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L5-S1 surgeries, nerve pain - saying hello!

cherish22ccherish22 Posts: 706
edited 06/11/2012 - 7:24 AM in New Member Introductions
Hi all,

I am 42 and started having L5-S1 problems in 2005. I had 3 surgeries in 2006 and am now considered "stable" with a 360 PLIF fusion with rods, cages and BMP. However, I have ongoing permanent nerve damage of the S1 nerve. This gives me 24/7 burning nerve pain, usually around a 6-7 on the pain scale on an average day. :S

We recently moved, which meant I had to start all over with doctors. I just had my psych evaluation and will find out if I am approved next week. If so, we will move forward with the trial of the ANS (last I heard.)

As it is now, I must stay reclined the majority of the day, as sitting triggers the S1 nerve. I can sit or stand usually no longer than 20 to 30 minutes or so at a time without reclining. Going to church is a killer, yet I try. Riding in the car for any length of time really increases my anxiety, as I know what it will take to recover from that pain flare. Our extended family lives 8 hours away, and holiday trips are fast approaching.

My best friend is my computer, as I find distraction is my greatest weapon (along with the meds.) I have trouble sleeping at night because once it is quiet, the pain is just magnified. I have a laptop caddy on wheels that pulls right up to me as I am stay fully reclined in my recliner and easily pushes out of the way when I need to get up.

I have a great husband and 2 teenage boys who really do their best to make my life as comfortable as possible. I am truly blessed in that regard.

Having been a member of other boards, I know how much online support can mean to me, as a chronic pain sufferer. Sharing our ups and downs with friends who understand - nothing is better than that. I've enjoyed reading so many threads already and look forward to getting to know everyone.




  • I am so glad that you have found us and you will find lots of friendly supportive members here that really do care about each other. Sorry that you are in so much pain but glad to have you here. Have you tried any of the nerve pain meds? Good luck to uou and please keep us posted.
  • Welcome to spine-health....
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  • Yes, I am on meds. Currently 30 mg of a longacting med, breakthrough meds, and muscle relaxers when needed. Also have sleep aids when I cannot sleep (which is almost every night when the pain is flaring.) I've had several med adjustments in the last few months, and it has really started to help, and I am very thankful for that.
  • :) hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i am sorry you have permanent nerve damage. if you are up at night drop by the "Sleeping Problems" forum I) and say "Hello!" you will find others there who are up like you. i look forward to getting to know you. good luck in your pain treatment. Jenny :)
  • Hi,
    Where is your pain residing? In your back or foot? Mine is in my foot and yet they are in the process of finding that some is coming from the back L5/S1 nerve roots and other is actually coming from stuff in my ankle. Tarsal Tunnel and torn ligaments. I would love to hear more.
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  • For me, the EMG results showed acute and chronic S1 nerve damage. My pain starts in my left buttock and radiates down the back of my leg to my foot. On really bad days, pain shoots down my leg and out my foot, like fire, like being struck by lightening or something. This is the primary reason I don't drive - those shocks could land me in a ditch.

    In general, though, it just have a constant 24 hours a day burning. Meds take the edge off, but I still must stay reclined or have a major flare. The burning will go from burning to "on fire" and the pain becomes very near impossible to deal with (major crying, I hold my breathe and have to struggle to breathe, etc.)

    I will occasionally have back pain if I overdo, but I can lay low and that will subside. I could live with that and learn to adjust. This burning nerve pain is just pretty much indescribable. I have told people that if they were put in my body for even a minute, within the first second they would whip their head around and look for the blowtorch that someone has on the back of my leg, and then they would beg to get the heck out! lol That is what I imagine a non-pain person would describe it as.
  • I am sorry to hear that you are in so much pain :''( :''( .
    That is not fun at all!! You are so lucky to have a good family that help you out. I would never want anyone to go through the pain we all go through daily :(
  • pain and especially the shooting pain that keeps you from driving. I have seen a podiatrist which has put me on a combination of meds that has given me some relief at times from the foot pain. The first time in two years. I just got the results of another MRI and it mentioned the S1 nerve root is compressed still. I really don't think my surgeon will agree or do anything about it. He didn't want to go in the last time but even though I lost more foot and gained more pain in the foot, my butt and hip pain are gone.
    I hurt my other knee the other week while trying to walk up steps and to tell you that it hurts more than my foot should tell you a lot. I had to try and get back into my house on a foot I can't feel and a leg with a knee that ended up pretty messed up and still is. It was not a pretty scene.
    I hope you get your SCS trial and that it helps. You did a better job of describing the foot pain than I ever could.
    I have an EMG happening on the non-numb leg in a couple of weeks. They are telling me there is a neurological issue with both legs and I keep telling them the ability to use my bladder and bowels is becoming more difficult too. They just look at me. Is all that normal with you?
    Would love to talk more with you.
  • melinda51mmelinda51 Posts: 4
    edited 05/15/2014 - 5:24 AM
    Cherish22 I am now awaiting my surgery coming up on june 2 2014 for the spinal cord implant and I am wondering how things are going with you know and if it still remains effective. would love to talk to you more about this and so sorry you had to go through this as this is the worst pain and most miserable time of my life. Melinda


  • I'm asking anyone who can help me. I am at my wits end with this sciatic pain. It is the most agonizing pain I have ever had and pain meds are not working so well and I am currently awaiting a spinal Cord Implant surgery. I have had 5 epidural shots and each time they became less effective and the pain just became worse. I am asking anyone who has been through this pain to please help me with any advise that they may have for me. Lots of love out to all of you who have been through this kind of pain. Melinda

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