Spinal Stenosis+Spondylolisthesis+Scoliosis- suddenly are problems

@libertyusa
It sounds like you’re facing a complex and frustrating situation with your spinal health, and it’s understandable to feel overwhelmed after experiencing a sudden decline in your quality of life. I am in my 50s and had c5-c6 surgery in 2022, L3-L5 surgery in 2024 and c6-c7 surgery mid June 2025. This was needed due to spinal cord/nerve root compression and degenerative disc disease causing neurogenic claudication and pain/weakness/numbness. I am in my 50s. Do you feel you are being dismissed due to your age? If so, keep advocating for yourself and your health to improve your quality of life. Do you have any family or friends who can help you advocate for yourself at doctor’s appointments? How many orthopedic spine specialists/surgeons have you seen and how many opinions have you received ?

Here are some suggestions and considerations to help you navigate your next steps:
1. Understanding Your Conditions
Scoliosis: This condition can lead to uneven pressure on the spine and surrounding muscles, potentially causing pain and mobility issues. Addressing scoliosis may help alleviate some of your discomfort.
Spinal Stenosis and Spondylolisthesis: These conditions can also contribute to pain and mobility challenges. It’s important to consider how they interact with your scoliosis.
2. Prioritizing Treatment
Addressing Scoliosis First: It may be reasonable to focus on scoliosis if it is causing the most discomfort. A specialist in spinal deformities can evaluate your condition and recommend appropriate treatments, which may include physical therapy, bracing, or surgical options if necessary.
Sequential Approach: After addressing scoliosis, you can then focus on managing spinal stenosis and spondylolisthesis. This approach allows for a more targeted treatment plan.
3. Seeking Specialized Care
Large Medical Centers: Considering your history and the complexity of your conditions, seeking care at a large medical organization with a multidisciplinary approach is a good idea. Institutions like the Cleveland Clinic or Mayo Clinic can provide comprehensive evaluations and treatment options.
Mayo Clinic: While Mayo Clinic has a strong pediatric presence, they also provide adult care. You can contact them directly to inquire about adult services and whether they can accommodate your needs. They have a reputation for thorough evaluations and innovative treatments.
4. Finding the Right Specialist
Spine Specialists: Look for orthopedic surgeons or neurosurgeons who specialize in spinal disorders, particularly those with experience in treating scoliosis in older adults. They can provide insights into your specific situation and potential treatment options.
Second Opinions: Don’t hesitate to seek second opinions from different specialists. This can provide you with a broader perspective on your treatment options and help you feel more confident in your decisions.
5. Utilizing Physical Therapy
Continued Rehabilitation: Engaging in physical therapy can help strengthen your back and leg muscles, improve your posture, and enhance your overall mobility. A physical therapist with experience in spinal conditions can tailor a program to your needs.
Walker Use: Using a walker is a practical decision to enhance your stability and confidence while walking. It’s important to prioritize safety and mobility, and there’s no need to feel embarrassed about using assistive devices.
6. Emotional Support
Mental Health: The emotional toll of dealing with chronic pain and mobility issues can be significant. Consider seeking support from a mental health professional or joining a support group for individuals with similar conditions. This can help you cope with feelings of frustration and loss of confidence.
7. Documenting Your Journey
Medical Records: Keep a detailed record of your medical history, including MRIs, X-rays, and any treatments you’ve received. This information will be valuable when consulting with new specialists.

It’s clear that you are proactive about your health and seeking the right path forward. By focusing on specialized care, prioritizing your treatment options, and utilizing support systems, you can work towards regaining your quality of life. Don’t hesitate to reach out to medical professionals and advocate for your needs as you navigate this journey.

It seems like a doctor needs to pinpoint where the exact cause of the pain is coming from. PT can help with that also. Have they ever done any injections to see what works or which area is the most painful. I too had lumbar spinal stenosis and spondylolisthesis above and below L4/L5. I went to Mayo as another institution “did not know why I had so much pain”. On my initial interview, they looked at MRI and had the exact place they thought was causing my problem. An injection that day, gave me unbelievable relief for 5 months, and confirmed their suspicions. The other institution’s pain management had wanted me to undergo a different type of injection that would not have worked. I stayed active for 2 yrs using injections and then developed neurogenic claudication and it would take 4 hrs to be able to stand after being in bed. I had to have a friend drive me the 8 hrs there and 8 hrs back as I could only tolerate lying. I then opted for just the laminectomy without spinal fusion knowing that I may need the fusion later. It was the best decision to go to Mayo and quit the lack of care/guessing/wasting time/excess testing w/no decision/plan. I am still doing well 3 yrs after laminectomy.
I wish you all the best and hope you get a plan that lets you get back to living as you want!

Consider what your activities of daily living were before you moved to the mid-west and compare them. What are you doing differently? Also, with your age (sorry) our spines continue to breakdown and we suffer as life continues. I’m 74 and had fusion is 1990 L4-S1 with stainless steel plates and screws. Since then I’ve been diagnosed with scoliosis, osteoporosis, osteoarthritis, multiple lumber vertebrae with bulging discs and foramen neuropathy, bilateral peripheral neuropathy arms and legs. I to am very active walking 2 miles daily, GYM 2x a week, home exercises 2x day. The more I move the better I feel. I’m now feeling my thoracic scoliosis is worsening since I’m having more back spasms in that area on the weaker side. I’ve accepted my fate and my back will eventually give way and win.
I can understand how you must feel but you cannot change the directory of life’s deck of cards. You eventually run out of cards.

@libertyusa @jenatsky (I thought you may be interested too.)

May I make a suggestion regarding scoliosis? Myofascial release has helped some patients reduce the curvature of scoliosis. It may help some when scoliosis is not hugely distorting the spine. I have heard of a patient able to correct 11 degrees of scoliosis with myofascial release. If there are bone quality issues, that certainly will influence if a person can have spine surgery because hardware needs good bone quality to stay secure. Surgeons are known to ask patients to improve bone quality first by working with an endocrinologist before spine surgery would be offered.

Here is our discussion on Myofascial release where you can learn more about it. There is a provider search at http://mfrtherapists.com/

Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Can I ask, what is “TOPS” surgery ? Have not heard that phrase before….

Thanks

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