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I have been in pain for more than 6 years. It started in my neck and it has grown.

I have been dealing with pain for the last 6 yrs or so now. It started in my neck and shoulders. I had  fusion surgery almost 2 years ago at C5/C6.  After the surgery, I started having excruciating headaches which I now treat with a number of prescription medications. I also take medications for nerve pain. Other than Aleve, I don't take anything for the pain because they don't think I need it. My neck has not gotten any better, I now have added issues further down my spine in my lower thoracic area and my lumbar spine. I have gone to a chiropractor that doesn't touch my neck, but can't help me any longer, I have gone to PT who no loinger is helping me either because they want to save some sessions incase I need it down the road this year and they feel I need some work done. I started seeing a physiologist and he refuses to do another MRI on my neck because it didn't show anything to worry about a year ago. I have locked vertebrae at my T12 that he says that is rare to have a problem there. He is only willing to look at my lower back. I believe there is something wrong with my whole back from neck to tailbone but if I can't get someone to look into it, there is no way to know. Should I press the issue or should I trust him for now? After being blown off so many times by doctors, I don't know who to trust anymore.
Tracie C
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1

Comments

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

    Tracie

    I don't know how you trust a doctor who isn't helping you.  One of our members recently mentioned something about headaches and muscle tension.  That is something to discuss with your doctor - could it be caused by muscle spasms on your neck?

    Bruce

    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.

  • Hi Tracie,
    I can understand how frustrating this must be for you- feeling pain and not being believed adds insult to injury.
    I am not a doctor (nor is anyone else here), but from what you describe it sounds like you may have something called TMS (Tension Mytosis Syndrome) described by Dr John Sarno. This is of course, not a diagnosis- just a suggestion. One of the manifestations of this syndrome is real pain in an area not necessarily afflicted  by actual pathology (The pathology is somewhere else in the body) and the pain can be compounded by frustration.
    The diagnosis is not widely accepted, and many think its hokey- but it does apply to many people and Dr Sarno claims to have alleviated pain in hundreds of patients whose 'regular' doctors didn't take them seriously.
    You can research TMS on the internet, and I suggest  (again, I'm not a doctor, just a regular patient like everyone else here) ) you try and find a doctor who is open to discuss TMS with you and try it to alleviate your pain. 
    Good luck,
    David Cohen
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  • Thank you so much David. I am going to take a look into this. I am willing to look into everything ( except botox. LOL).  I was thinking I had fibromyalgia for a while and I don't know if I do as well. My neurologist wasn't believing it at first but then he changed his tune after a while but doesn't do much to help besides load me up with medications.
    Tracie C
  • Bruce,
     My headaches are completely related to my neck. When my neck pain is at its worst, so are my headaches. We are at a loss on treating them. Most people won't even touch my neck. I wish I could afford to just go to a MRI place that does cheap ones and have one done in the other areas that are needed just to prove a point. Don't know what it will prove though if it doesn't show a problem. I'm starting to think holistic medicine doctors may be the next step
    Tracie C
  • Hi Tracie.
    You said that you're doctor will only look at your lower back (lumbar). Have you had an MRI of that area? I can relate to how you feel about your whole spine because that's my problem also. I had a 3-level ACDF in 2008 and two years later had to have a 1-level L4/5 fusion surgery and two years after that another lumbar fusion at L3/4. I now need another surgery from T-11 to L2/3 but I won't have that done until my spine becomes unstable. All my spine doctors have said surgery is not to relieve the pain but to stabilize your spine. So they keep me as comfortable as possible until then (oops, sorry to rant there...)

    Anyway, I understand your frustration and think it might be possible that if your doc starts investigating the lower spine, maybe he'll see something that will make him take a better look at your cervical. And then again, you just might need help with your lumbar spine.

    Take care of yourself.
    Cath
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  • Cath,
    I need help with my whole spine. LOL. The area of concern in my lower back is because of my sciatica issues that can be debilitating when I am trying to work. When I had the cervical disc herniation, I had myelopathy and I had thought for the last year or so that it was related to my sciatica. I have issues with hinging in my midback, neck that I cant turn from side to side and arm pain from it. It also causes daily migraines. For a while after surgery, I had a brief relief from the neck seizing up but now its back again.
    Tracie C
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 08/20/2016 - 6:35 PM
    As someone with a history of health issues and many people who tried to tell me I had TMS I have to disagree with that diagnosis.  First off think in your life if you have ever met a person who has it in all your medical issues and travels?  I am pro alternative , but I have read his book and any person who recommends no matter what your MRI says if you want to run, run and don't think about the pain, I look at much of his advice as scary.  Nothing against the man, but the reasearch does not support it and taking the advice against your drs orders can be detrimental to your health.  That said I am very pro alternative, conservative treatment and there was alot of good qualities about the book and his mindset in treating pain even if you disagree with TMS as a diagnosis.

    What people wanted to tell me was TMS was actually spinal cord , nervous system damage and nerve damage in real life.  Not to harp on the advice David I agree reading his theories is a good thing and can help.  Just use common sense when it relates to the individual, because you do have a documented issue in your spine.

    Also fibromyalgia can make you have pain up and down the spine, but do you have pain elsewhere?  If its pain in just spine that does not fit with the old diagnosis criteria for fibromyalgia, but I think it may with the new criteria.  But fibromyalgia should be a diagnosis of exclusion and many things need investigating before ruling on that.  Have you had a spinal tap to look for infection?  Full spine pain that would be something I wanted to rule out before I accepted a fibromyalgia diagnosis.  I also was diagnosed with it early on, but it was pure BS and was a lazy doctor grasping for a diagnosis without merit.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • I have pain everywhere. Spine, arms, legs, random shoots of pain that makes me think that the pain is nerves miss firing. Some days the weather plays into it, other days all it takes is moving too fast in one direction. After an EMG last year I was told that I have entrapped nerves in my elbows and carpal tunnel in both wrists and that the nerve issues in both elbows warrant surgery. I didn't go through with it because I didn't believe that was the problem. The problem starts in my spine. I have never had a spinal tap done and no one has even recommended doing one either. I had a brain scan done a year and a half ago and they said that there were slight changes in white matter but didn't further explain what that meant or did a repeat. I looked it up myself but I kept getting hits on worst case scenarios. I have daily "chronic migraines" that are not actual migraines. Add in getting hit in the head last year by a overhead door that malfunctioned at work that caused a mild concussion but it wasn't diagnosed until much later after I continuously complained to my neurologist about having ripping headaches at the site of the hit. I had an MRI 2 days before the incident happened so I had reference to what my neck looked like before the accident but only x-rays from the neurospine surgeon after. Apparently I should have " an extremely strong neck" because of my fusion.
    Tracie C
  • I'm not thrilled with TMS as an all around diagnosis for everyone with pain- I have a CT showing s1 digging into my nerve, and if someone told me the pain was TMS I'd probably shoot him (Or not,as I can't bend down to open my gun safe).
    I also remember that when I had problems with  C3 C4 C5 maany years ago, (which were alleviated by spinal blocksand being "hanged" at the physiotherapy clinic- an amazing treatment I highly recomment to anyone with spinal-neck problems)/ Back then   I had debilitating headaches. I've also had the tingling that Tracie described, and it drove me crazy.
    But pain that appears in areas with no obvious pathplogy could be TMS, and its worth checking out- especially if the pain is concentrated around the spine or tyoical of spine-related problems. I'm not saying to discount other possibilities (and I really hope Tracie doesnt have fibromyalgia)- but its worth looking into.
    Tracie- Hang in there, let us know how you progress (If you don't mind)
    Good luck
    David C

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    David what is the hanged treatment? I have never heard of that , is it inversion?

    Oh ok I was thinking just spine based, but that makes something like fibromyalgia or TMS more possible I guess.  But If you feel originates in spine do not give up on that theory unless proven otherwise. Tracie have you had spinal cord issues in past or discs impinging spinal cord?  I had false piositive EMG saying carpel tunnel also and doctors finally agreed was probably a neck issues after having several that didn't match results.

    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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