release that can stretch out the scar tissue and tight tissue. It can help get fluids circulating in tight dehydrated tissue. Sometimes that can ease pain. I have done this MFR stretching for years and it has helped me a lot. I have stretched out surgical scar tissue from cervical spine surgery and an ankle fracture.

Here is our MFR discussion where you can learn more.
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Thank you for the information about MFR. I live in Northwest Florida and for us, we do not have a large population so we do not get the quality of care that larger populated areas get.
Not criticizing the medical professional in our area, just stating a fact.
We also have a problem with getting specialized medical help. We can wait 6 months to a year to see a specialist. Then the diagnostic process after seeing the specialist, runs in 6 month increments. So, from referral to diagnostic imaging, to diagnosis can take over a year. For some, a very painful year.
This timeline impacts the desire and decision to seek out 2nd and 3rd opinions. But I learned a lesson in patience. My pain was not life threatening. My pain was life interfering. I let my impatience alter the remaining years of my life in an away I never thought about. My impatience made my life interfering pain, permanent.

Thank you very much for providing information about MFR. I will looking this form of physical therapy and report back.

I will report back but it may take months because physical therapy appointments take months to start.

@linda6101 I am on Oxycodone 7.5 4 times a day. Without the Oxycodone I could not function. I wonder what the Oxy is doing to my brain, liver, and kidneys. I have been on Oxy for over 3 years. I was on Hydrocodone for 2 years prior. I am labeled a chronic opioid user by the medical profession. Any medical procedure I have requires strong pain meds for longer periods of time than the average person.
I have ingesting the pain meds. I do not feel like the alter my thoughts or behavior but I cannot believe they don’t.
If you were to speak to me in person you would never know I was on the meds. My pain management doctor told me he could tell if I am lying about pain. He balance my meds based on my reaction to the dose.
What a pain. I hate the necessary evil.
My biggest issue with the pain meds is they really don’t eliminate the pain, they numb the pain. Odd but true. I was admitted to the hospital several times and was given a pain meds called Roxy. Roxy took away my pain and didn’t make me feel, blah. I forgot to mention that Oxy makes me feel blah. I know there are irritants in Oxy to keep folks from becoming addicted, but give me a break. Why am I not prescribed Roxy. My pain is permanent and it is very obvious I have pain. If society is worried about my addiction, society can shoulder my pain.
I find it very odd that that the medical world withholds medication that eliminates pain from chronic pain patients. Why? Why should I be in terrible pain 24x7 when there are medications available to make me more comfortable?

@jcarver1349
I was misdiagnosed for 5 years and then my 4th spine surgeon finally diagnosed me with degenerative cervical myelopathy spinal cord compression injury at C5-C6. This caused me daily headaches, neck/shoulder/shoulder blade pain, arm/hand/finger weakness, clumsiness and numbness (dropped things and handwriting noticeably worse), bladder control issues (incontinence), heaviness in legs when walking (like wearing cement boots which slowed my walking when I was normally a very fast walker), balance issues, etc. When finally diagnosed in late 2021, I was 52 (47 when symptoms and imaging started to show the problem).

I ended up having ACDF surgery to stop the progression of the spinal cord injury which can become permanent if not addressed. My symptoms improved after surgery but I have residual shoulder/arm/hand weakness due to delayed diagnosis and treatment.

I had a 2nd ACDF surgery on C6-C7 due to a new herniated disc in 2025. I have a congenitally narrow spinal canal which causes many problems with any degeneration. I also had L3-L5 decompressed/fused in 2024. I may need more surgery in the future (have adjacent segment severe stenosis and herniated disc now at L2-L3 and hypermobile which isn’t good for joint stability).

You may want to consider surgery if progression and permanent injury is a risk if not done.

@linda6101
Be aware that a pain pump could result in you developing Adhesive Arachnoiditis, to which there is no cure. And it is very painful.