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Frustrated and starting to lose it.

I'm starting to feel like I'm losing it due to this pain. My PCP is trying to help me, she's been great. She prescribes most my medications and changes them up for me if things don't seem to be working well. My PM clinic has great, nice doctors but unfortunately they don't really have much to do with coordinating my care, they only do procedures. The nurse practitioners and physician assistants are the ones who handle appointments and planning the next steps. They have tended to be hard to deal with. They don't have the answers to your questions, they don't seem to take things I say about my pain into consideration, and they are very interruptive if they don't like, agree with, or want to listen to what I'm saying.

At my last visit with my PCP she sent me to a neurosurgeon to hopefully get some better care. The neurosurgeon is great, and he set up a visit with a neurologist (currently waiting on that) and a second opinion with another pain management place (they said my current place is doing fine treatment wise and that despite the issues I have I should stay with them because they are a larger place and have more resources at their disposal). He also scheduled an MRI of my chest to look at the brachial plexus area (having this done on the first).

Now I'm frustrated because I am realizing that all these doctors are still looking at four/five month old cervical MRI images to make their decisions. The images were taken when I was still functioning. I could work full time without too much struggle, I could still take care of myself back then, there was more muscle pain less nerve pain. Now I am in severe pain after the first hour of work and am struggling to put in more than 20 hours a week, my husband has to drive for me, wash and brush my hair, sometimes help me dress, cook for me, cut up my food, etc, and the muscle pain is almost entirely alleviated thanks to trigger point injections, it's mostly a burning nerve pain now. Things are very different now and I'm terrified that decisions of my care are being made based on outdated images. The injection I had in my neck proved that there is definitely a problem with the C7 nerve area.

None of the conservative treatments have been working so I had been hoping that surgery might be an option so that I might have a chance of being able to get back to my career. As it stands now, that isn't going to happen unless someone does something to help me. I'm in too much pain everyday. My old MRI came back as normal, but after further review it does show mild foraminal narrowing at the C6-7 level, which supports the symptoms and the injection confirmation. Seems perfectly logical to me that it could've gotten worse in the past several months compressing the nerve much more than it was before. It also seems to me from all of my research that if foraminal stenosis is the culprit, and all conservative therapies fail, then surgery should be done. I certainly can't live like this....

I'm not very good at communicating with doctors and asking for things without sounding like either an idiot or a genius. The one time I tried to do it intelligently I was reprimanded strongly which kinda knocked me down, even though in the end the appointment did go the way I wanted. (The NP brought a doctor into the room cause she didn't want to argue with me anymore, and the doctor was helpful.) I'm in so much pain everyday I'm going insane and I'm on a perfectly good and logical combination of medications so it's not a problem there. It can't be healthy to go through this though, mentally or physically. What else can I do?
Microlaminectomy and discectomy at C7-T1 on April 26th.
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Comments

  • Eaduby: hi. I think you have explained the issue and your concerns very well here.

    I'm sure that when you go to the neurosurgeon next and explain your your concern about the use of an old MRI that was taken whilst you were able to function, he will be happy to send you for a new one to be able to see a current scan.

    Take care.
  • DaveFusion said:
    Eaduby: hi. I think you have explained the issue and your concerns very well here.

    I'm sure that when you go to the neurosurgeon next and explain your your concern about the use of an old MRI that was taken whilst you were able to function, he will be happy to send you for a new one to be able to see a current scan.

    Take care.
    Thank you for the advice. Sounds so simple a thing to do but it has made me feel better to have some reassurance that it's okay to ask for a new MRI.
    Microlaminectomy and discectomy at C7-T1 on April 26th.
  • rossellaHelprrossellaHelp Posts: 3
    edited 01/26/2013 - 9:24 PM
    Dear eaduby,
    I have read trough your message.I write from Italy I have been suffering pains since 2001 tried everything.
    In italy we discover a valid unique method to care cronical problems.


    Do not waste your time and health around

    Link removed, solicitation not permitted
    Post Edited by The Spine-Health Moderator Team

    take care be faithfull
  • Sorry for being too short but the only thing you need is to read translate and understand then take your decision I am not promoting aything I am just a patient
  • They removed my link I can send you provately so
    as you can see there is a big business in the world so people suffer and they do not really care
    they prefer doing bad things and make the people suffer than taking care of them
    Ciao
    Tiziana
  • Went to the ER today after a slip and fall (nothing serious, landed on my bum) exacerbated the pain even more. After it's just been so bad that even leisure use of my computer at home on the couch is no longer fun, the idea of trying to get through the extra pain after the jar from the bump, and the fact that it was all caused by the fact that my hand didn't do what it wanted to do.....

    They first tried to offer me a 5mg percocet. I declined it, knowing that even 20mg won't even do much for my pain levels, I've been prescribed it before. So after several hours and a student who was assisting the PA assigned to my case came to examine me they finally brought me a shot of 6mg of morphine. Thank goodness finally a bit of relief.

    They did a quick CT of my neck, no contrast to make sure nothing serious fracturewise happened with the fall. Nothing had, good. Then the PA came and talked to me for a long time. He was great! A great listener, very nice, very sympathetic, very helpful. He advised I talked to my doctor about having my topamax dosage increased and gave his opinion on things overall.

    He discharged me with 10/325 Norco. He actually asked me what I'd tried that had worked, talked about what medications I was already on, their effects and usefulness etc, before deciding what to dispense. Unlike anytime before when an ER doc has always just given me whatever they felt like.

    Even though we were there for a LONG time, lots of ambulance patients kept slowing the process down... It was by far one of the most positive ER visits I've ever had thanks to that PA. I actually left in much less pain with the means to be in much less pain for the next week or so. That is the best outcome I have ever gotten. Feeling much better at this moment thanks to it all. :)
    Microlaminectomy and discectomy at C7-T1 on April 26th.
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