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S1 neuropathy - central (very painful!!)

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:30 AM in Chronic Pain
Hi to all

I went off to a persistant pain clinic and the neurologist (whom is now a professor of neurology) has told me that i suffer with neuropathy - sciatica from my damaged nerve.

I never thought they would put a title to my pain (but i guess we all think that) and i think ia m glad that i finally understand.

My nerve is damaged and further to my foot i have peroneal neuropathy too.

I am asking if there are others whom also suffer with this condition and especially feeling the intense pain 7 days a week??

It is horrific at times and absolutely draining and depressing!!

I have been giving a list of things i cant do for the rest of my life (unless i want to experience the pain!!) life i cant pick anything heavier than 7 pounds and im not aloud to bend too much and i have to brace myself each time i cough or sneeze.

Hard to deal with the thought that iw ill have this for the rest of my life.... DOES ANYONE NOW OF ANYTHING I CAN DO OTHER THEN TAKE MEDS?

I am on 20mg oxycontin twice a day and 5mg twice a day with endep 50 at night.

My pain dr said he thinks i should get off the oxycontin but life for me without it IS HELL!! The pain is unreal and there EVERYDAY.

What to do?

Is anyone else suffering with this debilitating condition???



  • The only thing I can think of instead of meds is a neurostimulator which is invasive and would mean another surgery. There are many members who have it implanted and are happy that they went through it. It is not a cure but it's supposed to block pain signals to the brain. Another option is a morphine pain pump which delivers medication straight to the epidural space and it coats the painful areas. Again, it's not a cure but it will reduce or elimination the need for oral medications. This is the same for the neurostimulator as well.

    I'm in the same boat as you with permanent nerve damage on the right S1 nerve and for now I treat it with medication. For the SCS and pump trial, first you'll have to go through a psych evaluation to see if you are well adjusted and can handle having a foreign device implanted in you. Then you go through the trial itself and you have to have a pain reduction of 50% or higher for the insurance company approve this procedure.
  • I have had epidurals that have helped a little of the pain stop but I need to have heat on my leg and foot quite often. I'm also on lyrica and amitriptyline as well as will be trying cymbalta for the nerve pain also. Are you on any nerve pain meds? I would continue to ask your primary Dr for other referrals to other NeuroSurgeons and Orthos who specialze in spinal issues. Tens and other machines that massage have helped me also. Good luck, Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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  • I have severe L5 and S1 neuropathy. The pain is very severe, I was hospitalized 4 times towards the end of last year. After my first L5/S1 herniation about 15 years ago I had an open discectomy which was about 90% succcessful and I didnt need medication afterwards. If a disc is putting pressure on nerves relieving the pressure may be all that helps. You could see a neurosurgeon with a recent MRI. Their are supposed nerve pain meds as well, though Ive tried them all(Lyrica, Neurontin, Tegretol, Cymbalta) at high doses and didnt get any help from them. It may depend on the severity of damage because they have worked for many people. There is also a spinal cord stimulator. I think many doctors probably will not want to keep a patient on narcotic medication especially if it seems that is the only option they seem to want to try.
  • Yes...I too, suffer from neruophaty in both legs and feet. But thare is hope!!
    A SCS implant (spinal cord stimulator) works wonders for nerouphaty. I just had my trial implant and I knew as soon as the stimulator was turned on I HAD to have one!! Instead of pain you tingle! The relief from the constant pain was wonderful!! I am now waiting for the permenent implant which will be in 2 to 3 weeks.(back in pain again ugh) My Doctors waits until the implant site on my spine heals but I want the implant NOW!! It will give me my life back.
    It is not a cure but as close as you will get.It is a trade off of sensations (pain) for another sensation(tingling)
    Go to the top of this page and type scs in the search box and read what others have to say about their stimulator. Some had successes and some did not but for neuropathy the SCS is a life saver.
    Best of luck....I know just what you are suffering. It is constant he#*!! But as I said thare is hope....do not give up.
    A lot of people on here use a "Tens" unit.....I think that is what is is called. Type that into the search box at the top of the page and see if that may help you. I know nothing about them.
    Best of luck dear....you are not alone and trust me.....you will find help just as I did.
    Hugsssssssss >:D< ps Sorry this is so looong.
    Patsy W
    Oops....I forgot to mention Lyric for nerve pain. A lot of people on here swaer by it. Talk to your Dr. about giving it a try. It may take a while to start working. I tried it but had a bad reaction( I have a lot of trouble wirh medicines) My list of what I can't take is much longer than what I can take.LOL
    As I have said over and over.....do not give up!! Read everything you can on this site and you will find a lot of very good information.
    Another hug....
  • the best tablet for nerve pain is gabapentin but it has side effects like weight gain and water retention .but you can increase your oxycodone {with your doctors permission!!!!} and you could try the acticare unit .its a high end TENS and external SCS see www.acticare.com for more info .i do feel for you as i had really bad nerve pain before my last operation .now i have back ache and some nerve pain ..but its no where as bad as it was .
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  • I too am in pain. I'm new here. I haven't been diagnosed with spinal stenosis but have had all the symptoms since before 2000. It was in 2000 I suffered nerve damage to my left thigh. It was so bad that I couldn't even let the bed sheet touch it. It's permanent now. I've been on a lot of different medications too. My knees have been hurting for about 2 years too and the peroneal nerves in both knees are bad. MRI's of the knees were done showing there isn't any ligament damage. But recently it's my lower back.

    Has anyone experienced lower back pressure so bad that it feels like it's in your rectum? Sorry for being graphic. I've experienced this off an on. The most recent about 3 wks ago and in the middle of the night. I got up to see if I emptied my bladder I would get some relief but to my surprise I wasn't able to, and had no feeling either. This was new to me and scared me a little so I called my GP and she said it was the sacral nerve in L4L5 area (where my disks are bad ect.) The MRI didn't show any "new" damage to the L4L5, spinal stenosis, or bone spears since the 2007 MRI. But I have been have so many new symptoms. Anyway my Dr. appointment w/my Neuro. is in a day and I'll find out more.

    Thanks for the sound off forum, we are invisible suffers.

  • My neuropathy stems from an operation i had 3 and a half years ago. I had 3/4 of my right L5/S1 disc removed as it had caused my WHOLE leg to go numb and the drs said if i didn't have it done my brain would syop receiving messages and eventually stop blood flow to it... VERY SCARY TIME!!

    The op relieved my pain and i gained 95% of my feeling back just except in my ankle and big toe. The neuropathy has set in as of around 14mths ago when i started to get increasingly severe pain triggered by the effected area of my spine..

    I am in Australia and the government has recently cut back on the scs fund (they call it the dorsal column stimulator here). So i don't think i would fit the requirement now as you have to be over 50 years old and i am 29 (30 in 10 days).

    Really sucks!! I have not tried the nerve drugs yet..

    The oxycontin work quite well only sometimes i get a really bad sharp tinge but i feel like i am so use to it now!!

    Neuropathy is a really bad pain that just sometimes doesn't let off no matter how hard i try to rest or massage, it's really quite amazing (not in a good way at all) that such a little nerve can cause so much damage and horrid pain!!!

    Anyone feel free to leave a note because hearing other stories really does help in little ways, it's like a type of venting.

    Love to all x
  • Yes yes yes yes - yes to everything. Yes, nerve pain is one of the most horrid, insidious pains. It's not muscular, although muscle cramps exascerbate it. The day I was told I had permanent S1 damage, I was told to get the SCS - spinal cord stimulator. I was in shock and waited almost a year. A year I spent fully reclined in a chair, because any movement, sitting, walking, you name it, gave me nerve flares I could not handle. Staying fully reclined kept me at a 6+ out of 10 on the pain scale. Meds don't help nerve pain - they just numb your mind, which isn't working too well. Didn't for me, either.

    1.5.09 - my emancipation day. My permanent SCS was installed!! Since then, I've lost 22lbs, I'm out and about, I go to the mall every weekend, I don't stay reclined in the car, I can travel 8 hours and survive.........I could go on and on and on. I still have pain, don't get me wrong, but it is a different pain. I can pick up my remote control and do something about it. If I can't quite knock the pain entirely, I can at least distract my brain with some sort of program. I find the buzzing very comforting and keep my SCS on 24 hours a day. (Seering nerve pain if I turn it off.)

    Radiating nerve pain is THE MOST IDEAL candidate for the SCS. If your doctor hasn't mentioned it, maybe you need a new doctor! I'm shocked, frankly!! It's not a cure all and not everyone is a good candidate, but it does work by blocking the pain from getting to the brain (most, not all, the pain). You will buzz/tingle and have a remote control to control the programs. Some will buzz constant, like buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz. Others are buzz buzz buzz buzz buzz. Still others feel like a jackhammer on concrete hard type buzzing.

    My experience with nerve pain was a 24/7 burning, seering, mind-numbing pain. Pain that never stopped. Just pain that got worse if I moved, but burned still if I stayed reclined 24 hours a day. It is horrible.

    Good luck,

  • oh my goodness, just read what you said about Australia and the SCS fund. I'm horrified for you!! I would be saving up my pennies and going abroad to at least have a trial. There is always a trial, to see if it works and would be worth it for the patient.

    Unbelievable!!! So sorry to hear that.

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