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neurofibromatosis tumors disease

  • By Jeanene

    My twin sister& I fight daily wt this very physically& emotional pain disease. .we have a VERY rare form of this tumors disease that we were born wt& I am fed up wt ER staff that treats me as a drug seeker! I fight daily to stay active& healthy. .I work& stay fit& have outlived my death date by 13 yrs..but when my meds don’t help& I’m in puking pain I avoid the hospital because of the way I’m treated! Even though I’ve had brain spine surgery& over 30 surgeries removing painful tumors. .they still say..I’m a complex case& push me out the er & say go home& take your meds..DHHH. .y didn’t I think og that u @$$! Y am I here if my meds are doing awesome! While in pain I can barely breathe or speak they treat me inhuman! I have several stories that could be taken to court but I just want to have respect if I go to the er..once a year or even once in 2 yrs I have to go to er& that makes me an addict! I can tell u stories that are soo inhuman& cruel..if you know how I feel I am here to talk..ty..God bless you all!

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  • By Ellen Schnakenberg

    fed-up-tumors-disease,

    Believe it or not, I actually know someone with this. It is a difficult diagnosis to be sure. Do the tumors contribute to your Migraines? The person I know with it doesn’t have Migraines. Thankfully, this person has never received anything but great treatment. This makes me feel even worse for you.

    We have several links that may also be helpful for you if you ever find yourself needing to go into the emergency department again…

    Why does the Emergency Department treat me like a drug seeker? https://migraine.com/blog/why-does-the-emergency-department-treat-me-like-a-drug-seeker/

    Tips and tricks for a successful Emergency Department visit https://migraine.com/blog/tips-and-tricks-for-a-successful-emergency-department-visit/

    Migraines From an ER Doctor’s Perspective https://migraine.com/blog/migraines-from-an-er-doctor-perspective/

    An ER Doctor’s Perspective: Strategies for Migraine Relief https://migraine.com/blog/an-er-doctor-perspective-strategies-for-migraine-relief/

    Migraine & The ER — A Follow-Up Interview https://migraine.com/blog/migraine-the-er-a-follow-up-interview/

    I’m so very sorry you had to experience this. Next time you may want to consider bringing someone else with you. When you have an advocate to help you, you are much less likely to be mistreated. Also, bringing a recording device with you is also helpful. It won’t stop staff from thinking nasty thoughts, but it will at least help to keep them from verbalizing them or mistreating you. If you need an excuse for the recording device, often stating it is there so you remember everything properly is enough to put staff at ease. This makes it much easier if you find the need to report unruly staff to hospital management, which unfortunately is not a rare occurrence I’m afraid.

    You are not alone as you’ve probably realized many Migraine patients are treated very poorly in the emergency department and with their doctors. Hang in there, and try hard to look at this as an opportunity to educate staff so that other patients won’t receive the same abuse you have endured.

    ~Ellen

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