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Finally done in.

thenadetthenade Posts: 137
edited 06/11/2012 - 9:02 AM in Chronic Pain
I have been a member here for over 3 years. Initally used this forum for info prior to my L4/L5 spinal fusion(Oct 26/09) and info after and encouragement for fellow spineys going through surgery during the same time. Over the last year or so I have been pretty quiet. Althought I read everyday and look for inspiration to keep going. But going on the idea of "if you don't have anything good to say, don't say anything at all". Some history, L4/L5 fusion went ok, out of the hospital in 2 days. No brace, minimal drugs after. Surgery was for major stenosis, cental, foraminal, and lateral. But after about 2 weeks major burning pain much worse than before surgery. Right leg much weaker, strange sensations in both legs.E.I. burning, tingling, some numbness, not in a particular dematone pattern, feet at times will swell. This has been going on for 2 1/2 years. I keep going, so much that I now have a labral tear in my right hip.(My gluteus medius dosn't have the strength). No amount of exercises help, toe ups,glutes, stretching etc. Various studies, CT/MRI don't point to anything specific, no significant perineural scarring, some scar tissue does abut the L5 nerve root blah blah. Tear at L5/S1. I don't even know if I am fused.( No BMP) Surgeon says that my screws have not moved. My surgeon was done with me after 7 months. "Try to keep active, sometimes these things burn themselves out", were his words. EMG studies say that I have a slight nerve damage of L5 nerve root. But why all these other weird symptoms? I have tried all the nerve meds, don't work or have so many side effects. 1 epidural. Cymbalta, Effexor, Pristiq(no help). I have not been on opiates. I am not against them but I have left them as a last resort. I deal with pain daily at about 7 unless I lay down. Of course anxiety, depression are all there. Can't get a second opinion(this is Canada), lucky to get a first opinion. I have been referred to a pain clinic which can take up to a year. I am wondering if I have arachnoiditis but no one has mentioned this on my imaging studies and I gather sometimes they don't unless it's really evident. I am posting this because I can hardly keep going. Days, weeks, months have no meaning. I don't know how some members keep going. I am about ready to give up. What do members think I should do? Like my subject said, I'm done.


  • Here is my take on the slight nerve damage. I liken it to you are either prego's or not, so you either have nerve damage or you don't. I do understand your surgeons opinion on sometimes these things work out, as something close to what I heard after loosing the use of arm. He was kind of right that some of it came back, to make it useful in someways. But the bottom line to me is you have nerve damage. I like you held out not taking the opiads as I was against them at the time. But you know finally something had to give, as I was getting desperate for relief. They don't take away everything but they help. More importantly I have found that it takes a combination of the meds to work.

    Now don't give up all hope as who knows maybe a SCS maybe the answer for you. You can explain to the pm doctor that you would like to keep it a last resort. But more importantly in your case, I think they haven't truly found the pain generator, and it doesn't matter what they do, unless it is opiads that kind are a hit all thing. So they can inject all day long, but if they don't know what they are injecting, well then it won't help. Along with having cervical issues, I also have lumbar issues and my pm doc had been doing injections, and not getting much relief. At the last appointment he asked if I minded if he hit two levels both sides, I said of course not(why not try), well low in behold I got the best relief in a long time. So I am lucky with my pain management doctor that he is not afraid to try and realizes that images aren't perfect, my symptoms told him something else. That is why it so important they use all the information.

    If I was you I would make a complete file of everything you have tried and what the results where, even if they were short term as in a two days. Some injections are not meant to give relief, but rather diagnostic in nature. I would also keep the pain diary/journal to see what your doing and what makes it worse and what makes it better. Of course you said laying down, but is there a certain position that helps most. Do you use a ten's unit, and what are the results of that? Does ice or heat help at all, and what happens when you use it, as in what kind of pain. Keep track of the kind of pain you have, be it pins and needles, numbness, stabbing and so forth. Then take it all to the pm doctor and see what happens.

    I know there are a few others from Canada TammyC how post mostly in the cervical spine was successful in getting a new doctor so you might ask her how. But first I would go the pm route and see what happens. Do you have any idea where you are in the list waiting to be assigned one? Keep us posted on what happens. Just know we all understand how frustrating all of this can be.
  • Thank you for posting a reply. I agree with the sight nerve damage. Bottom line is that it is damaged. That causes my hips and legs to be weak plus all the pain. Physio and a physiatrist have determined I only have about 3+ strength in my glutes. Therefore when I walk I waddle(didn't do this before surgery) and cause all sorts of other problems as I try to recruit other muscles to keep me upright. I'm swinging my right leg forward unnaturally, therefore the tear in my hip labrum now. I have tried to keep going like this for over 2 years. I try to exercise them so I won't get complete atrophy but they won't get any stronger. A lot of these muscles are innervated by more than 1 nerve so I guess that is why they have some strength.

    I really don't have any idea when I'll see the pain clinic. They say up to a year to get an appt. My physiatrist called to get it bumped up but no luck.
    I read an article that in all of British Columbia the amount of surgeries for SCS in a year equal what is done in 1 pain clinic in the US.

    I just don't understand this other pain I have now. Burning in legs, butt, perineum area, over sacral area. This will start up spontaneously at times. If I lay on my left side things will settle down. Has anyone else had this start happening after surgery?

    On Tuesday I am going to a spine clinic for an independant assessment. He's not a surgeon but will go over all my tests and give his opinion. He also does all the injections there. Expensive but I am at my wits end. In BC, if you are referred for injections it can take 6 months to get them through the medical system. Not that I want injections if they are going to be useless. I already have a lower bone density and I am no longer as active as I was. Starting to spent more time in bed staring at the wall. An epidural I had didn't help.

    But since Christmas I am going downhill. Mentally and physically. I wake up just terrified, in pain as soon as I get up. Not wanting to eat, interact with people, can't concentrate or feel any joy. I just try to keep going but it is so hard right now.

    I appreciate any comments from members re their experiences and any suggestions.

  • thenade said:

    But since Christmas I am going downhill. Mentally and physically. I wake up just terrified, in pain as soon as I get up. Not wanting to eat, interact with people, can't concentrate or feel any joy. I just try to keep going but it is so hard right now.

    I appreciate any comments from members re their experiences and any suggestions.

    Wow, I'm so sorry that you are going through all that. Screw it. If you've got access to opiates, give them a shot first thing in the morning. They might make a big difference to you. I don't see a point in waiting until you feel worse, because it sounds like you are in a real nasty place already. My heart goes out to you!
  • I would go for another Surgeon opinion. I know it's a long wait though. I live in Toronto and didn't have to wait more than 4 months for a Neurosurgeon or Orthopedic Surgeon and have seen 3 Drs.

    I waited only 4 months for the pain Management Center at the hospital and to speed it up I found their email online and asked them if they received the 50 page questionnaire I sent them and the next day they called me with an appointment.

    Be persistent and see your Dr. again about an anti-depressant to help.

    What about hardware removal? I would see another surgeon if your Surgeon won't see you.

    Why not try a slow release narcotic? It's not the last resort there's a SCS or pain pump but you may want to try some pain meds first. At a 7 on the pain scale I'm using the ice pack and getting ready to go to ER that's pretty intense pain to live with everyday. I've taken Oxycontin and MS Contin and now being recommended for the Fentanyl patch by the new PM Dr. I have. I take Naproxen and sometimes Baclofen also a and ice packs a lot. I take Serax at night and it's an anti-anxiety med but also works as a muscle relaxant also.

    Just wondered if you tried aquatherapy in a warm water pool yet? You can find a PT to instruct you or check out your community pools for a warm water pool. I found arthritis aquafit at a local pool near me.

    Keep us posted. Take care. 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
  • My physiatrist did refer me to another Neurosurgeon for another opinion but he wouldn't see me and suggested I go back to my orignal surgeon. My original surgeon said at 7 months, there's nothing to operate on and that's what he does. My original surgeon is one of the top surgeons in BC. He felt that I should have had very good to excellent results. I had a grade 1 slip also, that needed to be stabilized cause it was moving. I had to wait 15months for surgery and when he got in there I guess the compression was way worse than what showed on the MRI. Previously I didn't really have severe neurological defects just pain. And that's how they base their surgery time. Now I have both. About 20 years ago, my husband had a severe disc herniation with major defects. Had surgery in a timely manner and was back playing softball in 6 weeks. He is still good today albeit with other minor aches and pains.

    I have tried everything, massage, physio, acupuncture, pain psychologist, to try deal with this. As I said I have not tried opiates and I need to buy a TENS machine. Any suggestions which brand? I do take about .5 mg Ativan every few days for my anxiety and somethimes it helps the burning. How do opiates make one feel? Can you still do things like shop, go for walks, go out? Can you carry on with life but just be in less pain? Long term, short term acting? I know I sound terribly naive about them. I guess I am somewhat like my Mom. It was only about a week before she died from cancer that she started taking an opiate. We were always just taught to suck it up. Can't do it anymore.

    I have followed your story for some time Charry. You are always so kind and helpful and from the big TO. Yay! Thank you to all members for your help and support.
  • I take slow release and have no side effects, no high nothing. I'm sure I may feel tired more because of them. I have tried without them and can't get by. I can get out of bed and do some walking but not everyday.

    Usually your Dr. starts you on a low dose first.

    For a TENS unit you may want to try and see if your Physiotherapist has one you can try first. I bought mine online at ib3health really reasonable prices. 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
  • Sad thing is if you realy do have nerve damage and enough time has gone by where it wont no longer heal its like draging a dead horse while seeing other dr,s for more opinions i found,

    After my 1 st surgery i ended up with l4l5 disc replacementand nerve root damage to the nerve, Dont take very long to realise that pain from the nerve is worse then any back pain i have ever had,

    I could not believe they could put me in more suffering with surgery and they have no way in fixing once damage is done, I was sure i cant live with it and found multiple dr,s and most turned away from my situation simply just recomending scs because they know not much of anything can be done for nerve damage other then manage it some way with meds or scs or both,

    New dr i found did think fusion might stop movement and nerve might be agrivated less so i opted for fusion out of being desperate but of course it did not help,

    Even now with a scs finaly implanted its very hard to get any releif and its just trying to mask the pain but in no way totaly controling it when it get out of control,

    Nerve damage as this is the worst fear we have going in to surgery that we hope never hapens, When nerve meds fail to work and even an scs is not something that helps enough to manage dailey life like it should we prety much screwed,

    I am now 8 years dealing with nerve pain and often dont deal with it much beter then when it 1 st started, If i did not have any valium on hand i would still be visiting er even with my scs when it gets out of control,

    All it takes is 1 nerve to be damaged as they are connected and when 1 flares up causes a chain reaction of many other symptoms and nerves to react and explode along with it, Thats when drs have a hard time knowing what the cause is because now everry nerve is causing other symptoms along with the original nerve pain issue,

    After all we are talking about spinal nerves that control all functions in our body legs arms nervious system, controling our breathing,

    Good luck hope they can find something for you and trust me you are not alone in this torture and suffering,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Hey Alex, I follow your posts all the time and recognize our situations are very similar. There is so much I don't understand about this nerve damage. Why does it seem to be getting worse. My legs feel so weak now. I try to exercise them. Is it progressing? Emg says no current compression. Interesting about how 1 nerve starts up and then others join in. Last night I was laying in bed and starting gently rotating both ankles. Pain starting burning from my waist down right to my feet. Started sweating and all of a sudden both arms started tingling.(no cervical problems) If it wasn't so sad, it was amost laughable. Be a great plot for a horror movie. I sat up a bit and it all started to slowly go away. Do you find that your pain is positional? I don't know how I am going to deal with this. First of all you hope that it will heal and go away, then you start trying to think you can overcome it by maybe ignoring it and trying to use your mind, then you get real scared cause no one can help you and its always there. You change, I am at the point where I don't want to see anyone and am starting to just lay in bed cause I know its gonna hurt soon as I get up.But that's not good so I force myself. I have made concessions in my mind. Ok, it's ok if I never travel again, can't do much around the house or garden, walk funny, but stop this freaking pain. But it doesn't. How does one go on? It affects husband and daughter so much also. Sometimes you start thinking they would be better off without you. But as I have read, my pain would be gone but it will just get passed on to people left behind so that is not an option. Man I'm really pouring my heart out here but only people with chronic pain can understand.
    I don't know what the future holds for me. No one does. I would just like to live out my years whatever they may be as a whole human being, not how I feel now. Thanks for listening and any comments.
  • In my opinion once mri shows our spine is stable and all test confirm that, The nerve damage already there is not going to get more damaged,

    It may feel like its geting worse at times because it hurts so bad but i myself dont worry about damaging it any more then what it is now or i would not do anything being so worried about it,

    I do as much as i can when it lets up and many times over power it but nerve has a way of fighting back kicking your ass, Mine is worse siting and standing,

    You can push through a lot of the mechanical pain but once nerve flares up full blown it will drop you to the ground i dont care who you are and nobody with that kind of pain can fight it off, Only when they think they have the same nerve pain and such they might claim yes its nothing just push through it,

    Just as you see people who have compression and pain is so bad they go out of there minds but in most cases they are lucky enough to only have it for a short time and it heals or surgery resolves it,

    When that nerve is damaged it can and usualy does feel same as what those people had with compression that they barely was able to deal with before there surgery or before it simply healed on its own,

    And some of us are stuck with feeling this for life without a cure,

    Nerve damage can vary to mild to feeling numb or weakness in legs or arms, or pins and needles,

    And there is the deadly nerve pain that most people dont understand, When it feels as if you took a bullet to the spine and drs say sorry nothing we can realy do for it but here we have some nerve medications you can try, To most of us thats just simply not enough to our problem,

    Or here take some vitamins that should calm the nerves down around the bullet stuck in your spinal nerve root,

    You see some of the bigest badass guys out there who can hadle just about any pain and soon as they find this kind of spinal nerve pain from some compression come on they drop to there knees crying like a litle girl,

    So many times it has nothing to do with being strong or weak, Serious pain is serious pain, And long term serious nerve pain will drain you and you think no way anyone can survive this day in day out, And without serious meds probably cant,

    Only a fool would think otherwise, Many of us are living other peoples worst fear of coming out of surgery with this kind of nerve damage from surgery,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Hi -- Nade, you are not alone! I know it feels like it.. but you did the exactly right thing by starting this thread.
    We understand.. and though I have no answers for you.. (darn it eh>?>. )... I do have some things I do on bad days to help.... and will share them here!
    Warning... I have a warped sense of humour I have been told! lol
    I call my back bertha.. and take out my frustrations on HER.. not me. I keep Me for positive.. healing, relaxation, learning... moving in a good direction... good music, a comedy on tv..
    when i feel...I am done! I start turning on bertha... I make up songs about the pain.. how I demand she leaves.. a few curse words.. and make my brain try to find some humour.

    I also have a loved one very close to me that has MS.. she is unable to move, lift her cup to drink. She is my inspiration. When i feel the pains.. atleast I can move. I can drink my water when I want. That helps me live in me.

    I really love Alexhurting and Charry-- and their advices.. they many not know this, but the posts have sure helped me on my lurking days on here-- always supportive...
    I wish you a wonderful day today nade...you do have friends.. and another fellow Canadian too eh> :)
  • Nade,

    My thoughts are with you. I know how much pain can drive a person crazy. There are many times that I literally think I am losing my sanity. I just wanted to drop you a line and let you know we are here for ya! This is an awesome extended family.

    There were/are days that I feel as if I don't even want to continue, and I had so much support from members (MetalNeck, Bobfrom NJ, Tamtam, and many more) that it made me see things differently or just helped to lift that "funk" from my day. Sometimes you just need encouraging words from people who care and you realize yes you are in pain, and it sucks a$s big time, but you have a great support group here that will help you through it.

    Sally711 - You put a smile on my face at 7:30 a.m., which is very hard to do ;-) I have never thought to 1) name my spine or 2) "turning on bertha... I make up songs about the pain.. how I demand she leaves.. a few curse words.. and make my brain try to find some humor." Freaking awesome!!! LOL! That is such a positive, humorous way to think about such a horrible pain.
  • Sally, yes I like a warped sense of humour. People used to say I had a wry sense of humour which I guess means bent. I like some of Alex's funny comments, which I GET. Charry is a fellow Canuck and very helpful. I guess I find some healing things hard to do cause I just can't concentrate. Used to love to read and always had a book with me. Now I look at magazines with big pictures and little amount of writing. About all I can handle. Music is great although some makes me melancholy remembering what I was doing when I heard it for the first time. Did catch Greg Allman on Piers Morgan last night and man that old southern rock of The Allman Brothers brought back great memories.I understand your feelings about your friend with MS. I keep telling myself that, and try to remind myself of all the good things I have. When I was at my doctor's last I told her, Yes I know I don't have cancer but I do feel like I'm fighting for my life. I think she understood. BTW,I mentioned the standing MRI to the spine rehab guy I saw yesterday and he is aware of the one in Kamloops but didn't think it would help me to find out anymore about my situation. Did you get any relief from your EPI?

    Mel, thanks for your words of support and taking the time to respond. I know you are going through your own stuggles daily.

    Didn't learn too much from the spine guy yesterday. He went over all my tests and imaging. Said nothing is really jumping out at him. Can't define my exact pain generators. Could be hip, SI joint, and the slight nerve damage that is contributing to pain and how I move. Did order flexation/extension Xrays to see how all levels of lower spine are moving. Said could do injections starting with simple lidocaine into SI joint and then maybe a L5 nerve root injection. Wanted me to see another physio that specializes in pelvis and dysfunctional movement.I decided to try that first. He did not feel I had any showings of arachnoiditis on my imaging. So that's all I know so far. Hope everyone is having a better pain day or at least a day that you can cope with it better.
  • First let me say that I am not a dr and am not giving medical advice. I am only telling you what I have been through. Without going into my tons of problems, I do suffer from nerve pain. I am currently taking gabapentin (neurontin) at 600mg 3 times a day. It works great for me. Sometimes new nerve pain will pop up amd that's when I have an epidural. Those usually keep my nerve pain in check. But I really like the gabapentin,it is also used for relief in shingles and diabetic neuropathy, both of which are nerve pain issues. I do see a pain specialist. Good luck.
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