Severe spinal stenosis

Posted by katie215 @katie215, Aug 15, 2020

Age 71yo old gal here. L5S1 autofusion, Grace II spondylolisthesis. Severe spinal stenosis complicated by significant impingement L5 nerves, both foramen caused by loss of foramenal height. Extensive spurring. Surgery ruled out due to possible need to refracture autofusion.

Ergo, surviving with opioid "cocktail", gabapentin, +++twisting, burning, stabbing pain, both calves and thighs, 24/7.

Very cooperative helping husband but wearing thin on perseverance here. Cannot imagine another 10+ years of this with a brain that's operating at warp speed.

Perhaps there is someone somewhere sharing these same issues looking at same future.

Interested in more discussions like this? Go to the Spine Health Support Group.

Profile picture for rhh67 @rhh67

I have moderate —severe spinal stenosis at L4L5 and 3-4. If your MRI Shows Ligiments infolding in the spinal canal there is a procedure called Minimally Invasive Lumbar Decompression surgery (MILD) that is done through a small incision in the back. Done if injections, pt etc fall to bring relief. This procedure is FDA approved and deemed safe in a 2010 5 year study done at Cleveland Clinic. Done by Pain doctors or Physical/Rehabilitation specialists.
I went to orthopedic surgeon and neurosurgeon to look at both MRI and Xrays first. I have a slipped disc and wanted reassurance that my spine is not too unstable to have the procedure.There are articles written about MILD—it can work up to 5 years. I’m scheduled for this in May.

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I have the same issue going on. I am scheduled for surgery on Jan 29th for surgery. My L4 is laying on top of L5. Surgeon is going to remove some bone, also doing bone doner, using bone cement to hold them together and screws. My surgery is being done by a NeuroSurgeon. I have been in severe pain for over a year and can hardly walk.
I was living in WV where there is not much medical care that is why mine has gotten so bad. Had to move out of the state to a larger area to get medical care. I advise any one with Spinal Stenosis not to put off treatment as it only gets worse. It does not go away left untreated.

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Profile picture for mick472 @mick472

I was just diagnosed a couple months ago with lumbar spinal stenosis. I have good days and uncomfortable days. I am not in severe pain, but very limited on what I can do so I don't aggravate it. But, I am having a terrible time upon wake up for some reason. I have to hold on to doors, wall whatever, as I can hardly walk. It eventually subsides as I take a anti-inflammatory and hang on in a hot shower for about 20 minutes. Does anyone have this problem or better yet a routine at night to help prevent this in the AM?

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I had a similar problem that developed about the same time that I had my right hip replaced in 2020 and just continued to get worse. I had an SI joint fusion a year ago which helped quite a bit, and now I'm on the generic form of cymbalta and that certainly makes my mornings much better. MRI shows severe disk disease and severe stenosis in two areas of my lumbar spine.

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Profile picture for enowlkr @enowlkr

I had a similar problem that developed about the same time that I had my right hip replaced in 2020 and just continued to get worse. I had an SI joint fusion a year ago which helped quite a bit, and now I'm on the generic form of cymbalta and that certainly makes my mornings much better. MRI shows severe disk disease and severe stenosis in two areas of my lumbar spine.

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@enowlkr and @petermayodoc25 . I would like to welcome both of you to Connect. Your input is certainly valued here.

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Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@mick472 Welcome to Connect. I understand you are trying to live with the condition, but have your doctors who made this diagnosis offered any treatment such as a surgical decompression?

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Yes, gabapentin, naproxen, titanzine, and spine injections steroid something. The medicine works for a minute but my legs hurt constantly.

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Profile picture for mick472 @mick472

I was just diagnosed a couple months ago with lumbar spinal stenosis. I have good days and uncomfortable days. I am not in severe pain, but very limited on what I can do so I don't aggravate it. But, I am having a terrible time upon wake up for some reason. I have to hold on to doors, wall whatever, as I can hardly walk. It eventually subsides as I take a anti-inflammatory and hang on in a hot shower for about 20 minutes. Does anyone have this problem or better yet a routine at night to help prevent this in the AM?

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@enowlkr. Yes, gabapentin, naproxen, titanzine, and spine injections steroid something. The medicine works for a minute but my legs hurt constantly.

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Profile picture for hburley50 @hburley50

Yes, gabapentin, naproxen, titanzine, and spine injections steroid something. The medicine works for a minute but my legs hurt constantly.

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@hburley50 Welcome to Connect. I see you've mentioned a lot of drugs for spine conditions. Would you like to introduce yourself and describe your condition? Have you had spine surgery or would you be a candidate for it? What are your doctors advising?

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Profile picture for mick472 @mick472

I was just diagnosed a couple months ago with lumbar spinal stenosis. I have good days and uncomfortable days. I am not in severe pain, but very limited on what I can do so I don't aggravate it. But, I am having a terrible time upon wake up for some reason. I have to hold on to doors, wall whatever, as I can hardly walk. It eventually subsides as I take a anti-inflammatory and hang on in a hot shower for about 20 minutes. Does anyone have this problem or better yet a routine at night to help prevent this in the AM?

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I’m dealing with spinal stenosis right now. Most recently I had steroid injections for L4, L5 and S1 on my left side for sciatica pain that is debilitating. I don’t like that at all as it took me 10 days after to recover. There has to be a better way to deal with this. I will refuse surgery.

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Profile picture for mick472 @mick472

I was just diagnosed a couple months ago with lumbar spinal stenosis. I have good days and uncomfortable days. I am not in severe pain, but very limited on what I can do so I don't aggravate it. But, I am having a terrible time upon wake up for some reason. I have to hold on to doors, wall whatever, as I can hardly walk. It eventually subsides as I take a anti-inflammatory and hang on in a hot shower for about 20 minutes. Does anyone have this problem or better yet a routine at night to help prevent this in the AM?

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Maybe check into a Spinal Cord Stimulator. My husband has one and it works great to control his back pain. Also, you should not be having pain issues after a steroid injection. Maybe get a nerve block?

Good luck and may God bless you. Back pain is debilitating, I know. I suffered with it to the point I could barely walk, but I had lumbar back surgery and now my back pain is gone.

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Profile picture for mick472 @mick472

I was just diagnosed a couple months ago with lumbar spinal stenosis. I have good days and uncomfortable days. I am not in severe pain, but very limited on what I can do so I don't aggravate it. But, I am having a terrible time upon wake up for some reason. I have to hold on to doors, wall whatever, as I can hardly walk. It eventually subsides as I take a anti-inflammatory and hang on in a hot shower for about 20 minutes. Does anyone have this problem or better yet a routine at night to help prevent this in the AM?

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I've lumbar stenosis with lumbar spondylosis L5 to L1 more so L4 L5 left side ..constant pain bladder issues
I've cervical spondylosis C2 To C7 with boney growths leftside more so servere encroachment of nerves loss of lordis Knackered I am ! Careful of how I move do try stretching twirling ankles walking lopsided leg length discrepancy yes pain off the charts most days ..sleep well it's a novel idea when I get some only to wake with pain & numbness ..but hey I get on best I can Always someone else worse off 🙃

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Profile picture for terrifimmel @terrifimmel

I’m dealing with spinal stenosis right now. Most recently I had steroid injections for L4, L5 and S1 on my left side for sciatica pain that is debilitating. I don’t like that at all as it took me 10 days after to recover. There has to be a better way to deal with this. I will refuse surgery.

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@terrifimmel Welcome to Connect. I had only one spinal injection in my neck and said no more. I preferred to have the surgery to decompress my spinal cord and fix the problem which also kept it from getting worse. I was charting the changes in my symptoms over time, so I knew how fast it was changing, and I didn't want to become disabled if I had a choice to prevent it.

With lumbar spine issues, sometimes there can be overlapping symptoms that are related to pelvic alignment and muscle attachments to the spine. It can be confused for a spine problem, or you could have both issues. It's worth figuring out where the pain is being generated, and I presume that is what your doctors are doing with injections.

You can find several articles at this site. https://mskneurology.com/category/low-back-pelvis/
This article addresses symptoms that masquerade as a spine problem. https://mskneurology.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/

Lumbar spine surgery is a big decision and a more difficult recovery than my cervical surgery. I'm glad I did it, and I got the coordination back in my arms.

I also have to tell you; I was scared of surgery. I worked a lot to overcome that, and it was worth it. It changed my life. I no longer fear a medical diagnosis, but instead, I can embrace it and advocate for myself, choose my future, and I 've learned enough to know if I have a competent doctor on my case.

Is your stenosis mainly in the nerve roots or is it in the central spinal canal? Now that you are past 10 days recovery from the injection, has the injection helped your pain?

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