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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.

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Jennifer, Volunteer Mentor | @jenniferhunter | Oct 6, 2024
In reply to @devaallen "Yes, I can barely walk sometimes. I was married about a week ago. Waking up in..." + (show)
Profile picture for devaallen @devaallen

Yes, I can barely walk sometimes. I was married about a week ago. Waking up in so much pain almost derailed my entire life. I was determined to walk on my own with no assistance or cane. I hope you feel better soon.

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@devaallen I just wanted to welcome you to Connect. Congratulations on your marriage.

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devaallen | @devaallen | Oct 6, 2024
In reply to @jenniferhunter "@devaallen I just wanted to welcome you to Connect. Congratulations on your marriage." + (show)
Profile picture for Jennifer, Volunteer Mentor @jenniferhunter

@devaallen I just wanted to welcome you to Connect. Congratulations on your marriage.

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Thank you so much. Have a wonderful weekend.

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devaallen | @devaallen | Oct 6, 2024
In reply to @gotoandrea "Severe spinal stenosis in elderly. Tried hydrocodone, spinal injection and not interested in surgery. Currentky taking..." + (show)
Profile picture for gotoandrea @gotoandrea

Severe spinal stenosis in elderly. Tried hydrocodone, spinal injection and not interested in surgery. Currentky taking a blood thinner for atrial fibrillation. What gives you relief?

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I have had three spinal surgeries. C4-C7, L1-L3 or something like that, and C3-C4. Now, I am being told I need a fourth surgery from C7- T 2. I refused. I am sick to death of all the poking and medication. Now, I am on Morphine 15 mg. To be honest, last night I just wished it would be all over. Then I remembered I was just married on 09/20/24. It would not be fair to my husband, but I wonder, how is this mess fair to me?

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loyal | @loyal | Oct 6, 2024
In reply to @heisenberg34 "I had lower back and buttock pain related to a hard fall on my back. The..." + (show)
Profile picture for heisenberg34 @heisenberg34

I had lower back and buttock pain related to a hard fall on my back. The only thing that helped were meds and a spinal cord stimulator. Got my life back. Was able to go cycling again, work around the ouse, and go walking. Pain reduced by about 70-80%.

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Can you give me more information about the spinal cord stimulator?

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domiha | @domiha | Oct 7, 2024
In reply to @loyal "I have had x-rays and MRIs that confirm that I have severe stenosis in 2 areas...." + (show)
Profile picture for loyal @loyal

I have had x-rays and MRIs that confirm that I have severe stenosis in 2 areas. I am 79. I have had restless leg syndrome since I was 18 years old. I had tarsal tunnel surgery in July 2023 and then I had a stroke in December 2023. It my right hand and leg and seemed to keep my leg from recovering. I have numbness in my right leg. My neurologist said that I have lumbar radiculopathy. My physical therapist son and my personal physical therapist and my pain management and also neurologist all think that my back is causing my numbness. I started taking Lyrica in March 2024 -50 mg in am and 50 mg in pm. I gradually have gone off the 50 mg of lyrica in AM and able to cope, but still have trouble at night even though still take 50 mg at night. I am not sure that the lyrica is even helping. I did not like the side effects during the daytime. I feel so much better in the daytime without the lyrica in the morning. I am wondering if the Lyrica is actually causing some numbness along with the numbness from my stenosis. Does it make sense for me to reduce 50 mg to 25mg at night????? I still do my physical therapy exercises. The neurologist does not want me to have steroid injections for my stenosis until after the one year anniversary of my 2024 stroke.
I can no longer take ibuprofen because of my plavix blood thinner. I am afraid to take a muscle relaxer. Soaking in the bathtub helps my leg often to help me sleep. I have on iron and Vitamin C to help my restless leg because my iron was low. I have been using a CPAP machine for 20 years. My sleep apnea number is 6. Both tests have showed that the restless legs was more of a problem.
Any suggestions?

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Hello @loyal Other than restless leg ... and the fact that I'm 73.... our stories are pretty much alike. I recently saw a new NP in a neurosurgeon's office. I will be having more MRIs and X-Rays.... but he did prescribe Robaxin, a muscle relaxer I had never heard of, to be taken three times a day. After just a few days, I've been surprised at the difference. Not a miracle.... but less muscle and nerve pain than before. I really didn't want to take a muscle relaxant, as I have used Flexaril and it makes me groggy all day. But they told me this one would cause less grogginess... and so far that seems to be true. Just sharing for what it's worth. Different people react differently to different things... and I can't say this would have the same effect for you. But perhaps something to ask your doctor about. I, too, take Eliquis for AFib. Lyrica helped me gain 35 pounds before I stopped it. Gabapentin made me loopy. So I no longer take those. You've found a great spot for information here at Connect. I hope you find something that helps! Best wishes! Mike

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margaret7 | @margaret7 | Oct 7, 2024
In reply to @devaallen "Yes, I can barely walk sometimes. I was married about a week ago. Waking up in..." + (show)
Profile picture for devaallen @devaallen

Yes, I can barely walk sometimes. I was married about a week ago. Waking up in so much pain almost derailed my entire life. I was determined to walk on my own with no assistance or cane. I hope you feel better soon.

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Congratulations on your marriage. Welcome!

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loyal | @loyal | Oct 7, 2024
In reply to @domiha "Hello @loyal Other than restless leg ... and the fact that I'm 73.... our stories are..." + (show)
Profile picture for domiha @domiha

Hello @loyal Other than restless leg ... and the fact that I'm 73.... our stories are pretty much alike. I recently saw a new NP in a neurosurgeon's office. I will be having more MRIs and X-Rays.... but he did prescribe Robaxin, a muscle relaxer I had never heard of, to be taken three times a day. After just a few days, I've been surprised at the difference. Not a miracle.... but less muscle and nerve pain than before. I really didn't want to take a muscle relaxant, as I have used Flexaril and it makes me groggy all day. But they told me this one would cause less grogginess... and so far that seems to be true. Just sharing for what it's worth. Different people react differently to different things... and I can't say this would have the same effect for you. But perhaps something to ask your doctor about. I, too, take Eliquis for AFib. Lyrica helped me gain 35 pounds before I stopped it. Gabapentin made me loopy. So I no longer take those. You've found a great spot for information here at Connect. I hope you find something that helps! Best wishes! Mike

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Thank you so much. I took only 25mg of Lyrica at bedtime last night and did ok. Hopefully, I can get off Lyrica soon and then I will consider Robaxin. I did gain weight while on Lyrica. I started it in March. I did get so much help from this Mayo Clinic Connect support group during the 13 months I was on prednisone for PMR. The experiences and advice that people gave me about tapering off prednisone was so helpful.

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heisenberg34 | @heisenberg34 | Oct 7, 2024
In reply to @loyal "Can you give me more information about the spinal cord stimulator?" + (show)
Profile picture for loyal @loyal

Can you give me more information about the spinal cord stimulator?

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If you are totally unfamiliar with it(like I was), it is a device that consists of two parts: a lead or paddle, is placed in the space next to your spinal cord(intrathecal space). The other part is the battery(also called the pulse generator). It is implanted in the upper buttock region. The two are connected by wires. The battery sends out electrical impulses to the leads/paddle, that are designed to block pain signals. There is also a remote control that is used to change programs. Different programs are designed to hit different regions of your body with varying amounts of electrical energy. Before you get the full implant, you get a trial version. Temporary leads are placed and connected to a temporary battery that is outside your body usually carried on a belt. You wear the tempopary device for 5-7 days(depending on which SCS you get). The goal is to get at least 50% pain reduction in order to get the permanent implant.

There are a number of companies that make spinal cord stimulators: Medtronics, Boston Scientific, Nevro, and a few others. Do some research to see which one you think might be the best fit for you. Most insurances will cover the cost after you pay whatever deductible you have. Medicare will also cover it. I went wiith Boston Scientific's Alpha Wavewriter. My research gave it the highest rating among all SCSs. There are a multitude of YouTube videos that have been very helpful to me. I wish you much success on you pain journey!

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heisenberg34 | @heisenberg34 | Oct 7, 2024
In reply to @devaallen "I have had three spinal surgeries. C4-C7, L1-L3 or something like that, and C3-C4. Now, I..." + (show)
Profile picture for devaallen @devaallen

I have had three spinal surgeries. C4-C7, L1-L3 or something like that, and C3-C4. Now, I am being told I need a fourth surgery from C7- T 2. I refused. I am sick to death of all the poking and medication. Now, I am on Morphine 15 mg. To be honest, last night I just wished it would be all over. Then I remembered I was just married on 09/20/24. It would not be fair to my husband, but I wonder, how is this mess fair to me?

Jump to this post

Has your doctor ever mentioned a spinal cord stimulator os a morphine pain pump? Both are sort of "last gasp options".

REPLY
Profile picture for devaallen
devaallen | @devaallen | Oct 7, 2024
In reply to @gotoandrea "Severe spinal stenosis in elderly. Tried hydrocodone, spinal injection and not interested in surgery. Currentky taking..." + (show)
Profile picture for gotoandrea @gotoandrea

Severe spinal stenosis in elderly. Tried hydrocodone, spinal injection and not interested in surgery. Currentky taking a blood thinner for atrial fibrillation. What gives you relief?

Jump to this post

Pain stimulator has been mentioned. I refuse. I don’t want any type of cutting on my body. I am on morphine but not the pump. If it involves cutting I am not doing it. Thank you for asking. Have a wonderful day.

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