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Pain in my neck, head and shoulders, doctors giving up on me?

Just to try to summarize as much as possible, approximately a little over 4 yrs. ago I started having shoulder and neck spasms to the point of not being able to move my neck or arm much for days. I would go through these flare ups periodically and then return to normal. As time passed, they became more frequent until they were almost every other week. I was barely able to do my job. Last year I started going to a chiropractor and started getting help with it. The flare ups continued but I was getting some help with them. The chiropractor ended up ordering an MRI and found that I had a severely herniated disc at C5/C6 that was compressing the spinal cord. C4 and C7 was bulging also but not yet herniated. I was referred to a neuro spinal surgeon and I had surgery to fuse C5/C6 and take the pressure of my spinal cord. SInce the surgery I have had severe headaches and continued nerve pain in my arms and shoulders. I was put on gabapentin and cyclobenzaprine for the pain. I was also put on a round of steroids and referred to PT. I went through months of PT until that ran out in May when my insurance will no longer pay for it. The PT was getting to the end of the treatment with no more ideas anyways. I do my exercises that I am given. I have been seeing a neurologist since January and we have been trying to adjust the meds and its pretty much been trial and error. She added nortryptiline and rizatriptaline a few months ago and recently added topirimate to the long list of drugs that are really not working all that well. I have headaches all day everyday, neck pain, arm pain and my arms, hands and feet are constantly falling asleep, even when I am walking. About a month ago I started seeing my chiropractor with my neurosurgeons blessing with the condition of being extra careful with my neck. Well, Yesterday after having 5 adjustments, my chiropractor told me that if he doesn't see any improvement in the next couple of adjustments, he doesn't see any reason for me to keep going. I just feel like everything is just coming to an end. The neurologist is running out of ideas.
I have a lot of the classic symptoms of fibromayalgia but the neurologist said I was already on the same meds that they would prescribe for it anyways and the tests are expensive. I really am not sure where to turn to or what to do. If I should go to my neuro surgeon again and ask them to look into the pain. Most of the pain is across the shoulders and at the base of my skull. There are several trigger points across the shoulders and pressing at C1/C2 that cause the pain to flair. I am allergic to steroid injections so this seems to complicate things. I think I really need to get an MRI to see whats going on.
Tracie C


  • SavageSavage United StatesPosts: 5,427
    edited 06/21/2015 - 3:13 AM
    Is your neurologist a pain management specialist, also?

    When I saw neurologist for my strokes, he would do nothing for my pain.

    Fortunately, when referred to pain management, my PM doctor is neurologist, so very helpful with my conditions.

    Have you had any nerve conduction tests?
    I had EMG that was most revealing to doctor. It showed areas of my spine that were effected that I never even gave voice to.

    If your doctor is also pain management specialist, have you thought about second opinion?
    Some fresh eyes on you conditions?

    Spine-Health Moderator
    Please read my medical history at: Medical History

  • rtconant1rrtconant1 Posts: 348
    edited 06/23/2015 - 5:24 AM
    It was my understanding that the neurologist would be helping me with pain management also. Sure she is trying to help with the pain in my head but she has been ignoring my neck even though she knows that my neck is almost a direct cause of the headaches. I have not had any nerve conduction tests yet or a pain management doctor. It doesn't seem very common around here where I live. I've thought about getting a second opinion and I am also going to talk with my original neuro-surgeon and ask him to look at my neck again. IF he says no, there is nothing wrong, I will seek a second opinion. I just hope that I can find one in my plan. We have taken a huge hit in medical bills this year already and I don't want to add much more.
    Thank you so much for your insight. It means a lot to me to have you and everyone else here to give me the hope that I can one day be fixed. I don't want to be sitting on the sidelines all the time saying " I can't do that anymore. It hurts too much."
    Tracie C
  • itsautonomicitsautonomic LouisianaPosts: 1,805
    edited 06/23/2015 - 7:01 AM
    rtconant1, i would say you have classic spinal cord damage symptoms not fibromyalgia. Now was fibro a symptom of the damage , maybe but should only be diagnosed when everything else ruled out. Just because you uncompress spinal cord does not mean damage is not done already. I deal with similar issues from spinal cord injury that resulted in central pain and autonomic issues along with small fiber neurapathy. Its unbelievable what just a single impact to a spinal cord can do long term. It actually can rewire your body. I suggest you see a neuromuscular specialist, type of neurologist but much better than typical one. In areas of spinal cord impact to body they are far superior to neurologists, neurosurgeons, PM, etc in my experience and that experience is great and across many different hospitals and doctors. They tie it all together or can rule out issue with cord.
    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 will look into that and see if there is something like that in our area. I am still learning about all these different options
    Tracie C
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