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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@jenniferhunter

@celia16 I have done a lot of myofascial release for several years. It helps problems that are caused by overly tight fascia and scar tissue and I have benefited from it. It doesn't fix scoliosis, but I have known patients with scoliosis who felt better doing this. I am a cervical spine surgery patient.

Usually scoliosis surgery is an instrumented fusion where rods are placed on each side of the spine and screwed to the vertebrae. It can be a big surgery and long recovery time. Some of the issues with severe scoliosis can be pressure on the heart or lungs that interferes with functions. My surgeon at Mayo is a deformity expert and does scoliosis surgeries.

You may find this discussion helpful.

Spine Health - "Severe scoliosis"
https://connect.mayoclinic.org/discussion/severe-scoliosis-1/

I think speaking with a counselor may help in addressing the fear. I know this is a big surgery and it is hard to confront fear. I went through that too even though my surgery was a single level fusion.

Jennifer

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Man, that link has a patient that sounds very much like my SIL. I will refer her. Thanks for the info.

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@gliebisch01

@sassytwo and @jenniferhunter I am in an almost identical situation as you. I was amazed at the similarity. I am 73, male, had L5 S1 fusion 18 months ago, successful, and I resumed normal activity after. Now I am facing L5-T11 multi level fusion. Can't remain standing more than 15 minutes, at most. Like you, pain goes away when sitting. My surgeon is said to be among the best in the area, but will seek out 2nd opinion. Since surgery will not be until February, I am returning to my pain management doctor for epidural injection which has helped me in the past, to get some relief in the interim. Insurance co also wants me to do 6 wks PT, which I think is a waste of time. If I could just get epidurals every few months, I could live with it, but insurance companies limit to no more than 3 per year, and it's always an unknown how long relief will last after each shot. My wife says all this would do is delay the inevitable (surgery), making recovery more difficult as I age further. For other professionals viewing this post, here are some extractions from top of my most recent MRI:
1. Left paracentral disc extrusion at L1-2 demonstrating superior migration severely effacing the left lateral recess.
2. Right paracentral disc extrusion at L1-2 demonstrating inferior migration contributing to moderate spinal canal stenosis. Concomitant disc bulge, facet arthropathy and thickening of the ligamentum flavum. Moderate left neural foraminal narrowing is present as well.
3. Right foraminal disc extrusion at L3-4 superimposed on a posterior disc osteophyte complex resulting in severe right foraminal narrowing. Moderate left neural foraminal narrowing present.
4. Severe bilateral neural foraminal narrowing at L4-5.
5. Moderate right neural foraminal narrowing at L5-S1.'
6. Severe left and moderate right Neural foraminal narrowing at L2-3.
Although I am not a doctor, I can at least glean from this top summary that there appears to be issues at each of the L levels. I feel like if I I knew about the potential for further deterioration after my first surgery, I would not have reengaged in "all back to normal activity" in the absence of pain.

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Did you have the fusion?

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@sassytwo

Did you have the fusion?

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No, my pain was from a ruptured L1-L2 disc and it went away in about 8 weeks. My 2nd opinion surgeon recommended against any surgery and suggested let your pain level be your guide on any decision to undergo surgery. So with only a pain level of occasional 1 or 2 on a scale of 10, I am just doing exercises to keep my back healthy and avoiding triggers that would aggravate my recent disc rupture.

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@gliebisch01

No, my pain was from a ruptured L1-L2 disc and it went away in about 8 weeks. My 2nd opinion surgeon recommended against any surgery and suggested let your pain level be your guide on any decision to undergo surgery. So with only a pain level of occasional 1 or 2 on a scale of 10, I am just doing exercises to keep my back healthy and avoiding triggers that would aggravate my recent disc rupture.

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Excellent. Wish you continued healing!

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I had my fusion L4-S1 in 1988 after a fall from an earthquake while living in California. My only regrets are that my fusion is stainless steel as titanium had not been discovered yet for medical use. After 5 years of disability I was back in the work force again in 1996. Since then I’ve had pain which I expected that is now chronic with other aging ailments of my back. I never mucked around with steroid injections since they hasten bone destruction. Good luck with your journey.

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Hi @sassytwo, you are a dynamo! I have degenerative disc disease and a previous (2011) spinal fusion at L3-5. Unfortunately I also required 2 artificial disc, a cage, and 4 facet screws. The surgery was completely successful but I have had little to no improvement in my low back pain despite the surgery. My outcome may be worse because of the hardware but as you know, it cannot be reversed. Your current mobility sounds great so I would be sure to ask about the worse case scenario.

Unfortunately, when PMR started for me in 2022 (diagnosed in March 2023), I was forced to retire at age 63 just because I could no longer travel, stand to do trainings, walk long distances or provide some of the on site support that my job required. It sounds like our circumstances are vastly different but be sure you have a clear idea of options if the surgery does not improve pain. I have discovered that I have very sensitive nerves and it took almost a year to get them to calm down despite using both an Ortho and Neurologist to perform my surgery. I hope this is helpful info and please know that I will be sending some good wishes and prayers up for your procedure. Blessings! ❤️

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@wisco50

I had some of my lumbar spine fused and decompressed in 2011.
I just had the rest of my lumbar spine decompressed where applicable and fused the remainder of it including S1. So my L spine is fused L1-S1. My neck is partially surgically fused (2011) and now imaging shows the rest has “autofused” itself! 😳 So my body beat the surgeon to it…
I have chronic neck pain. My back feels great. 🤞

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Hello,
It sound like we have some similar issues and would like your input. Is your back still feeling great? I've had a fusion at L3 to L5 for 6 years. It's doing well but problems started at L2,L1 and T12 shortly after that procedure. Had 2 failed laminectomies at T12/L1 in 2019 and 2020. I've seen 4 doctors since and none will do any thing less than an entire lumbar fusion. I'm still working part time and just wondering about how I will be able to get around after such a procedure. I'm also fused from C3 to T1. Thank you for your post.

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@sandiw77

Hi @sassytwo, you are a dynamo! I have degenerative disc disease and a previous (2011) spinal fusion at L3-5. Unfortunately I also required 2 artificial disc, a cage, and 4 facet screws. The surgery was completely successful but I have had little to no improvement in my low back pain despite the surgery. My outcome may be worse because of the hardware but as you know, it cannot be reversed. Your current mobility sounds great so I would be sure to ask about the worse case scenario.

Unfortunately, when PMR started for me in 2022 (diagnosed in March 2023), I was forced to retire at age 63 just because I could no longer travel, stand to do trainings, walk long distances or provide some of the on site support that my job required. It sounds like our circumstances are vastly different but be sure you have a clear idea of options if the surgery does not improve pain. I have discovered that I have very sensitive nerves and it took almost a year to get them to calm down despite using both an Ortho and Neurologist to perform my surgery. I hope this is helpful info and please know that I will be sending some good wishes and prayers up for your procedure. Blessings! ❤️

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Wow...that is my fear is that I will trade one pain for a different pain. I canceled my surgery and will spend some time making sure I am ready to move forward. It would be devastating to not find relief and have a full lumbar fusion.

I am going to wait to make an appointment with my 3rd scoliosis surgeon. Need a doctor break.

I relate to your job loss, as I only work one day a week as standing is painful. However, I am 66, so.....

Thanks for reaching out. I wish you continued healing. As a massage therapist, you might try myofacial release. If nothing else, it will feel like a reprieve and releases all the good endorphins that help with pain.

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@orloffjr

Hello,
It sound like we have some similar issues and would like your input. Is your back still feeling great? I've had a fusion at L3 to L5 for 6 years. It's doing well but problems started at L2,L1 and T12 shortly after that procedure. Had 2 failed laminectomies at T12/L1 in 2019 and 2020. I've seen 4 doctors since and none will do any thing less than an entire lumbar fusion. I'm still working part time and just wondering about how I will be able to get around after such a procedure. I'm also fused from C3 to T1. Thank you for your post.

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Wow.... luckily I have no cervical issues. Yes, I believe each surgery risks further future issues as the spine compensates and adapts.

I have now seen 5 doctors. I have two options as I see it.
1. 2 day surgery. Day 1 cage S1/L5 & L5/L4. The 2nd day, I would address L2/l3 & L3/L4. Thru the side. This would address my scoliosis but not entirely.
2. Fusion from T11 or T12 to S1 thru the back and one surgery.

I will seek another opinion but taking a break for now.
Let me know how you proceed.

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Last March I was fused from my pelvis to T 12 . Rods plates screws bone grafts ect like a science project.
And the grade is an F a big fat one. I spent literally 9 months prior having tests X-rays mri ct scans dexa scan .
Many conversations with the doctor with my husband with family and with myself. If I’d of only listened to myself.
It had been the absolute worst experience of my life. I wouldn’t wish it or recommend it to or for anyone. There are some many other choices out there I only wish I had known that before the 2day surgery that changed my life and me for ever.
Iv become so depressed over this that today I started searching for support groups just to be able to talk to someone else who had gone through this. It is literally killing me day by day.
I realize this all may sound somewhat harsh and I’m sorry if I am scarring anyone I don’t mean to. But I do not recommend this type of surgery at all.
I hope you find your answers and that what ever you chose it all goes amazingly well for you! No one deserves to live like this.

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