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A call to those with long term nerve damage

saltzworksssaltzworks Posts: 1,031
edited 06/11/2012 - 8:39 AM in Back Surgery and Neck Surgery
So - It seems if I've been seeing a lot of questions on nerve damage. I would like to start a thread of all those who:

1- Have permanent nerve damage (it's been a year or more...)
2- Have had long term nerve damage (you had damage, but have seen improvement)
3- Are disabled due to nerve damage

I guess I should ask for help in defining exactly what IS nerve damage - is it...

1- Pain that never goes away (I think most everyone here would qualify for that one!) So is it more than pain?
2- Is it a loss of sensation as in total numnbess (but you can still move the affected limb)
3- Or is it all the way to paralysis (the inabiltiy to move or control your muscles).

From what I understand, numnbess is supposed to be worse than pain. It's like the screaming accident victim vs. the silent one - the one with air in thier lungs is most likely better off than the one who is out cold (or dead).

To those who have long term damage - please answer the following:

1- Do you know what caused the damage?
2- What problems do you face - do you have to use a cane, a walker, a wheelchair, do you have cramps in the damaged limbs? I assume you do therapy? Anything else...?
3- What do the docs say - is there hope?

See - I'm certain there those of us here who have some hairy big-time problems. You know, beyond the pain. Beyond the lead up to surgery and recovery. What happens to those of us with life-changing post-op complications.

I would just like to see some stories. I want to know I'm not alone. I would like to see some hopeful stories too. I would like people asking about permanent nerve damage be able to find a collection of examples.

I'll post this, then I'll post a reply with my story/answers.

and... THANKS! I hope this proves helpful in answering some of the nerve damage questions out there



  • I feel like a broken record - but if you aren't already familiar with my story...

    I had sciatica and CES in my left leg. Excruciating lightning-like pains whenever I moved the 'wrong' way. Sometimes it was accompanied by a loss of continence.

    I had a S1-L4 PLIF with BMP inside and outside the spinal canal in July of 2008. Two rods, 6 screws and assorted pins.

    Post-op I had a LOT of violent nausea. We think I started to hemorhage as a result OR I started having an allergic reaction to the BMP inside the spinal canal,or it was both. In any case - I started to go numb in my right leg. It became a block of ice or wood. No feeling, no sensation. I could still wiggle my toes though.

    I had a second surgery to 'explore'. They removed the BMP from inside the canal and 'cleaned it out so a truck could drive through'.

    The numbness stopped progressing.

    My left leg no longer has sciatica. I no longer have CES. My right leg is still numb in all the spots that went numb over a year ago. But I can move it. I can't go on my tiptoes - it's weaker than my left leg, but it does still work.

    Currently I have severe cramps in the numb parts (the outside half of my right leg). They are so strong that I think I have broken a bone or snapped a ligament in my foot from them. I've got an upcoming apt. with an orthopedic surgeon to figure this out.

    All I get from the Neurosurgeon is that it's still under 2 years. It might still come back.
  • I am in the early stages of nerve damage and still optimistic my issue can be resolved but still trying to decide on procedure to alleviate severe compression on L1-S5 (after micro-discectomy didn't work). I have done a lot of reading and from what I can tell you are not alone but it is hard for other people to understand a disability that can't be seen. So it might seem like you are alone.

    I wish I could offer more but I'm sure others will comment.
  • 1) I have permanent S1 nerve damage and my NS told me that it happened because it was compressed for too long since it took 3 months to even get to a specialist and get an MRI. 3 months later I had a microdiscectomy and when I woke up post op my leg pain was still there. My surgeon at the time, an OS said to give it time since it was irritated and very swollen. Well, only a month went by when I reherniated L4-5. I also developed retrolisthesis at that same level. Another 6 months later I saw an NS and I had a TLIF on L4-S1 and I still continued to have severe pain despite the surgery.

    2) I have nerve pains (burning, crushing, stabbing, aching, electric, pins & needles, and numbness). I also suffer from severe muscle spasms. After my first surgery, the sciatica went over to my left leg when I had symptoms in just my right leg all along. Since then it's been both legs bothering me but the right leg is the worst. I have to use a can all the time because my leg gives out with no warning and of course I also use it because of all the pain. I HATE using walkers.

    3) Nothing can be done according to my doctors. The nerve damage is irreversible. I have a pain pump and they told me that it won't do anything for my nerve damage which causes the weakness. My right calf is smaller than my left due to muscle atrophy. I have heard that it is possible to gain back the lost muscle mass but it won't change the problem.

    I've had this for 3 years and now I also deal with scar tissue growing on the left S1 nerve root and also at the L4-5. That's all folks..
  • I'm hoping (against hope) that none of this is permanent, BUT:

    I am officially a year out from my second surgery (in the space of four days) to repair my back. My surgeon told me yesterday the surgery was to stabilize my spine and minimize my pain, but nothing could take it all away (pain that is). So:

    1. Falling backwards on my lawnmower caused the pain I still have (although it can still climb to a 7 or 8, my pain is greatly diminished from pre-surgery). I do have additional nerve damage (numbness) in my right leg -- particularly the outer part of my lower right leg and my right foot. This was caused by the surgery itself -- the first one -- placing the instrumentation in my back. When I awoke from that first surgery, I remember asking them if they could shift me in the bed because my foot was pressed up against the bed railing. That didn't turn out to be the case -- it was just that the outside of my foot had gone numb, and not from being pressed up against the railing. A year out of surgery, it's still the same.

    2. I am able to walk without a cane, but not very far before I feel my back twisting. Cramps? Can you say being locked in one position for at least five minutes without being able to move a hair while you scream in agony (my animals think I'm insane -- I'm beginning to believe them!)? Most of the cramps I get are not in the numb areas of my legs.

    3. My doc says to give it another year. Feeling in my right leg/foot may return. I'm not sure if the cramps will go away. I am continuing PT -- have gone at least once a week for the past year. In the new year (after we address the lump of knotted muscle in my right hip) we will concentrate on more strengthening exercises. I already do some, but I need to hit this harder.

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I don't know all of my correct medical terms ( sorry ). But yes I have long term nerve damage.
    The most involved damage is my legs won't do what my brain tells them to do. I can't walk up steps or even a curb very easily, as the legs won't lift up to take the step. If I use my cane they listen better. It's so weird ( to me ).

    The "good" news is when this part stopped working the severe sciatic pain always went 100% away :)

    I will take that as a good trade off any day lol

    What caused the nerve damage is the disks were such a mess and slipped all around inside of me that the nerves are like a tangled ball of yarn now - and some of them are dead or dieing...
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I had my 1st surgery in 2007 after putting off surgery for about 4 years. My nerve root was described in my OR report as being "flattened". After a year post op, I still had areas in my lateral calf that was numb and odd numbness in my foot. I had my second surgery to finish what they couldn't do in my first one (for fear of permanent foot drop). I had a 360 revision and added cage w/a pin. They ended up clearing so much bone out of my foramen that they couldn't even put a screw back in that side. Going into it my surgeon warned me that the numbness was going to be worse b/c of the manipulation. It certainly was! I came out of it with the entire lower portion of my leg numb and incontinence (the first day or so after the catheter was taken out). My numbness finally started subsiding at about 4-6 weeks but didn't resolve completely.

    At almost 7 months post op I have the original numbness with added areas of diffuse numbness and a horrific (to me) case of neuropathy. It burns, aches, cramps, and has pins/needles. I can forget ever having a pedicure again b/c they're agonizing. I don't expect it to get better, just based on my previous outcome. I'm actually awake b/c of it now.

    I don't really know what there is to do about it. I take neurontin and muscle relaxants, and that makes it manageable at times. Other than that, it's miserable. I really feel for you and wish I had a brighter solution for all of us!
  • I hate to say this - but I'm grateful that I'm not alone. Not that I would wish this on ANYONE! ...if wishes were horses...

    Meyday - how is your pain pump working? Have you started to gain any control over the pain yet? I've followed your ordeal - it's been quite the adventure for you. I'm always impressed by your attitude.

    I too hate walkers - my dr. wouldn't let me do a cane though, he doesn't like what they do to the spine.

    oh- and yes, I went from my right leg being 1" larger to now beign 1 1/2" smaller than the left.

    Isteller - You reminded me of when I discovered my numbness. I thought the circulation pump things they had on my legs had stopped working on the right side - but nope, it was just me not feeling it anymore.

    And I understand those blinding minutes of cramp-agony!! I shocked my husband 2 days ago by my leaping off the couch in agony - trying to straighten out the leg as we tried to watch a movie - I was laughing and not paying attention when the cramping crept up on me.

    MsHumpty - I used to always say I was grateful for the numbness over pain. Now with the cramps I'm not so sure!

    Alcb - I remember having issues for quite a while after the catheter. SO thankful they were resolved!!

    Oh - and the pedicures! I've given them up too. It's weird, but I still feel ticklish on the bottom of my foot - but I don't FEEL anything - I just get the knee-jerk reaction without feeling the actual tickle.
  • Hello,
    Yes, I have bilateral permanent nerve damage, along with buttocks, genital area, and saddle areas. Mine came about after my first lumbar PLIF-TLIF surgery at L4-5. The problem became the development of post op Cauda Equina Sydrome that went undiagnosed/untreated for months after my surgery, despite my telling my surgeon and my physiatrist that something was horribly wrong. I went into surgery with a partial foot drop of the left foot, woke up with a total foot drop, and went from a patch of numbness over my left calf to complete bilateral numbness. In fact, the pain was so horrific post op that I didn't even notice at first that I couldn't feel anything , like the blankets touching me from my hips down, couldn't feel having to go to the bathroom nor be able to stop or start on my own....but they sent me home a short less than 36 hours post op. I saw the surgeon twice, once when he finally came to see me to tell me how difficult the surgery was and how badly damaged the nerves were at L4-5, but no exam, and the morning he came into tell me that if I could make it up and down the 5stairs. He didn't even stay in the room long enough for me to ask him why I had all of this horrific pain and increased numbness.
    Anyway, the rest is a long story, and I won't bore you with it. I had a salvage operation in Aug. of 2007 to try to stop my ongoing decline. Needless to say, nothing could be done to repair or reduce the damage already done. It's been almost 4 years now and I will never be the person that I was told I would be after the first surgery.
    Yes, I am totally disabled due to the nerve and motor damage that I suffered.
    I used a walker for most of the first two years, and gradually made it to a quad cane, it has 5 legs to keep it steady. I also have both a motorized and manual wheelchair for the bad days, which happen far more often than I care to admit to. I also use a scooter to get around when I need to be to walk for more than 30 feet or so, or be on my feet for more than a few minutes. It is very difficult to stand up, the pain levels increase exponentially, and the burning pain becomes electric and shoots down my legs. I get horrible muscle cramps, which buckle my legs and put me on the floor more often than not.
    I did the rounds of physical therapy several times and got no benefit from it so it has been permanently discarded. Now, it is simply manage the pain levels as much as possible, lyrica for the nerve pain, and muscle relaxants to help with the spasms, but that doesn't seem to help as much as it once did.
  • Before I had a posterial 360* bilevel spinal fusion of the L4th-S1 with the removal of the Lami, and Foreman bones. I had minimal leg pain, alittle in my thigh, and the rest of my pain was muscle in my back. I tryed all conservative methods of treatment, but they weren't working. The ns thought the stabblizing of my spine would help, but he did warned me of my chances of, about 5%, ending up with numbness, paralisis, and nerve damage. At that point I was in enough pain, that the benefits out weighed the cons. Boy could I have not been more wrong!!!

    I woke up from surgery, and the first words out of my mouth were, " I can't feel my legs." My ns looked at me and said," Impossible, you can feel them. I did a EMG!" Well the next morning I think he finally believed me. During the night the nurses tried to get me up walking. I warned them!! I took out 2, and it took 6 to get me up. LOL!! Did I forget to mention that I'm 6'4, and went 225lbs. I took me a month to regain the ablity to walk. My ns basically washed his hands of me after the MRI. All he said was, " I did the surgery right. All the rods, screws, and cages were in the right places, and your starting to fuse."
    It took me awhile, but I found out what was wrong with me. There's a big fancy name, but I forget it. What I have is scar tissue all around my L5, so much scar tissue that they can't get at it with a normal ESI, and I have scar tissue traving down my S1 nerve root. There is nothing they can do to improve my legs. At this point I'm just happy to have gotten use of them back.

    I no longer have back pain, but I swapped it out for nerve pain in both legs. With my right leg being the worst. I have all the symptoms of nerve damge, and nerve pain. I have come to the realization that this is how my life is going to be. I've just started working with a new physiatrist for my pain, and he seems to be helping. In the last month I have experienced the least pain, then I have in years, and I'm still able to think.
    Bobbi Jo
  • in my hands bothers me the most...Numbness and tingling all the time whether theyre warm or cold. Its been a year and a half with no improvement and surgeon says its most likely permanent since it has never gotten an better by now. It was caused from my spinal cord being compressed in my neck to only a third of its normal width for so long before being fixed. I now too am having the same problem with my feet but am hoping it improves. I had two lumbar fusions in the last year and a half. Last but not least I have pain in my legs down the back to my knees which did not go away after my last surgery.

    Oh, as well...I have hyper reflexes do to the damage on my spine.

    Lotsa fun.. >:D<

  • Sandi - yeow! That's a story to scare anyone away from surgery. I'm reading between the lines a little and I am imagining the he** you must go through each day. I can't imagine cramps worse than what I've got, but it sure sounds like you've got'm.

    Bobby Jo - I'm amazed that you are able to walk after that! AND that your NS didn't believe you??!?? I do remember loving my physiatrist. It was him that finally sent me to my NS - I was beyond what he could help.

    Christina - I'm just older than you - with kids just a bit older too. It sucks to have all this stuff happening when I still consider myself to be fairly young - and your's started with getting up after sitting? Yikes. It sounds like you've got a surgeon that is willing to admit that it's permanent. I get the impression mine won't say that until I make him.
  • Yea it is one heck of a story, and I've told it here before, so I won't bore anyone by repeating it. I have something going on with my hips now too, on top of everything else and they think it is bone death or avascular necrosis. It is when the bones die due to a loss of blood supply and I have it in my wrist , probably caused by the cane and walker usage, and steroids they have given me over the last few years....lucky me. If it is in my hips as well as my wrist, they may have to do a hip replacment depending on how severe it is. I am already facing surgery for the wrist...the muscle spasms from my back are horrific but add the hip problems to them and they put me on the floor, literally. I can't hold up my own weight, and can't get my feet onto the floor to stand....and pain....I can't begin to describe it....
    I'm sorry that so many of us find ourselves in this position, one where I'm sure that most of us never expected. I was told that he ( first surgeon) was 99% sure that I was going to feel " so much better after I had surgery done"....either he lied, or we have diametrically opposing views of the definition of "better"...LOL
    Anyway, at least my wheelchair is my favorite color...I got a nice purple one....
  • dilaurodilauro ConnecticutPosts: 9,858
    For some, the class of nerve medications ( Lyrica, Gabetrin, Neurontin) help to manage the pain. Nerve pain is really different from the pain we feel with disc related problems.

    One small example of how nerve pain hits us:

    Sitting in a chair for a while, and then putting your feet up.
    Slowly you start to feel pain legs, hip and potentially your feet. It is so uncomfortable. Standing up does seem to provide some relief.

    I think that the biggest concern with nerve problems is IF they are going to be permanent. The longer you have nerve pain that is being driven my disc the longer the recovery period will be. It is not that uncommon to read about for that period to be over 12 months.

    Then of course, there is the situation with permanent nerve damage.

    Between my third and fourth surgery, I waited a long time before I had the surgery. As a result of that and my prior spinal problems.I didnt get any immediate relief.
    Today, I have a dead foot

    Nerve pain is really difficult to identify and difficult to treat. It is very painful and there are not that many medications to manage it

    Good lucki
    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
  • I'm laying on the couch posting this as my SCS is charging.

    Due to many problems arising after my 2 level lumbar fusion, I'm dealing with permanent(greater than 2 years) bilateral leg pain/numbness/acid dripping down legs/foot on fire/neuroclaudication/bugs crawling on my foot/numbness in the saddle area/stabbing sensation in my hootie and bootie, etc.

    I had nerve roots completely compressed and flattened by boney growth of BMP. I've had way too many salvage surgeries and will always harbor a dormant staph infection in the remaining cages from the first surgery. They like to give it all different names: post laminectomy syndrome, post laminectomy radiculopathy, failed fusion, failed back surgery syndrome(which is a description, not a true diagnosis for reimbursement purposes anyway), RSD, and adhesive arachnoiditis.

    I can no longer function the same way I did. I can no longer perform the job I loved. I am on a bag full of meds. I battle depression(gee, wonder why.) I contend with an employer and former co-workers who don't want to be associated with me anymore. My health insurance is through the facility I work for so my former peers know my business as I have no choice in where to receive medical care. Some of them act like harpies and seem to enjoy the gossip about my current status. I hear the rumors. If I tell my story to people, I get OMG reactions. I don't want to be an OMG poster child for surgery gone wrong.

    But I'm alive. I can do my best to educate people about researching medical problems and share what has worked or not worked for me. I can make friends here with people who don't give a darn what I can or cannot do, they just take me for who I am. I have a future planned out, always got to have somewhat of a plan, and I hope to realize it. I think I can find a different path with the same level of satisfaction I had before this mess.

    So a hopeful story? Now that I've addressed my medical issues as much as I can, I'm ready to get my life back on track. It's a different life than I imagined, but I'm ready. I've learned so much patience from this whole pile of crap that's been shoveled on me that I think I can wait a little longer to get it all together.

  • Yep, forgot to include that in my little tirade about my physician inflicted nerve damage....I found out about that when I had the salvage surgery and only when I asked specifically if I had it or not. The 2nd surgeon let is slip that yep, there it is and it is not good.
    That particular condition causes its very own set of neurological problems and pains.
  • I am only about 3 months post op, but have nerve damage.Symptoms are much worse then pre-op and have been since the day after surgery.

    Doc said there was a nerve crushed between the bone and scar tissue he had to pick away from both. He did a F/U CT Myelogram last week and said there is a bone spur that may be causing my nerve pain.

    My left big toe is completely numb, other toes have partial numbness. I have numbness across my foot where the foot meets the toes and where the foot meets the ankle, and from that area to the big toe. I also have partial numbness on the outter calf of the left leg. (i cannot feel the touch on the skin but can feel pressure inside. feels like it is padded)

    I use a walker unless I am going further then around the block, then I have a motorized wheelchair as my left leg/foot is very weak and unstable.
    I was told in PT I technically have foot drop, but it does not always drop, however I cannot lift it up from the flat position or stand on my toes or heals.

    My meds keep most of my pain under control but I still get "jolts" of pain anywhere from the hip to the toes and suffer if I do "to much". Most of my symptoms are on the left but I am beginning to have symptoms on the right (vey frightening).

    My doc is doing an exploratory / bone spur removal surgery this comming Friday. I am still hopefull that my damage can be reversed or "cured".

    If not I have come to terms with the fact that I may be permanantly disabled. My long term disablillity has been approved and they will assist with SSDI if it goes long enough.Truth be told, I am nervous about the surgery on Friday, afraid he will somehow do more damage, that would be hard to handle, but with the possibility things will get better, I think it is a chance I have to take once.

    Anyone with experiennce with exploratory surgey please advise/inform me of the outcome.
    Everyone please keep posting and praying,
    God bless and keep you,
  • This topic is so terrifying and yet I have never been able to get any of my various spinal doctors to talk about it with me. At my last appointment when I was getting a nerve block, I told the nurses and technicians that were chatting with me that I was very afraid of arachnoiditis and all I got were very blank looks. To a person no one had even heard of it before. And I've never gotten much more reaction from any of my surgeons or pain management docs. They just brush it off and tell you not to worry about it...just like your article stated.

    I read through the link you posted and congratulate you on the work you are trying to do to get the word out....but I'm not sure how one weighs the information. When a patient is in terrible pain, and there don't appear to be any options, one tends to go for the procedure or surgery that the doctor one trusts recommends. It is a conundrum.

    On a slightly different topic, just in the past week I have noticed several ads for class action lawsuits looking for people who have had bad results with the gadolinium that is injected during MRI "with contrast."

    None of this is very reassuring for those of us scheduled for spine surgery in the near future....


  • Wow. Scary.

    Sandi -that really sucks - the bone issues. I've never of it, but then what I know medically fits in a very small bucket. I'll have to go find your story - I've only seen parts.

    PapaRon - I know - the IF factor! My NS is still not willing to say anything is permanent. He used to tell me a year, now it's wait for 2.

    ErNurse - I have followed your story and I'm just amazed at how wrong things can go. I also get a lot of 'if something's gonna go wrong, it'll be Amy' Not that I've had a lot go wrong, but just enough to make my co-workers always count on it. Your history is so much MORE, and you co-workers are your health care professionals too - talk about a whammy dose of people knowing your business. I applaud you moving forward.

    MammaTia - That padded feeling - YES, that's exactly what my leg feels like. I can't feel touch to the skin, it feels padded. Funny, but Lyrica makes my whole body feel encased in cotton - all execpt the hot points. I only took it for 2 weeks - it was too much for me to handle.

    Arach - Did I say scary already???!!! Makes me freak! I'm going to go follow your links and read up on this. I've never heard of it before. Did I say scary??!!!

    Gwennie - good catch on the gadolinium. With the hardware in me, contrast MRI's are my only option anymore. One more reason to get my hardware out I guess.
  • I haven't noticed much of a difference yet with the pain pump since I'm at a very low dose still. I still have to take my ER and IR meds, as well as the others too. When the weather changed last week, I was in such horrible pain and none of the meds helped during that time. So I guess I'm far from out of the woods. I keep having lower back, hips, and leg pains and constant burning from my right hip. Sitting is a pain, it doesn't take long for my legs to hurt when I'm up and around, and long distances are out of the questions. If there isn't a scooter or walker if I go to a dept store, then it's a no go.

    I'm still waiting for better days.
  • Going on 3+ years now and it isn't fun.

    1. Cause? Delayed medical treatment for 4 months? Even after the first surgery (had 3 in 12 months), the nerve pain never went away. First doc reported a massively crushed nerve.

    2. I have a walker I don't use much and a cane I use frequently (does chasing wayward teenage boys with it count? lol) I have to wear "safe" shoes due to balance issues (discussed more below.) I am 43 yet have a handicap placard for my car because walking any distance on uneven pavement is very dangerous for me. Hubby rarely lets me go anywhere alone and I rarely drive. When you can't really feel your feet, I don't think it is prudent to drive too much.

    Mine is 24/7 burning/searing but I have to say the SCS (spinal cord stimulator) helps tremendously.

    I have severe numbness laterally from hips to toes and my balance is terrible. I fall easily and that leaves me terrified, because one more fall might just the one that finishes me off, ya know?

    I have to be careful shaving my legs because I can cut myself really deeply and not know it until I see a trail of blood and realize it is coming from me. Same with self-pedicures, which I rarely do since I can't bend, lift or twist and that is just too difficult. (I shave by leaning up against the shower, and raising my leg up to my hand.)

    I get what I call "lightning strikes" of shooting pain from hip to toes occasionally, and when I get one, I will get many, usually for hours or days. And then sometimes I go weeks without them.

    Fortunately, my hootie and bootie are doing fairly well, although my bladder is "flaccid", which means it doesn't do a darn thing. I have to take a deep breath and "bear down" to urinate at all, and am forced to take a prophylactic antibiotic daily or get UTI's due to incomplete or stagnant urine. Urologist says I am far from needing to self-cath, for which I am very thankful.

    As I said, I cannot bend, lift or twist and my life is greatly limited. I have grippers all over the house and without them, I wouldn't be able to do the very little housework and laundry that I do accomplish.

    I spend much time reclined as this still helps to decrease my overall pain, although with the SCS, I can get up and go do things without the previous 20 minute window from bad pain to nightmare pain. That buzzing of the SCS is really a God send for me.

    3. No hope, unless a miraculous healing from God. I was told SCS or implanted pain pump if the SCS did not work. Thank goodness it did enough to give me most of my life back (but obviously, not what a "normal" person would call most of their life back! But enough to be thrilled for the opportunity for the SCS.) My remote control (for SCS) is my new best friend, truly.

    I am a strong believer in mind over matter, what we focus on expands, what we believe will be. Nutrition, anti-inflammatory diet and supplements, meditation, biofeedback, and find that distraction is still my greatest weapon. I will NEVER give up hope, never stop trying. I also believe our body bears the burdens - and everything that entails, from childhood to current life, to any trauma, stress, etc. We must deal with it or we will feel it.

    That said, I have so many new blessings in my life THANKS to the nerve damage - a newfound patience and appreciation for life and everything in it, invaluable amount of time available to still be the best wife and mom my family deserves, I still have my mind and my mouth (and the smile to go with it) and I can still share that everywhere I go. There's a reason and a purpose and I plan to always seek it and strive for more ways to bless others.

    Without my journey into severe pain, I'm not sure I would have that insight just yet, if ever.

    Take care,


  • Do you think spinal specialists in the US and Canada all have training about arachnoiditis and choose to ignore it or do they believe it is rare and infrequent? I was made aware of it prior to my first surgery and have asked various specialists about it ever since, and I always get the "reassuring" response that it is nothing for me to worry about....I know that is not true, but what is the patient supposed to do? If your only chance at having your pain reduced to a manageable level lies in a surgery, and you're told the odds of developing arachnoiditis, most people would shrug and roll the dice. I know I did.

    Thank you for all the work you are doing to bring awareness to this horrendous condition.

  • Meydey - weren't you given a timeframe for the pump to start to make a difference in your life? I worry for you.

    Cherish - we are the same age! But I think you must be Wonder Woman - to have your attitude with your medical history - holy cow. You mentioned the delayed treatment.. but how did your back problems start? I'm sure I've read it somewhere, but I'm drawing a blank on my memory right now.

    Arach- I did some googling already - I tell ya, the hardest part is finding the correct wording- so thanks for the search terms. All this medical lingo is like a foreign language and without the right words you never know what to look for!

    Gwennie - I'm surprised (okay, not terrbily surprised -since you are always so informed) that you had heard about the 'arach...' stuff before your surgery - dang girl, you are such a store for great information! Keep it up!
  • I've been reading all the posts from everyone on nerve pain in legs. I'm 12 weeks PO now and for the past month have been having no numbness at all but total aches, throbbing, pain in both legs from upper thighs to my feet. My feet almost hurt the worst. At night trying to sleep I get the restless legs going and can't sleep. My doc thinks this is nerve pain and prescribed me neurontin which did not work and just started a couple days ago switched to Lyrica, which is not working either. The only thing that does work is norco 10 and ms contin. I don't want to be on pain killers any more!! I go in Monday for a CT scan of my lower back to see what it could be. I'm back to work now and I can't be taking narcotics at work. Thanks so much for reading this post. Any one else experience leg pain that hurts to touch my thighs or calves, but no numbness. The best of luck to all of you in your recovery
  • You COULD still be healing, The fact that you have pain instead of numbness is considered a good sign. Not that it's any consolation - originally I liked being numb instead of having the pain. Now -well, not so much...anyway...

    I wouldn't be too worried about having leg pain this early still. I'm almost 18 months and still get the occasional shooter nerve pains when I've walked and stood too much - can you say Christmas Shopping last week- OUCH!

    Sorry, I'm way too distractable today - back on topic - I would for sure be staying in touch with the dr. Maybe consider starting some PT if you are showing signs of fusion. I had to wait until the 6 month mark for an okay on the PT and I only had a 2 level fusion, so that may not be okayed for a bit.

    Oh - and WALK WALK WALK! Motion is the Lotion - that's what I was told a year ago October when I was 3 months post-op and having nerve issues.
  • Thanks Saltzworks for your input. thinking about what you said makes a lot of sense. I usually heal quickly and have had 4 shoulder surgeries total. I gotta tell you (you and everyone else on this sight already know) this does take a BIG toll on your body. I went through about 6 PT sessions mainly stretching about 3 weeks ago. I walk quite a bit am back to work(which is mostly walking,standing, an sitting)and am handling that ok. Is 12 weeks out too long to still be on pain meds. Ibuprofen just doesn't do it for me. Thanks so much for you help, Kevin
  • I think it may take around 6 months to reach a level that will help me. However, I've heard of some cases taking 1 year to get the job done and this still doesn't fully guarantee that you will be able to go without oral medications. Everyone is different so that means that there will be a variety of results, but the best case scenario is to not have to take oral meds anymore.

    Hi xMar, I don't think 12 weeks post op is too long to still be on pain meds. Like I mention before, everyone is different and we all have our own unique needs. It also depends on the severity of the problem and the length of time that you've been having pain I guess. It's hard to say but I think 12 weeks is early in the recovery process since it can take a year to get over having a spinal surgery. And on top of that, the nerves can take up to 18 months to heal.

    At 12 weeks after my TLIF I was still on Fentanyl patches, Norco, Valium, and other meds. Unfortunately the back and nerve pains continued and it was evident that my pain already turned chronic. I learned about other complications I had going on like scar tissue growing on a nerve root and permanent nerve damage. I had to keep taking strong narcotic medications or else I'd be bedridden.

    I know that you understand very much how it is like to go through such an invasive surgery since you had a 4 level fusion. Give yourself plenty of time to heal- fusions are the second most traumatic surgery your body will go through. The first is cardiac surgery. Don't feel bad if you still have to take your pain meds either. Uncontrolled pain can hinder your recovery and you would definately not handle PT like that. Walking is very crucial too and it wouldn't be good if you hurt so bad that you can't get out of bed to do that.
  • I was a real estate agent who started staging homes on the side, and we suspect (but have no proof) that moving furniture is possibly how I herniated my back? Whatever I did, did not hurt at the time.

    But honestly, although that describes how I may have hurt my back, what caused the nerve damage? Right after my first surgery, literally the next week, a family physician prescribed 2 courses of Levaquin for a skin rash. I have since learned that Levaquin is black boxed for nerve damage and having taken it so soon after a surgery in which my nerve was freed from impingement and trying to heal? And then I take a nerve damaging drug? I will never know the answer to that, but I do NOT take any fluoroquinolones again and never will.

  • Holy cow!!! Cherish, that completely sucks. Sorry to be so blunt there, but seriously!

    Do you know if there are any class action suits against the Levaquin stuff? I searched the internet after my DH got addicted to Oxycontin and we ended up getting a settlement out of it. He was prescribed it when all the literature and the dr.'s touted it as being non-additive. A few years later - oh, sorry for your addiction troubles, we were wrong it is addictive if used incorrectly. You never know.
  • Jodic9JJodic9 New YorkPosts: 2
    Hi Salzwork
    I had a two level fusion 7/13, L45 L5s1. So I am 3 years out.  I never had nerve pain or numbness before surgery just lower back pain that was getting worse. Waking up in recovery top of my left foot and left big toe numb.I mentioned it to the surgeon  when he came to my room that night, he dismissed it. I do not have severe pain, just a constant uncomfortableness from my lower left spine,along my left buttocks to my left big toe. I have 3 numb areas as well. Just can't get comfortable at times. As for the Orthopedic and the Neurosurgeons they have no explanation and just look at me. Went to another Ortho who sent me for an MRI and did an EMG. He basically said everything looks fine hardware and all. One nerve seems a little thicker(I'm thinking scar tissue). So in my researching and finding this bulletin board from what I am reading it is permanent nerve damage. Not sure if its L5 or S1 Nerve. I feel bad for everyone dealing with tremendous pain.
  • LizLiz Posts: 7,832
    Hello Jodic9
    This is a very old discussion, the member who created it has not been on the forum for 3 years so will not respond. I am going to close it.
    I suggest you create a new discussion with help from this link below.

    Please click on the link for useful information

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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