Doc recommends spinal fusion from T12 - S1.

Posted by sassytwo @sassytwo, Dec 2, 2023

66 year old female Considering spinal fusion from T12 - S1 for pain standing and walking. Has anyone had this full lumbar fusion? I am concerned for permanent restrictions or loss of mobility post surgery.

I am active and very social. Looking for what I can expect for future life mobility restrictions as I weigh whether to move forward with this surgery. I would like to hear about your post surgery experiences as I weigh my decision, understanding healing is a very individual experience.

I believe I am at the tipping point and am moving towards surgery, if I can live with the restrictions and if I will be able to acclimate to my body new abilities and be active WITHOUT pain.

Prior Micro discectomy L2 - L3 in 2015.

Pain again about 2018 and has progressed to not being able to stand more than 20-30 minutes nor walk more than a mile. Significant pain when I do either of these things....cooking....walking to an event....putting on make up.

Once I sit, fortunately the pain lessens and eventually goes away. I can sit hours mostly pain free and laying down and sleep without pain.

I had to use a wheel chair to tour a museum with friends and find I am not doing things I want to do to avoid hurting which indicated to me that I should stop kicking the can down the road and consider more surgery.

I was surprised with this full lumbar fusion recommendation and did not realize how restrictive my life will be permanently. I am confident in my surgeon and do not feel pressure to move forward with surgery.

I bicycle 60 miles a week pain free (sitting) and it is my go to escape and exercise. I will be most unhappy if I am not able to bike. Anyone a biker

I am a massage therapist and I have stepped away from work except one worksite client. I golf and exercise and am social. Travel and site seeing is painful, but I do it anyway.

Any new treatments on the horizon? Concerns if I wait to have surgery?

My MRI reports.
1. Progressive moderate levorotoscscoliosis centered at L2, which measures 30 degrees and previously 18 degrees in 2015.
2. Progressive degenerative disc disease in the right half of L2/L3 disc space.
3.At L2/L3, previously noted right parcentral/posterolateral disc herniation has been relaced with moderate-sized osteophytic bone ridge which narrows the right lateral recess and results in mild to moderate right foraminals stenosis.
4. At L4/L5 and L5-S1 mild to moderate broad-based left paracentral and Posterolateral disc bulge/herniation relusts in progressive moderate to advanced left foraminal stenosis.
5. L3-L4, mild multifactional central spinal canal stenosis due to posterior disc bulge/herniation, bilateral facet arthropathy, and ligamentum flavum thickening. Mild-to-moderate right foraminal stenosis. This has progressed.

Thanks in advance for any information you are able to share. Tamra

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jenatsky | @jenatsky | Nov 29, 2024

In reply to @gregda "@gliebisch01 @sassytwo @jenniferhunter Survivors! I've had the L1-5 fused & caged 13 mos back. Now the..." + (show)

@gregda Jennifer Hunter’s advice is right on mark. Also Medicare will cover second opinions without hesitation. Although Mayo is one organization the many states they have centers in have differing insurance rules for non-Medicare folks. For us with traditional Medicare there are few limitations.

rwdixon4 | @rwdixon4 | Sep 29 7:51pm

sassytwo, this was Dec 2, 2023 where are you at now ?

I was just talking to Dr McClendon and he said I need a T4 to L4 L5 full open fusion possibly a vertebral resection wont know until he's in there doing it ? I'm 69 now and very active I want to go to Italy & Spain but would rather go without pain. Local trips N Calif fly fishing but cant stand for any length of time? I could ride my Harley and be more comfortable on it then at my home! Don't know if I should just move forward with it or do it little by little ?

ardenhills1 | @ardenhills1 | Nov 17 7:00pm

I have had 2 spinal fusion’s. My L5-L2. With each fusion my back lasted 2 years. Now I might have to have 3rd fusion. I still would highly recommend it! It has given me 4 more years of being able to move and walk. I’m only 50. I have scoliosis that doesn’t help.

sherrym25 | @sherrym25 | Nov 18 8:33am

In reply to @rwdixon4 "sassytwo, this was Dec 2, 2023 where are you at now ? I was just talking..." + (show)

@rwdixon4 Hey Bob, @sassytwo did have her surgery this past spring. She has posted quite a bit about it.
Have you scheduled surgery yet?
Best, Sherry

sassytwo | @sassytwo | Nov 18 10:43am

Hi
I get a tad confused with the strings of these posts. Sorry!

I had my surgery February 4th 2025. I am dealing with some issues on my right pelvic/ hip area and working with a pelvic floor myofacial therapist— confident we can resolve this over time.

That said, life is good and often pain free! I can stand for hours… I can walk miles! I can travel and site see. I am working in a physical job as a massage therapist and esthetician. (just one day a week as semi retired)

I am spend 30 minutes plus daily on my special pelvic core area and myofacial stretching and walk daily.
Oh my goodness , thrilled to be far enough along in the healing process to slowly stretch with careful bends and twists. It is heaven and is helping to give me back my mobility and more freedom of movement.

Breaking up the scar tissue with a 4” ball. Try the website http://www.essentrics.com and the facial stretching programs when far enough along in your recovery. So beneficial!

I have my difficult days still and still feel my back cagey feeling and stiffness — but it nothing compared to pre surgery!

Share to offer hope!

Also, I just learned of another tool that may be useful for some to check out. I am in contact with a woman from a facebook spine support group and she still needs help standing and walking post spine fusion. She has found a new device very helpful. She can garden etc. with the help of the Her docs says she should continue to strengthen for2/3 years. Hypershell exoskeleton. She said it is a game changer!!

Sorry I struggle to be concise:)
Tam

rwdixon4 | @rwdixon4 | Nov 18 12:53pm

In reply to @ardenhills1 "I have had 2 spinal fusion’s. My L5-L2. With each fusion my back lasted 2 years...." + (show)

Hi @ardenhills1 is that the A. H. off F.O. Blvd ~ went to Rio ~ scoliosis 2

ardenhills1 | @ardenhills1 | Nov 18 1:05pm

In reply to @sherrym25 "@rwdixon4 Hey Bob, @sassytwo did have her surgery this past spring. She has posted quite a..." + (show)

@sherrym25 not yet, waiting for them to call me back

ardeecor | @ardeecor | Nov 18 1:32pm

In reply to @jenniferhunter "@sassytwo While I admire your determination to continue in your lifestyle and activities, your MRI report..." + (show)

@jenniferhunter

@sassytwo While I admire your determination to continue in your lifestyle and activities, your MRI report seems to be an indicator on what is to come in your future if you avoid surgery. It is telling you how fast things have changed since the last 8 years. Levo roto scoliosis means that your spine is twisting to the left and rotating centered at L2, and this has increased by 12 degrees in the last 8 years to 30 degrees. Looking forward, if this trend continues, the question is how much more will the spine rotate and what internal organs will be affected? Will this contribute to disability? Will it compromise lung function? Are there any other scoliosis curves developing in the thoracic spine to compensate for what is going in the lumbar spine? If the lungs don't move properly, it can trap phlegm and lead to repeated lung infections or pneumonia, and these are concerns that can represent a serious risk in an aging adult. I have had a bit of a problem with proper chest wall movement because I have thoracic outlet syndrome that was restricting one side of my ribcage. I have been working with a physical therapist who is doing myofascial release and getting the muscles around my chest wall to soften and allow my lungs to move better. Over time, we all develop patterns of body tightness. I also have asthma which complicates things, so I worry about lung function and the risks of any type of respiratory infection. I imagine with scoliosis , that can create some unusual tightness patterns.

Have you worked with a physical therapist to try to improve some of the effects of the scoliosis?

From your MRI report, since 2015 after the microdiscectomy, this level has grown bone spurs forming a ridge that is causing stenosis at the nerve roots on the right side. and you also have left nerve root stenosis at L4/5 and L5/S1. The stenosis in the central canal at L3/L4 is also a concern for spinal cord compression and the note says it has progressed.

I presume this progression is in relationship to 2015 when you had the microdiscetomy.

I can imagine how the activities of riding bikes, working as a massage therapist and having to lean over, and twisting to play golf would be activities that would be hard on you physically in this condition. With the spine as a shock absorber to the body, any activity that has a pounding impact like running, hitting bumps on a bike, etc, would be hard on the spine. If you have a multilevel lumbar fusion, I suspect that your doctors would likely advise you not to continue doing activities that jar the spine because it would transfer the forces to the levels above the fused levels. I am a spine surgery patient with a cervical fusion, and I don't want to do anything to jar my spine. I do have a horse that I ride, but he doesn't trot because he is gaited, so that is just a smooth fast walk, and that is all I really do, just walk which is good exercise for core strength to support my spine.

I know this is a hard choice, and getting several different surgical options would be a good idea since this is a very complex problem. A spine deformity expert with experience with scoliosis experience is a good choice for a consult. My spine surgeon, Jeremy Fogelson, at Mayo is a spine deformity expert. There are artificial discs for lumbar spine, but they may be limited to single level replacements. You'll have to ask your surgeons if any are approved for multilevel problems or for a level next to a fusion or scoliosis involvement. This may be why surgeons are recommending a fusion of the entire lumbar area. The scoliosis complicates things too, and perhaps that may indicate a fusion. Surgeons cannot promise to cure pain or that you will be pain free after surgery. Scar tissue can cause pain and lead to body tightness. This can be addressed by myofascial release therapy. One question that comes to my mind is about your prior scar tissue from the microdiscetomy... could that be causing tightness that increases pressure on the spine and influences the scoliosis rotation? It may be worth it to consider if myofascial release could help you. It won't cure the damage that is already there, but it can reduce the extra forces of pressure from tight fascia that are pulling on your body.

Ask the surgeons the difficult questions about what your future abilities may be with their recommended surgery and what would like happen without it. There is a lot to consider. Get as many opinions as you need because you cannot undo a surgery once it is done. Choose your surgeon carefully. Find the very best that you can. They are not all equally skilled and it matters in the outcome from surgery.

Your thoughts?

Jennifer

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@jenniferhunter Wow, are you a doctor? Sure sounds like it! I got some good education reading your very well-written post.

rwdixon4 | @rwdixon4 | Nov 18 1:44pm

In reply to @rwdixon4 "sassytwo, this was Dec 2, 2023 where are you at now ? I was just talking..." + (show)

@rwdixon4 This was not Dec 2, 2023 it was Sept 29 2025 ? ? ? I am now scheduled for Jan 7th at Mayo Phoenix.

Jennifer, Volunteer Mentor | @jenniferhunter | Nov 18 11:25pm

In reply to @ardeecor "@jenniferhunter Wow, are you a doctor? Sure sounds like it! I got some good education reading..." + (show)

@ardeecor That’s quite a compliment! You made me giggle! I didn’t go to medical school, but I was a premed biology major and later changed my mind. I worked in research at a university for a neuroanatomist for a few years. When I became a spine patient, the surgeons I consulted missed my correct diagnosis. I spent 2 years trying to get a surgeon to help me and I was looking up everything on my imaging reports online and watching a lot of videos of spine surgeons presenting cases at conferences so I learned a lot about what they were looking for and the differential diagnosis that could be something else. I was also looking for the next surgeon to consult and reading their papers. That lead me to my correct diagnosis that 5 surgeons missed because I looked up a term in that paper. From my education, I understood most of what I read in research papers and I looked up what I didn’t understand. I was also in physical therapy for my cervical issues and getting direct feedback and discussing it with my PT. I knew when surgeons were dismissing the clues in my symptoms because they didn’t understand why. I was dismissed by 5 surgeons. When I looked up that term, “funicular pain” I found other similar medical cases like mine described as “rare.”

Some of my understanding of medical issues is my science education, also art school and a 3 dimensional understanding of anatomy and caring for aging parents and advocating for their care. I have copies of my imaging and have been able to find the issues with spinal discs and bone spurs. When you scroll through an MRI you are looking at a series of slices of a 3 dimensional image.

It’s all of that and creative out of the box thinking always asking why something happens and its relationship to what I was doing and my body position at the time. I was tracking all of that on body diagrams and drawing my pain pattern. That was enough to scare a surgeon out of helping me because he thought I had an inflammatory problem causing the symptoms. The medical paper with the term was coauthored by a surgeon at Mayo. I knew he would understand that condition and with my request for an appointment, I included a copy of the case reports I found. At last, I found a surgeon who understood my case and I hired him. That’s why I share my story because it is so difficult to be a patient dismissed by medical specialists.

That might be more than you wanted to know. If I had gone into medicine, I probably would have been a surgeon. I forgot to mention the fellowship I received from the American Cancer Society when I was in high school. I studied along with resident doctors in the pathology labs at a hospital for a summer. That let me see actual diseases in organs which was very interesting and learn tissue processing with the electron microscope. That experience led to my lab assistant position later at the university.

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