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If anyone with lumbar stenosis they've had for over 5 years?

Posted by annie1 @annie1, May 22 11:08pm

I'm wondering if it's true that the longer you wait to have fusion the less it can help. My stenosis symptoms started around 2017 and I was still able to walk and not really have that much pain. My symptoms got worse every year until 2024 when I had a laminotomy that failed after 2 months only. After that I interviewed many surgeons but haven't had fusion yet cuz I was traumatized by the first surgery that failed. I had consultation with a surgeon at Mayo this past week and I'm wondering if I should bite the bullet and do it at Mayo but I worry that it's been so long it might not help. I'm going to message the surgeon after memorial Day holiday to get more of a feeling for what he thinks. I've learned that since I've interviewed so many surgeons they can't really always tell and sometimes they really downplay the amount of pain you will have during recovery. I had pretty bad pain recovering from the laminotomy and that's not even as intense a surgery as fusion. Any comments? Thanks everyone

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dsonderhouse | @dsonderhouse | May 25 10:26am
In reply to @annie1 "@ou14mejc What do you go to the ER for, I mean what kind of pain or..." + (show)
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@ou14mejc
What do you go to the ER for, I mean what kind of pain or what happens that you go to the er? I've never gone to the ER even though I have severe throbbing in my calf muscles if I walk too much and walking too much can be just six blocks without sitting. I just don't want to end up worse off even though my life is fairly compromised. So I wouldn't go to the ER cuz I don't know what they could do for me for throbbing calf muscles. I was once given that blister pack or whatever you call it when I was in Europe for a conference and my legs were hurting but it didn't help at all.

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@annie1

My 2 cents start with primary care dr about the calf pain. Maybe there is something that can be uncovered. As far as pain level everyone is different. I have had pain that wakes me up every 2 hours and causes severe blood pressure and pounding. I really recommend first a primary care dr to help isolate with you what your next steps should be.

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ou14mejc | @ou14mejc | May 25 11:12am
In reply to @annie1 "@ou14mejc What do you go to the ER for, I mean what kind of pain or..." + (show)
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@ou14mejc
What do you go to the ER for, I mean what kind of pain or what happens that you go to the er? I've never gone to the ER even though I have severe throbbing in my calf muscles if I walk too much and walking too much can be just six blocks without sitting. I just don't want to end up worse off even though my life is fairly compromised. So I wouldn't go to the ER cuz I don't know what they could do for me for throbbing calf muscles. I was once given that blister pack or whatever you call it when I was in Europe for a conference and my legs were hurting but it didn't help at all.

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@annie1 my stenosis is so severe, sometimes I can’t get out of the chair or sit because it feels like I’m getting shot in the back and thigh. They give me pain meds and a shot to settle down the nerve. It’s just a temporary fix, but I can walk, sit, stand without it.

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marilynoleary292929 | @marilynoleary292929 | May 25 11:27am

My stenosis has been severe for over 20 years. Now with degenerative disc's I have been seeing a pain doctor. The injections no longer work, so I just manage it with hydrocodone-acetamin and yoga stretches. Unfortunately, I haven't figured out what triggers a debilitating episode. Walking used to be my go to exercise, but that seems to aggravate my nerve. I'm looking for an exercise or stretch that might help with this pain

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melij | @melij | May 26 5:12am

Hi @annie1

I had spinal fusion and laminectomy on Feb 3 2026 for spinal stenosis, degenerative disc disease. I also have scoliosis and a host of autoimmune health issues and was taking Targeted Immunotherapy and Chemotherapy at the time of my surgery..My issues started in 2015 and had only gotten worse over time. There was severe pain in my thigh, numbness in toes and I couldn’t straighten up, so walking became limited and my upper body pitched forward all the time.
Post surgery and almost immediately I could walk upright again and have no pain in my leg. While I do have residual numbness of the toes the nerve damage over time has caused this.
Within a couple of days of surgery I was walking, and while it was painful at the time, this was well managed by my care team.
Today I am able to do more than I was able over the last few years, things that were not possible before surgery and feel the outcome was worth the recovery. I was able to do stairs a week post surgery and while I wasn’t dancing the jig right away, my quality of life is so much better for it. I have no pain, I did not do physiotherapy, however I have done yoga on the road to recovery. I sometimes have tenderness in my back, but it doesn’t hold me back in the least.
I wish you the best and hope you find the right path for yourself!

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annie1 | @annie1 | May 26 7:29am
In reply to @melij "Hi @annie1 I had spinal fusion and laminectomy on Feb 3 2026 for spinal stenosis, degenerative..." + (show)
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Hi @annie1

I had spinal fusion and laminectomy on Feb 3 2026 for spinal stenosis, degenerative disc disease. I also have scoliosis and a host of autoimmune health issues and was taking Targeted Immunotherapy and Chemotherapy at the time of my surgery..My issues started in 2015 and had only gotten worse over time. There was severe pain in my thigh, numbness in toes and I couldn’t straighten up, so walking became limited and my upper body pitched forward all the time.
Post surgery and almost immediately I could walk upright again and have no pain in my leg. While I do have residual numbness of the toes the nerve damage over time has caused this.
Within a couple of days of surgery I was walking, and while it was painful at the time, this was well managed by my care team.
Today I am able to do more than I was able over the last few years, things that were not possible before surgery and feel the outcome was worth the recovery. I was able to do stairs a week post surgery and while I wasn’t dancing the jig right away, my quality of life is so much better for it. I have no pain, I did not do physiotherapy, however I have done yoga on the road to recovery. I sometimes have tenderness in my back, but it doesn’t hold me back in the least.
I wish you the best and hope you find the right path for yourself!

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@melij
Where are you located? I had decompression surgery in New York on March 1st 2024 and the aftercare was absolutely horrendous. They really didn't help me much at all. So, where did you go for your surgery? Sounds like you're in Britain?

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melij | @melij | May 26 8:07am
In reply to @annie1 "@melij Where are you located? I had decompression surgery in New York on March 1st 2024..." + (show)
Profile picture for annie1 @annie1

@melij
Where are you located? I had decompression surgery in New York on March 1st 2024 and the aftercare was absolutely horrendous. They really didn't help me much at all. So, where did you go for your surgery? Sounds like you're in Britain?

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@annie1

I actually live in a small town - Collingwood, Ontario, Canada but travelled to Mississauga, Ontario for the surgery. Sorry this probably doesn’t help you much…
I did a lot of research in the surgeon and team before hand which led me to them…

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