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please make it stop

In 2006 /2007 i started getting severe neck pain that shoots down my left arm & hand with numb /tingling fingers. 2008 i had c6/7 anterior cervical discectomy & fusion. after the operation things was great for about 2 months then the pain returned, the numbness & tingling came back. after many attempts to contact the surgeon my GP sent me to another orthopaedic spine surgeon, he sent me for a MRI scan. The scan showed that the cage (graft) that was placed between my c6/c7 had fallen into my c7 vertebra. After two more years of agony another surgery (posterior instrumented fusion C6/7 + left C7 neuroforaminotomy) after waking the pain was so intense. my surgeon believed that some of the progenix plus had gotten onto my nerve & it should ease. two more years of chronic severe pain another operation. apparently the bone that the surgeon had so carefully ground down had grown back & was pushing on the nerve. The opp was done straight down the second opps scar he removed the bit of bone & he also removed all of the rods & screws as all the scans & ex-rays showed that there was good fusion between C6/C7 . Its now 6 months since that opp the pain is still there plus i now get really bad head aches almost daily. The muscles at the back of my neck are so hard & tight all of the time, my arm aches all of the time ( i would give anything to go back to the way i was before the first surgery). I dont know wot to do im depressed & scared i might do something stupid on one of the many lonely long sleepless nights. I am starting to think that its the cage that is still rattling around in my C7 vertebra that is causing all of my pain. My life is falling apart i live in a pill bottle, if i do sleep i wake up to pain. The pain is the last thing i feel when i fall asleep & the first thing i feel when i wake up. i am so lucky i have a very understanding wife other wise i think i WOULD have taken my own life long ago. i realy dont know how much longer i can this pain. If any one has any advice or tips on how to manage my pain please please let me know.


  • Complication with surgery hapens more then some people like to think, I had bad outcome after artificial disc replacement in my l4l5 and nerve damage and i myself wish i never had the surgery,

    Pain can realy beat you down when surgery makes things worse,

    I like to think i reached rock bottom and working my way up in dealing with this, You are probably at or near your all time low and can only go up from here,

    It will get beter trust me, it can take a very long time and positive thinking helps a lot when things are real bad,
    Just take it day by day and keep the stress away,

    Many have fallen in to deep depression due to this and very hard sometimes to keep you head above water !
    Thats how many of us ended up here near our all time low and found some others have same issues so yep there are others even if diferent surgery ,

    There is not 1 person out there who had to go through such suffering after surgery complications and pain who did not at 1 point say i cant live like this, But some way some how we find the strength and overcome it an go foreward,

    When a person has been at there worse they realy learn to appreciate geting even slightly beter !
    I am sure you will get there,

    Best wishes,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • thanks for your kind & encouraging words i really hope i have reached rock bottom & the only way now is up. I just cant remember life without pain. I am very grateful to all the surgeons & nursing staff who have tried so hard to fix my problem. I feel that my pain is leading me into a very dark & lonely place. I find it very hard to pretend that i am happy & positive. Apart from my darling wife my only friends are chronic pain & depression. Is this going to be with me for the rest of my life? i don't know if i could go threw another operation im to scared it will just make it worse like the other 3 have. is there a light at the end of the tunnel & im just to far away to see it? god i hope so.......
  • I read your post and cried. I am so sorry for your suffering. It seems so unfair, but you will get better. You must have hope and faith. Your wife loves you and that should give you the determination to fight this pain. There is a light, you just have to find it. I don't know where you are located, but if I was you I would search to find a neurosurgeon who might help you. Lexington Ky is full of wonderful doctors.
  • RangerRRanger on da rangePosts: 805
    hey bundy,
    Alex is right, so many of us here have been thru what you are experiencing. We go thru these cycles, you're down and
    feel you can never climb out of that hole. Then you're all amped up and you look back and wonder why you ever were
    that depressed. I've been thru a few major spinal repairs and now I'm looking at another in the near future. It isn't a surprise,
    they told me years ago it wasn't a matter of if, it is when. It's just my genetics. Try and stay busy with anything that will keep your mind off the pain. Set goals that are attainable, meet those goals, and move forward to achieve higher goals.
    I agree with Cathy also, never forget your wife, loved ones, & friends. Watching what you are going thru is emotionally painful for them, always keep that in mind. I know at times it is hard to suck it up and keep smiling but you can do this.
    I look at this life as a continual non-stop challenge and whatever it throws at me I'm going to meet it head on.
    Best of luck to you and keep us posted.
  • Sorry Cathy for upsetting you. That was the very last thing i wanted to do. Thank you Cathy & Ranger for taking the time to read & reply to my post i am most grateful. I live in New Zealand i have a very good GP & a brilliant surgeon who are both working very hard to sort my problem out. Today has been very tough. To be honest today it broke me, very soon after waking i was in tears, i don't think the pain is any worse than any other day. I just don't know how to deal with it any more. Im just bloody over it so to speak. To be honest its my wife Ange who gives me the will to dig my nails in & not let go. But today she caught me crying & it hurt her very much. I cant keep doing that to her. I am hoping by putting my thoughts in writing (or venting) it might get rid of some of the Grrrrr in my head. Reading many other posts shows me im not mad & there are many others in same situation as me. Over the last few years my pain & lack of sleep has put me in a very lonely place. That has to change I have to make it change if not for my sake for Anges. In the 20 yrs we have been married i have never seen that look on her face & i hope i never do again. This is my pain not hers.
  • Vent away! We will listen to you and try to help you through your pain. Bless your heart.
  • bundybbundy Posts: 61
    edited 02/10/2013 - 1:50 AM
    I have a appointment with my surgeon in a couple of weeks. On a good day that's positive news he might be able explain the pain i have & assure me it will go away in time. On a bad day [today is a very bad 1] its great another two weeks of agony then when i do see him he'l just give me an order form for a x-ray or MRI. I will walk out of his office with the same pain i walked in with. Everyone says my problem is in my neck but its not my problem is pain simple just pain. Just like the other operations i knew there was something wrong & its even worse this time the pain is severe. My arm feels like its on fire & the numbness/ tingling in my fingers has returned with vengeance i don't think it was this bad before the first operation. My neck & shoulder ache all the time & i'v noticed i have numb patches on my skin. As i see it there's two possible outcomes to this, its i need another operation & it will fix the problem or i'l be told there's nothing they can do & i'm stuck with the pain for life. I really don't know witch one scares me more. Its really hard to get motivated its hard to be happy its just hard living. If this is it i don't want it. Its 1-30am & i cant sleep but that's normal these days. Is it normal to feel like this or am i really going mad?? I just want my life back & i'm willing to give anything a try to get it. So if anyone has any suggestions please let me know.
  • calamityccalamity Posts: 19
    edited 02/10/2013 - 2:12 AM
    ing more gooiHi i am new to this forum i joined last week. I like u have been in a very bad place this last year just gone and if it hadnt been for the support of my lovely husband i dont know where i would be. I was in pain couldnt sleep kept getting infections which i thought was all due to my kidneys. if it hadnt been for a different doctor who diagnosed thoracic spine problems i dont know what would have happened i just kept telling everybody i think i am going mad. But now that i have been put on the right medication i am having more good days than bad. I just wondered are u taking any depression medication as i am now taking 15mg mitazapine at night which does help with sleep and depression as well. I know that my pain is nowhere near as bad as yours is and i do really feel for u but i know it does help to talk to other people on here
  • please excuse the beginning of my post i think my computer had a mad moment
  • Thank you very much for reading & replying to my post. I am also new to this site, i wish i had found it years ago. I have just began taking depression meds . With the depression meds & all of the pain meds i feel that i spend my life doped up, & still the pain gets through. I find that putting my thoughts & feelings in writing does help. I too have the love & support of my darling wife, I'm positive if i didn't have her i would have ended it years ago. Its not only the pain that's the problem there's all the side effects that go with it. There's the lack of sleep, loss of my apatite & i feel like a pill popping junkie. They really play with my mind & i am terrified as to where all of this is taking me. I'm sick of being grumpy all of the time i'm sick of taking the pills, i'm sick of not sleeping, i'm sick of being me. I am sorry for babbling on,i'm just trying to get the Grrrr out of my head before it makes me do something really stupid. Thanks
  • RangerRRanger on da rangePosts: 805
    I'm not just saying this but your thoughts are very real among many of us here. We go thru many stages and mood swings with chronic pain. First off please remember, your pain may be harder on your wife than you realize. That being said I always try in any way to suck it up, find some sort of humor in it as strange as that may seem, and laugh at myself so I don't hurt my wife and her emotions. I know when she has some pain or issues I would do anything to take away her pain, it really bothers me to see her suffer no matter how minor her discomfort is.
    Right now I'm going thru another bout of sleep deprivation due to adjacent joint failure above and below a previous fusion.
    I try not to do meds but I finally caved in and take something to help me fall asleep, other than that, I just tough it out. To me I treat this situation as a challenge, my pain will always be a way of life, I need to face it and meet it head on. I can't tell you what changed my attitude but looking around and realizing there are so many others out there worse off than me, I have to focus on what I can do, then take it to the next level and push it further to be the best I can be. Maybe I may push it even
    past what would be recommended but I only get one life, one body, so I'm going to try and live it to the fullest, even if I have
    been dealt some limitations.
    As for the "bad thoughts", that is normal. But just remember the ones you love and the ones that love and care about you.
    If it really gets bad, seek professional help, it's there for you if you need it so don't be afraid to make a call.
    If you ever need to vent or someone to lean on, PM me.
    Take care,
  • My father had back surgery about 6 years ago. They told him up front it probably would not help with the pain, but would keep him from having severe problems down the road(bladder, bowels) . My father opted for the operation for spinal stenosis. He is a retired business man who runs a large farm. For the first year I seen him struggle, he never complained but we could see his struggles.
    He probably had some dark moments. I have had dark moments and I have not had any operation.
    My dark moments come from the simple fact no one can tell me why my tongue tingles on the tip. It all started with shoulder pain. No one can tell me why the side of my face feels like a mask is on it.
    Every doctor I see tells me the neck has nothing to do with the facial nerve. I beg to differ.
    I have had doctor tell me I was depressed! well heck who wouldn't be!
    I try to take my mind off of it. No one can tell me how bad my neck is. Some say go ride your horse, some say don't.... yadda yadda.
    I feel your frustration, I feel your pain. Hang in there.
    I will be going for a lumbar punture next week. Although i feel it is stupid. I know in my heart it is stemming from my neck.
  • Last night i was thinking is this real, is all my pain in my mind. Do i just need to be a man & harden up? But then at 4.30am with my shoulder ,arm & hand on fire. MY head was thumping & the pressure in the back of my head felt like it was going explode. My fingers were numb & tingling. With tears running down my face i thought this is very real. Too real. Thanks Cathy & Ranger its great getting encouragement & advice from people who are going threw the same sort of things. The pain has put me in a very lonely place & this web site & you guys have made it less lonely. Thank you all very much for that.
  • Sorry to hear you're having a rough go of it. I have been out of work 5 years due to low back pain but have herniated discs and severe arthritis in neck but sounds like your head pain is pretty severe. I hope you can get a second opinion from another Neuro or Orthosurgeon and hope you get a CT soon. Have you fused yet?

    Are you seeing a pain Management Dr. as sounds like a lot of pain and not enough sleep. One day at a time and saying a prayer for you. 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
  • I am sorry for bleating, I was just trying to make sense of the thoughts going around in my head & maybe i might get some sleep tonight. I'am not trying to make out that the pain i have is worse than anyone else. In fact its probably much better than most & i'm just being a baby. I have an appointment with my surgeon next week & wot i do next depends on the outcome of that. I agree with you Cathy i believe that we know our own bodies. I knew when the first two operations had failed & i took a lot of begging to get someone to take a look. After the second operation i think he sent me for a MRI just to shut me up & he was very surprised at the outcome. So keep at them Cathy sooner or later someone will look. One thing i have found is during the many sleepless nights is the amount of soul searching i have done. I am truly shocked with how much all of this has changed me & i really don't like who i have become. Being a male i only ever worried about the physical side & it never occurred to me that the mental side might need some attention. By the time i stopped & looked i was shocked at how messed up things were. There is only one person that can change it & i am going to do it! i have no idea how i just know i will. Before all of this i was an outgoing hard working energetic guy now i can't work & i spend all my time at home. Its amazing how home can feel like a prison. But like i said before only i can change that. About a month ago we had to sell our car as we couldn't afford to keep it on the road & legal, That played a big part in feeling like i was in prison. Somewhere in all this mess is something positive i just have to find it. Sorting my head out will help with pain, even if it doesn't i will be busy doing it & i won't notice the pain as much. Good luck Cathy with your lumber punch next week i hope it all goes well for you. Thank you all for your prayers & best wishes it really makes our world a little less lonely .
  • RangerRRanger on da rangePosts: 805
    hi again bundy,
    You need not to apologize to anyone here. Your feelings that you are sorting out are not any different than mine and probably most anyone else here. From what you are posting here you really have a handle on your situation, just keep moving forward.
    You hit the nail on the head when you said, "there is only one person that can change it & I am going to do it." You just have to want the change bad enough, so be your own advocate, don't depend on any one else. You need to be that role model for family & friends.
    Then we come back here to support others with the hope we can make a difference.
  • I am scared too death about lumbar puncture. I just wish someone could tell me if lips and tongue could be from a c3-4 bulge with stenosis. I am getting frustrated and so is my family. Makes me sad.
  • RangerRRanger on da rangePosts: 805
    hey cathy,
    Are you talking about a myelogram where they inject dye into the spine and do a CT scan? If that is what you are referring to with the lumbar puncture please don't let that frustrate you. If you follow procedure it is an easy test and also it shows very detailed views of the spine.
    Hope you can get your emotions together, I so understand how you are feeling. No one knows those feelings unless they have been there. It's an emotional roller coaster, when we are on the highs we think we never will bottom out again, but we do. It's not a matter of if but when. We just have to pick ourselves back up every time and show our strength within to the others that really care about us.
    Hope you feel better real soon.
  • Thank u. It is a test to check for MS. I am a wreck. I am normally a stronger woman but this has weakened me.I am scared.
  • The nuero does not think my facial symptoms and tongue tingling are coming from my neck. I have no pain in my neck. I do havethree levels of problems. One being 3/4 bulge. I have had neck pain before but never the face stuff.
  • Sorry to butt in here but I read that you were concerned about your lumbar puncture. I had one in August to test for MS as well, it was nerve racking to tell the truth and a little painful but not so bad. But I can tell you that I have trouble with facial numbness, tingling, twitching, etc and that a later MRI showed herniations at c3 thru c7. I am having a multi-level acdf in march.
  • bundybbundy Posts: 61
    edited 02/18/2013 - 1:43 AM
    Hi Cathy i cant give you any advice on lumber puncture but i can tell you that the procedures i was most worried about were not as bad as i thought they would be, I hope & pray it is the same for you Cathy. I think you need to keep at your nuero until he looks at your neck especially after reading armymedic's wife post. Or there's always a second opinion. I am a firm believer in that we know when & where problems are in our own bodies. I know it can be frustrating Cathy but you just have keep on at them. Thanks Ranger some days i feel i have a firm grip on my emotions then other days i can feel my grip slipping & then there's the days where i just cant be bothered even trying to hold on. Those are the days that scare me most. All my prayers & best wishes for you Cathy i hope it all goes well for you..

  • Army wife....Wow! Just what I have been saying... My neck never really hurt in the begiing just my arms. Then it started with the eye twitch, lips tingle Burning on tip of tongue! I am getting better, at least until I had that stupid lumbar punch! I hate feeling like this! But what I really hate is when the drs. Don't listen. Thanks guys! My hubby is great, thank God! He told me the other day if I had been a horse he would have shot me by now. LOL. One of two things happened or maybe I want to blame it on one of two things. I know I have DDD , I know I have forminal narrowing in 6/7. Bulge in 5/6 and the 3/4 one...but honest to God only my ARM and eye was twitching. I told my husband either the chiro or the cortisone done it. His reply....well honey how about the horse accident,dirt bike wreck...oh Yeah...
  • I'm sorry you are going through all of this. I have Cervical issues from moderate osteoarthritis @ C1-C2 (C3-C4 is actually ok!) then it is all down hill from there....4/5 moderate foraminal narrowing, 5/6 severe foraminal narrowing. 6/7 mild foraminal narrowing. Mild disc buldge @ C6/7. I'm 37 and it all started in my 20's with headaches....figured they were period related. Then as I got older they got worse. Then I had an episode when I reached across my body and my left arm went numb. I figured it was a muscular pinched nerve...but it lasted MONTHS. Any way, long story short I have DDD along with the other issues. My hubby is also great (I keep telling him to trade me in for a newer model!)
    But recently I have noticed my Left eye won't open as much, it will twitch (thought it was stress related) If you look up "tongue numbness) one of the possibilities is a bulging/herniated disc.
    I have found that with this Spinal issue you have to do your research (thank goodness for this site). You have to push for testing that will help determine what is going on. And you need a great support system in your life.
    Best of Luck!
  • Thank u for your post. I can't let this beat me down! I have so much I want to do. This all came out of no where. I had never had weird symptoms like this before. Had not had neck pain at all. Then wham! The spinal tap was terrible! Headache from hell and I had to miss work. I just want to het better. This mouth thing is driving me nuts and the whole numby feeling in face. It is so very hard to put on a smiley face and act like nothing is wrong. I keep thinking it is something else. The doctors keep reeling me my neck is has nothing to do with the face. I am stressed beyond my max. I just want to ride my horse and feel good like I did 6 months ago.
  • How are you feeling? I have been praying for you nightly. I ask God to give you strength and to be pain free.
  • bundybbundy Posts: 61
    edited 02/26/2013 - 7:39 PM
    Its been an up & down couple of weeks. I went to see my surgeon last week, He was surprised that i have so much pain & lack of strength/movement in my arm. He told me the numbness in my fingers & the headaches are nothing to do with area he operated on. Big help i was hoping he would tell me wot was causing it instead of telling me he wasn't the cause. I say again Big Help...I have great respect for my surgeon but im coming to the end of my tether. Anyway its off to get more x-rays & an MRI scans. I really find it hard to be positive now & the only thing i have in my future is more pain. I know there are people out there worse off than i am. I think the depression is winning i don't see my friends much anymore but i can understand that, I don't like me ether. I have been thinking that i might talk to my doc about coming off all of my medication, I take so many tablets each day & still the pain gets through. The pain is severe with all the pain killers & i believe it wont be any worse without all the poison (pain killers). I don't know if this is the ramblings of a crazy man or the norm for someone in my situation. I know things will get better but it scares that it might get worse & i don't know if i can deal with it. I was reading an article on medical cannabis & how it helps with pain, has anyone tried it? Its not legal here but im at the point where i will try almost anything.
  • When did you have your operation? How long ago? Sometimes it takes.awhile to get over. Depression causes worse pain. I know this might be hard for you to do, but try..go walk even if it is for 5 minutes. Find a place with an in door pool and float. Walk in the pool. Your muscles in your neck could be all screwed up. This happened to my dad after his back operation. Reagaing the muscle control might help. I wish so much I could take your pain away. I can only offer advise and Prayer. The body is a strange thing . A lot was moved around during your operation. I had a hysterectomy some years back and had weird pains everywhere. Nerves are cut, muscles stretched. It makes me made when a Dr refuses to tell one this and you walk away thinking your crazy. If they would just be truthful and explain it would help.
  • Hi there, i'm sorry i haven't replied to you sooner but i have had so much trouble getting motivated. Hi Cathy you asked when i had my operation the first was in 2008 second in 2010 & the last one was in June 2012. I have been trying to do more we don't have a car anymore so we do walk a great deal more & i do believe it helps. But i also believe it helps to just give into the pain. I think that most people who live with chronic pain long term would agree its hard work hiding the pain from our nearest & dearest. I think it helps to give into the pain for a couple of days every now & then. Tomorrow its on the bus to go & get some more x-rays done maybe they will show the problem. Thanks anelsen for your advice i hope the deep tissue massage & acupuncture work for you. It's the one thing we all have in common is we are all looking for a solution to our pain.
  • Wow Bundy....sounds like you are going thru similar feelings as me! :( I had my first fusion in 2009 (4 discs - anterior). One of the bone grafts disolved so the surgeon replaced this and refused it postier in 2011. I am in more pain now then I ever have been before! I'm at the 18 month mark and the drugs aren't even helping anymore! Lack of sleep, pain 24/7 (I work sitting at a desk all day) and the depression is aweful....I feel you're pain. I have no desire to return to this surgeon because I feel that doing the surgery thru the back of my neck has caused more damage then good. I have an appointment next week with the neurologist to talk about other options. I honestly can't remember the last time I didn't have pain. I know everyone here has one story or another explaining their situation and the pain they are in and I tell you what....it's good to vent and I'm glad this site allows us to do just that! I wish you the best of luck with finding a solution. God willing...I will be able to do that as well. Best wishes....God Speed.
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