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Hi - I'm not my diagnosis

HannahSHHannahS USPosts: 32
edited 01/24/2017 - 10:19 AM in New Member Introductions
Hello - I'm hoping to find kinship here by others who have BTDT and know what it's like to live with constant pain. I was rear-ended while I was at a complete stop; other car didn't brake at all and probably hit me around 40 mph. I hit the back of my head on my headrest, and my seatbelt (I drive a newer SUV) cinched up tight on impact but no airbags, $6k damage to my car's rear end. I walked away (drove away actually) from the scene after being cleared by paramedics, don't remember much but feeling like crap after I left. My doc says now I was in shock, I though it was just the adrenaline of the accident.

I started on the usual - neck X-ray showed nothing, waited to see ortho and my own doc. Ortho started me on muscle relaxants, anti-inflammatories, and PT. Waiting. Then my constant headache, neck, shoulder and back pain became right upper arm pain as well. I developed numbness and coldness in my fingers, eventually also occasionally my toes and my right sciatic nerve. When things got bed, the pain would shoot down my arms and my right back would spasm. My dull headache would become a sharp pain at my temple and then shoot across my head like lightning.

My doc said it was dermopathic pain related to C6/7 and C7/8; ortho kept changing meds, ran a course of steroids, and ordered MRI. MRI showed small annular tear and bulge at C5/6 and small vertebral subluxation (out of alignment) at C5. Ortho said tears even small are painful and that we'd just have to try a bunch of things until we hit it right. No explanation for increase in symptoms.  PCP sent me to a neurosurgeon - who wouldn't see me because he "doesn't do" MVAs, but sent me to another (same) who sent me to a third, who was a jerk and a creep - said it wasn't surgical (duh) and do a hard cervical collar for 8-12 weeks and see his chiro. No thanks. This was completely opposite of what everyone was saying to me, and the last thing my back and neck needed was a good crack. 

I called my uncle, a noted retired physician who used to run a major research hospital that is top 3 in the US. He said, as I thought, increasing neuro symptoms are not good, why am I seeing ortho, I need neuro. He got me in to his hospital two days later with a neuro who diagnosed me as cervical radiculopathy, myofascial pain syndrome, and occipital neuralgia. He recommended that I stop PT if it was hurting (it was) and worsening symptoms (it was). He started me on a low dose of neurontin, did trigger point injections and a bunch across shoulders, back, neck, and head. First time I had no headache in 6 weeks. He suggested I get an EMG and see someone near me to do the injections.
10 weeks to get EMG and constant fight with docs to get everything just so. Symptoms better after playing with Lyrica and then going back on neurontin high dose. I start acupuncture out of desperation. EMG was normal, referred to physiatrist and pain management. Great - pain management at last! Nope. Physiatrist wouldn't even see me (not sure why - murmurs of rehab wouldn't help me yet), finally in desperation PCP gets me in to pain management. I see PA, he says epidural, I'm fine, let's go. I get a desperate call later that week saying he talked to doc, case is more complicated, doc needs to see me, no more detail. I'm freaking out now.

Yesterday I see pain management doc - he asks me why I think I'm having pain since my MRI and EMG don't explain it. I said I agree - I thought that was his job. I mentioned something rather bumbling about muscles impinging nerves or something that the neuro expert had told me. He recommended aquatic therapy (I said I hadn't been able to swim because of my arm pain and he made a dismissive gesture and a "bah!"), upping my neurontin (800mg 4x/d), stopping acupuncture since it wasn't having much of an effect, and seeing another doc for another consultation on my headaches for botox injections. I walk out feeling once again that this is all in my head and I'm making it up and what the heck am I doing? I see my PCP later this week, I called a friend who went through similar issues, talked to my therapist and I realized:

1. I'm all alone in managing this even though I have a great PCP
2. I do not need anyone on my medical team who doesn't believe me
3. I do not need a pain management doctor who will a. not prescribe my pain meds, b. not prescribe the percocet I take when my back is seizing or my pain is untenable (about once every other day if I'm careful)
4. Pain management should be all encompassing including trigger point and other injections (which he rejected out of hand). I do not need referrals to referrals for consultations for possible treatment and then another referral, etc. 
5. I need someone who will come up with a plan (or follow my expert neuro's plan!) and execute it!!!

Sorry this is long. I have a lot of my own issues this brings up - like feeling that something isn't real unless it's on a scientific test, hating to ask for pain meds because doing so makes me feel weak (and not taking them makes me feel proud and strong - stupid I know), and feeling ashamed of my underlying depression (which is ok) and eating disorder (which was, and now isn't). 

So that's me. I'm also working full-time as a professor (I have to teach in a chair!), raising two young kids, caring for my terminally ill father who has Alzheimer's, and managing a house and marriage and the rest of life. 


Please refrain from making almost identical posts.  You mad another one called Strange Pain Management visit.  It is bascially identical to this one.   I suggest that in the future you combine this information into one discussion.  Now that you have two, you will get two different paths of responses, plus potentially confuse the member community.
--- Ron DiLauro,  Veritas-Health Forum Manager


  • SavageSavage United StatesPosts: 7,270
    edited 01/26/2017 - 1:55 PM
    hello hannahs !
    many of us here understand the frustrations of trying to find the right doctor who will help.

    i repeated my story each time i went to my primary doctor, who was trying to work with my pain for two years.
    and to the er staff as i also had more than my share of visits to the er to stop the uncontrollable and crazy making pain.

    my primary realized er was not to be supplementing my care and she then referred me to pain management doctor.

    i am fortunate that my pm doctor will prescribe medication, as he continued to test me to discover my spinal issues.
    but i do know in my area, there are some pm doctors who will do epidural, but no..or very limited...pain medication.... and or other medication.

    unfortunately, that means continuing to look for pm doctor with the right fit for you.
    we know how difficult that can be and doing it while in chronic pain certainly doesn't help.

    while you are waiting for responses from members with shared experiences, the search may be helpful to you, upper right on page.
    typing in your concerns may lead you to current or older discussion.
    you may also be led to medical side with articles and videos.

    and i totally agree with your heading. ...you are not your diagnosis!
    stay strong in advocating for yourself to receive the care you need. 

    please click on link for helpful information!
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

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