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Praying for answers after MANY tests!

Haven't been on here for a while, but I have more questions then answers it seems! After 3 neck surgeries (4discs fused - C3 thru C7) I have been in more pain for the last 2 years then ever before. SEVERE neck, shoulder, arm/hand pain!! I'm seeing a new ortho specialist and he is covering all his bases. I've had another MRI of the neck, full body bone scan and waiting for an MRI of the shoulder and another EMG. The bone scan determined that I now have some degeneration of the C7-T1, which might explain some of the pain and I also have ulner nerve damage, but waiting to see the extent of that once I have the EMG.

I'm so sick of tests and even more sick of this chronic pain! (I'm sure many can relate). I have been on percocet and neurontin for a very long time, but I think I've built up a tolerance to the percocet so the doctor is trying a high miligram of vicoden which I will start tomorrow.

When I read posts of people suffering like me and reading how their mind takes them to extremely dark places, I totally get it! If it weren't for my family and a couple close friends, I could honestly see just saying f**k it and checking out! But....I am praying that after all these tests, I will finally have an answer and know what path to take to get to the point where my pain is manageable so that I can live a somewhat "normal" life.

For all that are suffering like me, may God bless you and help ease your pain even if its just a little :)



  • i've learned over the years with chronic pain that a positive outlook, and keeping busy are the best tonics for me. eventhough it is a struggle to get up, i do and i go to work and i come home and try not to think about it. easy to say but once you get into it, it really helps. i've had numerous back surgeries but i don't let it get me down.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Thanks Jon. I too am trying to lead a somewhat "normal" life. I get up, go to work....sit at a computer (which, by the way is AWFUL for necks and bad backs)!! I even go to the gym 3-4 days a week and struggle thru swimming or riding the bike. I don't remember that last time I didn't have pain. I just have to try to believe that there is a light at the end of the tunnel and God has some sort of plan for me.
  • One of the biggest things that we all need to learn when it comes to managing chronic pain, or acute pain for that matter is that we all have to learn to make adjustments to how we are doing things that worsen the pain or increase it. If you are having neck problems, then doing computer work with your neck constantly tilted is not the best option. It might be that you need to look into new methods of performing your work or moving your monitor into another position so that you aren't constantly bending your neck or tilting your head to accomodate the screen. Moving it to a higher position might help to eliviate some of the pain .
  • dilaurodilauro ConnecticutPosts: 9,846
    edited 06/06/2013 - 2:14 AM
    the pain is there, all the time, so its a matter of adjusting.

    Easier said then done. For many of us, we know that we are not going to return to that self we were before any spinal surgery. But, again, as we get older, many of us cant return to our younger days, surgery or not!

    You learn to accept the fact that you are going to be on medications for a long time, some for life. You understand that there are going to be harder days than others. Chronic pain takes us on many roller coaster rides.

    Everyone has the key ingredients that is necessary to continue with chronic pain. For me

    • - Support from my wife and son and daughter (they are 35 and 38 and they still give me total support),
      - A good amount of stubbornness, I would not give in to chronic pain
      - Always maintaining a positive outlook, especially during the harder times
      - Almost never talking/complaining about my situation, so many others have it much worse
    I am sure there are more for me and more for others. You will find your own way to understand your medical situation and take it on head first (though not with your neck) You will always find support here. Oh, and I am sure you will also find some tough love here. We always look to help those that are trying to help themselves.
    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 gotta say.....I hate this vicoden and am asking the doctor to put me on something else. All this medication does is make me want to sleep! Tomorrow is my EMG and the follow up with the Ortho doctor is on Thursday. We shall see what he has to say. As far as adjusting goes.... I am using en ergonomic chair that my company paid for and have already adjusted my monitor so that I do not have to bend my neck (this has done nothing to reduce the pain). Sometimes, no matter what you do....the pain will be there so you just have to accept it and hope to manage it the best you can.
  • terror8396tterror8396 Posts: 1,832
    edited 06/17/2013 - 9:51 AM
    its funny you mentioned the ergonomic chair. i have about 10 accommodations for work and as i was being evaluated they person stated that my district buy me a chair, $500 more or less. my principal had a hissy fit but she had to do it. when it was delivered it disappeared and she had to put out a warning to give it back. i got it back and it helps a lot
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • kc
    one more thing about chronic pain. i wake up every night with this stupid leg pain, right leg. i also have pain in my right butt cheek and across the middle of my back. i have had 4 fusions and the last mri i had, last year, the dr said there were not disc herniations or stenosis involved. it feels exactly like stenosis and a herniated disc, but i think my nerve in my right leg is so screwed up with so many fusions and the stress on the nerve that it will never get better just worse, now i also get cellulitis infections all of the time and have to take anti-biotics and water pills. even with all of this, i still put it in the back of my mind and not let it bother me. i think over time, one gets used to pain in a weird way and just accept it and not let it become the center of my life. i will retire after next year, but i still will substitute teach to keep busy and to make extra money. our district lets us sub and pay our insurance even with my medi cal and my wife's insurance. i don't know if this is encouraging to you but i think that over time you will learn to live with chronic pain better. so try to do what you can, and if you work, keep working and keep active with your family and friends.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • aaron
    i can catagorically say no i have not figured it out. i don't have the answer to living with chronic pain and i don't think anyone does. i believe i learn to live with it. it is there everyday but i learned to put it in the back of my mind. i know one thing at least for me, on one wants to hear me complain about my pain, especially at work. they feel if it is that bad then retire, but i don't want to because working helps me and i enjoy teaching. if i did figure out how to live with chronic pain, you would see me on tv pimping my book and making a million dollars. we all have our ways of dealing with pain, mine is to work, not complain and keep as active as possible. yes i go to disneyland, drive to san diego, 5oo miles, go to the beach, etc. i do it because i enjoy these things and pain will not keep me from enjoying life. i don't go to dark places because that is the way i am. i am a glass half full type of guy. i have always been positive. it is nothing i have learned to do, it is just the way i am. i would not know what to do if i went to a dark place. i can't say because ti does not happen to me. but like i said before, to keep out of the dark place, i keep busy and i rule the pain it does not rule me. it is not the meds either because after a while ones body gets used to the meds i is like taking aspirin to me. that is the way meds are supposed to work and i have on my own reduced my dose after talking to my doctor. i am just giving out advice what works for me and like i said i do not pretend to have any answer to chronic pain. it is trial and error process and after a while one learns what is best for ones self
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Lili_InuLLili_Inu Posts: 633
    edited 06/18/2013 - 8:03 PM
    I just have to say that being positive all the time is not even possible. Jon, if you say that you have always been positive, I have a hard time believing this. Aaron, you need to stop apologizing for your comments.

    Post edited by the Spine Health Moderation Team
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • aaron
    it is not figuring it out. i think by dealing with chronic pain for 12 years, one just gets used to it and it does not bother me as much as it did at first. when i first had it, i could not even walk to my car or get in the seat. i had to stop off the freeway because it was too painful to drive. i was taking the same amount of meds then as now but i think in a weird way,one grows into accepting the pain. it just does not bother me as much as it did. i still mention to my wife if my pain woke me up and she just says yea then i drop the subject because after 12 years she gets it also. i know some have had it for years also and it still is an issue but it is not for me anymore and i don't know why that is. but i am grateful
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • aaron
    i showed my wife the post that i sent you and she had an interesting thing to say. if she responded all of the time to my pain i would perpetuate my pain. by ignoring it on her part, it is not perpetuated. she also has chronic pain with chrones disease and it is really bad at times. she comes in and says her temp is 101 but i say i am sorry and then go back to what i was doing. so her and i will complain but in a way that we do not perpetuate the pain. she has horrible pain and also works. she rarely takes time off because we need the money, the same with me. this has happened over the years and i guess we just get used to our respective pain. even my son will ignore both of us and does not want to get caught up in it. he is pretty good and helps us at times, puts on my shoes, helps mom with her chores. so it is a family thing at the time. and over the years the three of us have helped us out in a weird way, we kind of acknowledge others pain but then go back to what we were doing. i don't know if this explains things but it works in our household
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • i just to say to myself well here we go again and hopefully it works. i had to take an on line class right after my surgery last summer, autism in the classroom and paid $900 to take it. so as you see, i was too busy to even think about my pain except for the part i e-mailed you about, pain in my leg. doing this for 6 weeks really helped and took my mind off recovery. i had to wear a brace and that was the part that was worse for me not the pain. it was a plastic clamshell brace and very uncomfortable. then school started so i did not have time to think about it. after i did some classwork, i was too burnt out to think about pain
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • The problem with your thyroid may be contributing to why you had difficulty concentrating. Other conditions on top of our chronic pain makes it more difficult to 'bounce' back if you know what I mean.
    As for having more difficulty making the adjustments after a secondary injury, I had a harder time after my second surgery, especially when things continued to spiral downhill.........it just felt like it wasn't getting any better, it was worsening by the hour, instead for many months......but kind of like Jon now, I acknowledge those days, but then get on with it, because I don't have another option. My family still relies on me to get done what I need to get done, and somehow I do.....some days it is easier to make those adjustments and deal with what is, and others, not so much, and some anger and resentment can creep in but I won't let myself feel badly for too long because it gets in my way..if you understand what I mean....
  • Test results are back. Looks like I have pretty severe ulnar neuropathy and will have surgery on August 5th. Doctor said he is "hoping" that will relieve some of the pain in my neck & shoulders. I will be saying prayers that this helps and wouldn't mind a few from others :)
    In the meantime....I have gotten a new ergonomic keyboard at work (one that hooks to the desk and comes out towards you that has the capablities to adjust up & down). Also...got off the vicoden and back on percocet. No more triptolene (sp) and take ambien at night to help with sleep.
    Thanks for all the helpful comments and suggestions! Blessings to all :)
  • let me add....

    I've already had three surgeries on the neck and if the ular surgery doesn't work, my doctor wants to send me to a University of Washington specialist to get a second opinion on the neck. (crossing my fingers that I won't have to).
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