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Anyone have all of the cervical issues w/o any muscle weakness?

 I have been reading through all of the forums and I feel so much better knowing that I am not going crazy.   I have had three cervical fusions in the last five years (Jan 2011 c5/c6 dec 2011 c6/c7 and march 2016 c3/c4 with revision of 6/7 nonunion) and I am in as much pain and discomfort as ever !
These forums have made me feel somewhat normal. Here is my big question though...
Does anyone have all of these symptoms but not have muscle weakness? I do well in PT. I seem to be strong but still have all of the pain, tingling, numbness (including shins and feet), muscle spasms, tightness in upper arm, base of skull headaches, etc that everyone is talking about. PT massages feel good and I have even had Graston Technique which hurts so good, if that makes sense ( guess they thought part of my problem could be muscle). 
 The chronic pain is maddening and I've always been very active so I feel like a prisoner in my own home at this point . Don't hang out with friends as much because I am not very good company these days!
 I can't sit for too long. I can't stand for too long. Most days, at some point, I am laying on my living room floor, bypassing the couch even. 
I go into doctors office and they go through the little tests of you pushing up or down or sideways against their hands and spreading ur fingers while they  try to close them, etc.  and then they say "Yep muscles look good" "MRI looks good" "X-rays look good" Yet I am still in so much pain!!!! 
 I joke about taking references (i.e. employer of 24+ years, friends, family) into my doctor to explain the kind of person I am in real life. That I am not just there complaining or making up my symptoms.
I did recently have a NCS and  I am waiting to hear the results from that. After five years of chronic pain I am ready for a true diagnosis.  Let me know if anyone has any other suggestions I am willing to do just about anything at this point !!!!!


  • boolordboolord Posts: 8
    edited 07/07/2016 - 7:49 PM
    Hi DebbieM,
    I too know that feeling; "do they think i am insane or making this up?", and also thought about a character reference.
    I don't like to talk to people much either at the moment...i cringe at times when people ask me how i am going. I always used to say "good" seems too complicated at the moment.
    All my issues began in July last year (2015), and i had to really push to get taken seriously. One Dr even wrote in a comment "pain out of proportion to....."
    I was in agony, and even ended up in hospital in the middle the night 'twice'. At one point they even thought i was having a heart attack. Everyone kept saying "oh...it's just muscular skeletal, you'll be back to normal in no time". This is while i am walking around with my left arm in the air because for some reason it seemed to help lol.
    It was a physiotherapist who picked up that i may have a disc issue at C6/C7.
    Soon after that i was booked in for surgery, an ACDF... and my arm pain went away.
    I did have weakness in my left tricep, but only the Neurosurgeon picked up on that, i did not even realize it at the time. I had no numbness, my primary issue was pain.
    As of now i still have pain (not like then), so i am looking at getting another MRI.
    Another physio thinks i may have an issue at C4/C5, so i am going to push to get it looked into.
    I did have an epidural and facet injections on monday so i am going see how that pans out first i guess. 
    All the best.

  • Bruce EitmanBruce Eitman Akron, OH, USAPosts: 1,510

    Welcome to these forums Debbie and Bollard, this is a great hangout for those of us who really aren't crazy.

    After my first ACDF, I knew that something was still wrong but I gave it a year and a half to heal.  Then my PCP referred me to a sports Dr who is focused on finding the root cause of problems.  It didn't take long to find that I had another disc bulge, and not much longer to have my second surgery.


    Read my story at Bruce - My Story
    ACDF C4-C5-C6-C7, and getting better every day
    It has been a process of healing, learning, exercising, and resting - and figuring out when to do which.

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  • Hey,
    I have not had surgery, my specialist says I am not a good candidate for it due to multilevel degeneration among other things. However over the years (diagnosed 2013) I have had the muscle weakness they want at times and then during good times, I have had the debilitating  pain with no muscle weakness . I do respond well to physical therapy and try to stay active. Good luck
  • maehaleymaehaley PennsylvaniaPosts: 322
    I too have chronic pain but whenever the doctors test my muscle strength and reflexes they are always good. I was originally diagnosed with tension headaches about 4 or 5 years ago but an now seeing a Neurologist and waiting for my insurance company to approve an MRI of my neck to see what may be causing all the pain and tightness that I constantly have, even with narcotic and muscle relaxer. I am convinced that there is something wrong inside my neck because I should not be in this much pain and discomfort all the time for no reason! Hoping to get a diagnosis so my family and PCP do not think I am a crazy drug seeker. :)
  • dilaurodilauro ConnecticutPosts: 13,526
    With your previous surgeries, did they not give you a formal diagnosis of your condition?

    But it sure sounds like based on your comments that you are not doing well.  Its almost as if you are a prisoner in your own body in your own house.

    I think we can all relate to your comments about not being able to spend time with friends, you cant stand or sit too long.
    I think at this point you do what a doctor to step forward and say  Debbie, this is your problem and this is what we are going to do about it.

    Some times, this entire spinal problem situation takes time... Many times longer then we want it to be....

    Stick with us here and while we cant take away your pain , we can try to relate to your situations and help that way.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • Hi! I feel your pain, literally!! I have had two neck surgeries in the last four years and have three levels fused c-4to c-7. I have neck pain everyday and wonder just like you, is this going to be my life? I started having numbness and tingling in my right arm and hand that comes and goes, so my surgeon orders an MRI and everything looks good!! What?? So he orders a EMG to see if something else is going on, that appointment is next week. I know it's my neck!! It sounds like you have done everything possible and you are not alone. It is so depressing to think that at 42 this is going to be my life!! You do feel crazy sometimes and you wonder what the doctors think about you!! Once you have just one level fused, you are putting pressure on the disc above and below and your chances of herniated those disc are high. Also, I was weened off of the narcotics, for the second time, and they put me on gabepentin and my pain Doctor pretty much diagnosed me with Fibromyalgia. The med doesn't help, nothing seems to help!!! Good luck to you and hope you feel better soon!!! 
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