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Arguing about diagnosis? [UPDATE: 1-3-13]

eadubyeeaduby Posts: 100
edited 01/03/2013 - 9:37 AM in Neck Pain: Cervical
So over the past couple of days I've been researching like crazy and reviewing my MRI images because my diagnosis from pain management of Myofascial Pain Syndrome doesn't really line up well with everything I'm experiencing, and the therapist who did my recent PT eval strongly disagreed with it and called it a "we don't know what it is so we'll call it this" diagnosis.

Well I think I've found the answer. Cervical foraminal stenosis. All of the information I have uncovered about this diagnosis lines up well with what I am experiencing. When I went over my MRIs I found imaging supporting this being the case and affecting the C7 nerve root, which would also line up with my symptoms.

My question is, what is the best way to bring this up to the doctors? I want to be heard. I know that there is a chance I may not be right but I am quite confident in my findings and definitely think that it is worth looking into. Do I bring it up to pain management? My primary care? Go back to the orthopedic spine doctor that referred me to pain management after my MRI was normal? Any advice is appreciated!

1-13-13 UPDATE:
I had my pain management appointment at eleven this morning. The way my PM clinic works is for regular appointments you see PAs and NPs and then you see the MDs for your procedures and testing. So the NP (the same one I always see) comes in and I tell her how the aquatic therapy has aggravated my pain drastically and how I'm upset and angry that they are diagnosing it as a muscular problem but both the physical therapist and the er physician disagreed. Then I tell her how I did some research and took a look at my MRIs and start to tell her about how I believe that at the C6-7 there is narrowing in the neuro-- and she interrupts me right there and starts talking about how my films were read by a radiologist and I am not one. I interrupt and ask her to at least look at the images I have brought, she refuses and I push and she says she will have it reread by a radiologist.

Then she starts to act like she is going to end the appointment and I am *not* okay with this since at this point with my condition I am in such a bad state my quality of life is down the tube and my career is starting to go down the drain. I tell her as such and she says "I can't give you narcotics without a reason." Never once did I ask for narcotics, suggest them, anything of that sort.... I am incredibly upset and I explode crying and yammering on about the pain and this and that I can't do and how my life is. She kind of freaks, says "I'm going to go get a doctor", and leaves the room.

She returns with one of the MDs that I haven't met before and I tell her right away that I don't care whether they give me narcotics or not I just want help. She asks some questions about my pain, and with my answers she each time confirms that they are related to the C7 nerve root... Then she says that we can up my nerve pain medication (Topamax) and that I can have a diagnostic nerve block to see if the C6-7 is causing the problem. So on Tuesday I am going to get the nerve block! Quite happy about that. If nothing is found from the nerve block or the reevaluation of the MRI then the doctor said I will be getting a bone scan as the next diagnostic step.


Microlaminectomy and discectomy at C7-T1 on April 26th.
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Comments


  • Have you got, or could you get a copy of the MRI report?
    That would probably mention C7 nerve root compression or something about stenosis of the foramen.
  • eaduby said:
    When I went over my MRIs I found imaging supporting this being the case and affecting the C7 nerve root, which would also line up with my symptoms.
    The report does not state finding any "significant" narrowing. Otherwise I probably wouldn't have to fight this diagnosis, but I'm not an idiot, and while I am saying there is a chance I could be misled... I know how to find out how the condition looks on an MRI and then I know how to go through my films to see if I find any comparable images. Which I did.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
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  • DaffydolphinDaffydolphin Posts: 98
    edited 12/31/2012 - 9:59 AM
    Two MRIs did not support my pain patterns, only said things like "mild & minimal" in the areas a problem should be in. Second surgeon ordered a myelogram with contrast CT. These images showed moderate to severe neural foraminal stenosis on left side at two levels that perfectly matched up with the shoulder and arm pain patterns that I had been reporting. At least now the doctors are not pushing me to try things that were aggravating my problems or just useless. This surgeon's practice is associated with a med school hospital. PM doc supported my traveling to this surgeon because he believed me and suspected the problem as now diagnosed. Both PM and Surgeon said basic X-rays and MRIs can miss a lot.
    C3-C7
    Severe DDD, Severe neural foraminal stenosis at 2 levels, moderate canal stenosis at 2 levels, significantly impaired left shoulder & arm function. Chronic moderate compression fracture at C6.
  • eadubyeeaduby Posts: 100
    edited 01/01/2013 - 2:55 AM
    Thanks for sharing Daffydolphin. A lot of what I've been reading in my research says the same thing that a CTM is more likely to catch the foraminal stenosis than MRI. I'm just praying that everything will go well at my appointment with PM on Thursday and they'll pursue this testing.

    What are they doing now for treatment of your condition?
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • DaffydolphinDaffydolphin Posts: 98
    edited 01/01/2013 - 6:03 AM
    Good luck with your PM this week. My previous PM tried and could not get my BCBS insurance to approve the myelogram and ct. I've still got 3 more months before I go on Medicare. Had to go thru the Surgeon to get CTM approved.

    My treatment is just careful and limited exercise (walk a lot), I use a cervical traction unit at home, plus opioid use increasing as required to keep me at a 4 to 5 pain level. All surgeons, PM and PCP agree that the extensive surgery indicated would have somewhere between 0 and 15% chance of significantly improving my overall condition, and a 50 to 75% chance of making my life significantly worse. So, no surgery until it becomes an immediate medical necessity, and maybe not then. Overall condition which includes being almost 65, having blood pressure and other cardiac issues influence these decisions. PM sees me monthly and the surgery practice checks me at least every 6 months.

    After years of trying all type of beds and pillows, I now sit and sleep comfortably in an expensive zero gravity recliner. It has a swing out table surface for reading and using my iPad at comfortable postures. On many days I can sit, watch tv, sleep, etc. with a little ice and minimum narcotics and be at just a 2 to 3 pain level.
    C3-C7
    Severe DDD, Severe neural foraminal stenosis at 2 levels, moderate canal stenosis at 2 levels, significantly impaired left shoulder & arm function. Chronic moderate compression fracture at C6.
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  • eadubyeeaduby Posts: 100
    edited 01/01/2013 - 10:05 AM
    I can not sleep in bed either, but I am considering getting a sleep number bed soon because I really miss sleeping next to my husband. I currently have to sleep on the couch to avoid waking up in significant pain.

    When my first physical therapist tried traction it did help a bit, and when I had my eval with my new physical therapist it was obvious that stretching my neck in that manner relieved some of the pain. I am on the highest dose of tramadol plus flexeril, cymbalta, meloxicam, lidoderm patches, and topamax and am still in considerable pain a lot of the time. I ended up going to the ER on Saturday because it was unmanageable and all of the doctor offices were closed. They gave me percocet which actually helps and brings the pain down to a dull ache and mild pinching/shooting pains, but everyone I'm seeing (PCP & PM) wants to refuse to give me these kinds of medications since there's no abnormalities in my MRI report.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • I can understand the PCP shying away from schedule III and II pain relievers. Hydrocodone (Vicodin Norco) is more effective, less likely to create strong physical dependence, and generally safer with less side effects than tramadol. I would suggest asking your doctors about your combination of high doses of tramadol plus flexeril and cymbalta. That is three SSRI type drugs and substantially increases seizure risk and development of what is called Serotonin syndrome. The flexeril could be changed to another muscle relaxant that does not potentially negatively react with the tramadol and cymbalta.

    You can also ask for an EMG nerve test. That is usually easy to get an insurance okay based just upon your pain symptoms and is often covered by your copay. It will show any permanent nerve damage, buy may or may not show intermittent problems. If all else fails, start over with a new surgeon and new PM referral. You deserve answers and help.

    In answer to your original question at the start of this thread, most PMs don't diagnose. If an orthopedic spine doctor is not helpful, look for a neurological spine specialist/surgeon.
    C3-C7
    Severe DDD, Severe neural foraminal stenosis at 2 levels, moderate canal stenosis at 2 levels, significantly impaired left shoulder & arm function. Chronic moderate compression fracture at C6.
  • Daffydolphin said:
    In answer to your original question at the start of this thread, most PMs don't diagnose. If an orthopedic spine doctor is not helpful, look for a neurological spine specialist/surgeon.
    That is interesting because they are the ones who decided to give my problem the MPS names. I am definitely planning to ask PCP about seeing a neurosurgeon when I see her next week, I think that would be my best bet.

    Thank you for the advice on the medications, that is a concern that I will have to bring up. And lastly I did have an EMG and it was normal so I'm assuming there is no permanent damage yet, the pain hasn't been severe for too long, and the tingling/numbness does come and go so it makes sense.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
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