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Opinions needed, Chronic nerve pain

JohnnyOJJohnnyO Posts: 118
edited 06/11/2012 - 8:19 AM in Chronic Pain
Hi everyone, Im not new member but havent posted here in awhile and forgot and then couldnt figure out my info, so I made a new account. Anyways hopefully some people read some of this atleast and can give me some opinions.

I am in my late 20's and have already had 4 lower back surgery's. My first three surgeries were for herniated and re-herniations to do with my L5/S1 disc which caused pain down my left leg. My first injury caused bad paim down the leg and I was unable to sit. I reovered pretty much 100% after that surgery. My second injury caused pain down the leg and a new nerve pain in my left foot, since that surgery I have always had some permanent nerve damage. My third surgery was a lamenectomy and discectomy which was a success to which I recovered well enough to not need to use pain meds after about 4 weeks.

My latest injury was my first to L4/L5, I had disc material that came out and then went down the spinal canal and settled behind my L5 vertebrae, I was told by my surgeon there was a bulge at L5/S1 as well. I had pain down my leg and especially in my foot like I have never had. My entire foot was numb, and had bad nerve pain and also shooting pains in the foot and the big toe and also the lower leg. All my toes hurt. I had surgery for this and my surgeon, a good one from a top hospital who did a great job on my third surgery decided that L4/L5 had to be taken care of but that he was worried about going into L5/S1 again as there was a lot of scar tissue and he was worried about doing more harm than good to the area.

During surgery he decided to leave L5/S1 alone after taking care of L4/L5, after looking at the MRI he thought it looked like mostly scar tissue, whatever the reason he left it alone. Anyways about 7 weeks out of surgery I have had improvement. I am able to move my big toe and the pain on the top of my foot and big toe is nearly gone, just left with numbness which doesnt bother me. The shooting pains have also gotten much better. The problem is I am having tremendous pain in my small toes and the outside of my foot, the L5/S1 symptoms. It feels like someone is twisting a knife into my pinky and second toe, or sometimes like a file is being scraped against them. I also have burning type nerve pain on the outside of my foot,but most of the unbearable pain is on those toes or on the foot right below where the toes start.

Sometimes I will go 4 or 5 days without noticing much pain and some days, like right now which started on Thursday, Im am in miserable and unbearable pain all day long. I have called the surgeon and he has said that it could take the nerve a long tim to heal, I think he believes the herniation at L4/L5 was causing the L5/S1 pain because the disc material went down far into the spainal canal. Im not so sure though, I think the bulge at L5/S1 could be causing this.

I am on lyrica daily and oxycodone IR, when I called him last time I was in serious pain like this he said to take 10mg OxyIR every 3 hours until the pain feels better,other wise just take it as instructed or not at all if I didnt need it. I also take valium for spasms, but only really need that to help me sleep at night. Its very hard to fall asleep with those nerves even when they are just tingling a bit. Ive actually strongly considered cutting off one of toes it bothered me so much, I dont even feel anything when I stick a knife into my pinky toe.

Today I am in pain and I said screw it and took 20mg OxyIR at one time, and finally some relief, I dont notice the pain as much, its manageable at least. Im wondering if hydrocodone would work better for me, I took that when I broke a leg and I remember it working, but I layed in bed for a couple monthes and it wasnt nerve damage. I took Lorcet 10's every 4 hours for about 4 months.

Im worried this pain may be permanent and I dont know how I can live like this, I wish my surgeon went into L5/S1 and took that bulge out. Ive never been in this bad of shape this far out of surgery. I will have to find something to do if this is permanent. I may have to get referred to pain management, not sure what they would do though. I cant concentrate on even watchign tv when my foot is killing me like this, it really sucks.


  • Sorry to hear about all of your issues, particularly since you are so young. That must be very frustrating! :( I have a lot of pain in my feet so I can totally relate to what you are saying. Sometimes, I can't think of anything else and it's like I have this battle in my head between feeling pain and distracting myself. Back and forth, all day, everyday, sometimes minute to minute. You said it - it sucks!!!

    Try to keep your chin up! :)
  • Hi Johnny -

    I also have L5 / S1 issues (microdiscectomy Jan 2007, re-herniated Dec 07). Have you tried Amitriptyline or Neurontin for the nerve pain? Amitriptyline is for depression and Neurontin for treating seizures, but both have a side effect of easing nerve pain (for some - everyone reacts differently to meds). I started Amitriptyline about a month ago, I was having pockets of time completely pain free, but then I got a massage and it seemed to aggravate everything, now the pain is pretty much back all the time.

    Hydrocodone has also given me relief. Before my discectomy, I had the shooting pain in my calf and my foot was numb, I could not even keep a shoe on my left foot. I was on the maximum dose (even setting my alarm for the middle of the night to keep on the "every six hours" schedule), I don't think I would have gotten thru without it.

    Does your doctor have a nurse practitioner in the office with whom you can discuss meds, and what might be the best options for you? May be faster than trying to get your surgeon to call you back.

    I thought at 36 I was too young for all of this, you are definitely too young!! Best of luck to you.
  • You do need to treat the nerve pain with proper medication. If the Lyrica isn't working then you need to try something different. Unfortunately, the oxy will not take care of it and you risk becoming tolerant, leaving it powerless for the job for which it is intended. I would talk to whoever is handling your meds and tell them what you've told us.

    is it possible that you've somehow injured your foot? Or that, with your spine in it's new position that your foot is trying to get used to walking differently? You didn't say how long it's been since surgery but these are things to think about as well. I've just had a cervical reconstruction and I can feel the difference all the way down my back- my spine was misplaced for so long that my body adapted and now has to adapt back.

    Good luck to you and please let us know how you're doing.

  • dilaurodilauro ConnecticutPosts: 9,827
    Johnny, like the others have mentioned here, dealing with nerve pain is much different than dealing with disc pain.
    I am surprised that the doctor is just giving you the Oxycodone IR for pain. That is normally used as breakthrough pain medication that goes along with some extended relief pain medication such as Oxycontin ER. Normally, the plan would be to take 2 Oyxcontin (10,20,40mg) a day) which is intended to provide pain relief from 8-12 hours on a regular mild basis and then use the Oxycodone IR (5mg) as a 'helper' to get you over the immediate pain edge.

    But when its nerve damage and nerve pain, those medications will just provide you with pain relief, but will not help as much as nerve medications. I am not a big fan of Lyrica, only because of some of the negative side effects I have had (many others in the older forum board also reported this)
    I am taking Neurontin for my nerve pain. Since I have taken this (Started at 300mg a day and now at 1600mg a day), I have been able to reduce my Oxycontin intake from 20mg twice a day to 10mg every other day and hopefully soon to 0.

    I would also suggest that a EMG might be warranted. That should tell you the extend of your nerve damage. If the discs are still pressing on the nerve causing damage you want to have that addressed. The longer a nerve is being damaged, the longer it will take to recover and there is always the potential for permanent damage.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Johnny

    I have found that when a NS decides to leave a level alone like that, especially if a lot of scar tissue has developed, it's generally for the greater good. Not to say that another NS wouldn't just go in and scrape it all out. However given your history of reherniating the disc at L5-S1 that scar tissue may be the only thing keeping the disc intact. At your age, if it were to be removed and you fused at that level, you have the potential to wind up with lots of more serious issues down the road.

    I've had 7 lumbar surgeries and although my lower back feels awesome now, if it weren't for taking Neurontin and Tegretol every day, my legs and feet would hurt due to nerve damage. Very rarely do I have to battle that pain anymore and if I do I can track it back to a specific activity or sleeping through time to take my meds.

    If it is really disturbing you though, ask for a referal to another NS for a second opinion or a Pain Clinic for treatment or as someone else suggested, a neurologist for evaluation and long term care.

  • When I read your message it was like I had written it! It was spooky. I too had a discectomy and lamectomy in L5/S1. I too have the foot pain in the outter portion into the little toe and extending back into my heal. It's numb and at times I have a burning sensation. When it's really bad I have pain in the little toe and a feeling like someone is taking a knife and cutting me with every step that I take. I too had an MRI to see if there was any problem with the foot because I had colapsed to the floor initially and no one thought that I may had damaged the foot. The MRI came out negative. I had an EMG test done 2 times now. I'm on Neurontin and Tramadol. I was on the mega dose of neurontin but I've been able to cut down on it to about half of what I was taking before. The nerve is damaged...plain and simple. And it's going to take a lot of time to heal. I look at my situation this way....I wound up in a wheelchair over the pain in my foot. It was so bad that I couldn't even move the leg without excruciating pain back in October. I was immediately given a tens unit. That helped deal with the pain along with the Neurontin. It wasn't good, but I was able to at least get some sleep. It was stuck to me 24/7. I was so glad when the pain had diminished enough so that I didn't have to wear the tens unit anymore. I then graduated to a cane in December and I started seeing an Accupuncturist/Pain management specialist. I started with injections and I've gotten to a point where I don't walk with a cane or a limp anymore. I still am on the meds but life is better. I've come to a plato now and I haven't really improved in fact last week I got a nerve block and I'm not doing so hot. So the accupuncturist started accupuncture on me today since injections don't seem to make me progress anymore. I had the accupuncture done at 4:00 today and it's now 9 and I'm having some really bad side affects...the nerve has been woken up so to speak and it's angry. But it'll fade and we'll see what the next few sessions bring me. I guess what I'm trying to tell you...is that it's all going to take time. We all wish there was that miracle cure or pill for nerve damage. But there isn't. I was at my deepest darkest point in my life a few months ago but I decided I wasn't going to take it and I took my health management into my own hands and started seeing doctor after doctor till I found one that listened to me. I didn't give up. These doctors now a days don't give a crap about you ...It's just a job to them. Just like any other job there are those that do it well and those that don't. Don't give up....take charge and find one that works with you. Your the customer! I wish you all the best! I know exactly where you're coming from. If you need to talk. Just drop me a line....I wish I had someone to talk to when I was at my darkest point. I didn't find this website till recently. Take care...we're all here for you!
  • Hi Melissa. I am not using Amitriptyline, I may mention that to my NS next time I see him. I have heard about that, maybe it would help, it wouldnt hurt to try it. Me and my surgeon have a good relationship, he calls me back when I call usually the same day, and if not him his Nurse practitioner like you mention, or secretary type person calls me on the same day.

    I am on oxycodone which is similiar to hydrocodone but I think stronger and better working for nerve pain. As far as blocking me from noticing my nerve pain it has worked better than any pain med with the exception of the fentanyl I was given post surgery which made me feel like I could go play a game of basketball hours after surgery. I dont use the oxyIR daily though, only when I have the bad pain like I have the last near week.

    About the age, my first discectomy was when I was 16, and my last three surgeries have been in the last 5 or 6 years(from about 23 to 28 years old) I hopefully will not need anymore, atleast for awhile anyways.
  • Hey Petite, sorry to hear what you are going through. This is my fourth time injuring my L5/S1 nerve, and my first time screwing up my L4/L5. And my L4/L5 is getting better weekly while my L5/S1 I cant even tell if its improving. Im just wondering if I am going to have to be on meds forever. Through my first 3 surgeries I was able to heal well enough to need no medication after only 4 to 8 weeks. We'll just have to wait and see with this one, its not been two month's since surgery so maybe I could get better.
  • Hi Griff. The thing is Im not sure if the Lyrica is working or not. My pain is back to a tolerable level today, so I had severe pain from Thursday through Tuesday, nearly a week, that has been the worst bout of bad pain I have had since my surgery almost 8 weeks ago. And now it feels good(its never perfect), and will probably be tolerable for atleast a few days before I have another flair up. I have not injured my foot, it is all related to the lower back and irritation to the nerves starting there. We'll see how long I go before another go with breakthrough pain.

    As far as becoming tolerant to Oxy you are right. When my pain level went up on Thursday I started the 10mg's which worked ok but by the time it was Sunday I needed 15 or 20mg's atleast to get the same relief, 10mg's did nothing. The tolerance to oxy builds super quickly.
  • Hi Ron. I have not had any side's with the lyrica with the exception of maybe some drowsiness, so it has not bothered me. My NS mentioned neurontin at one time when we were talking but decided to prescribe lyrica. He has never mentioned taking OxyER, just the 10mg of OxyIR when I am having pain problems, and Valium for sleeping and spasms. I may mention the ER to him. I had a EMG before my surgery, I know many of the nerves tested had no response, I read the report but dont remember everything. My nerves are improving in some areas, I can move my big toe pretty well and dont have any pain there, when before I couldnt even move it, the nerves there just didnt work. Also the top of my foot is just slightly numb now and the shooting pains are almost gone. The breakthrough pain I have is all just the outside of my foot now.
  • Hi C. I agree with you about my NS leaving the level alone, especially since I really trust my NS. When I am in bad pain I get upset and wish he went in there, and then days like today where I dont feel so bad I feel he did the right thing, oh well. This is my second surgery with him and my last surgery was my worst injury and after surgery I improved probably around 90%, enough to need no medications after about 6 weeks. I have had 2 other neurosurgeons and neither I feel are as smart, caring, or good as my current, I do not want to work with another NS. And also he has refused to do fusions on me because of my age.

    As far as a pain clinic. My NS has told me if thats what I want he would refer me, but I have decided to just keep working with him. He thinks that it will get better but could take even up to a year. At the 6 month mark if it is still as bad as now at that nerve I will probably go to pain management.
  • i had adr l4-l5 and its has been 2 years since surgery and i am at a managable ( not pain free ) level. I have nerve damage that i take lyrica, ultram er, cymbalta for. I found that the lidoderm patches applied right over my nerve pain in my leg really help calm it down when it is bad. No side effects so far so ask your doc about it. good luck -chelle
  • I have severe nerve damage in my legs. Eight years ago I was diagnosed with Non Tropical Celiac Sprue. At the time of diagnosis, I could barely walk and could not flex my feet or toes. It took six months to notice any healing. I started to forget one of my canes and my walker started collecting dust in the corner. It was another three months before I noticed any real improvement in pain.

    I still have pain after eight years of recovery. But I spent nearly 50 years struggling with this disease "extermely rare" and misdiagnosed me.

    Don't give up too soon. Do agressivly treat your post op pain!!! Being in pain after surgery does slow down healing.
  • I know this sounds funky but it really really works:
    Please try Orajel on areas of PAIN. It acts as a pain
    BLOCKer. SO COOL! Simple and will not interfere
    other medications. I am not selling anything I have really
    bad pain and know this works when applied correctly. I have
    a good friend a GP and in his practice he has tried it with
    some good outcomes. My mother-In-law is using it on her arthritis now
    and loves it. My gift to you.
    The Don of the OC.
  • Duplicate post removed by moderator paulgla.
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