← Return to Just diagnosed with Glomus Jugulare Paraganglioma Tumor: Advice?

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@colleenyoung

Welcome to the Brain Tumor group, Saylor. What a journey you've had - four years to get the diagnosis of Glomus Jugulare Paraganglioma Tumor. I'm inviting fellow members @jls77 @kfs @mrruttinger1, who also have experience with this type of tumor.

You mentioned that you are at Mayo Clinic now. Is this your first time at Mayo? What care plan has been suggested? Were you able to talk to them about pain management and controlling the nausea long-term?

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Replies to "Welcome to the Brain Tumor group, Saylor. What a journey you've had - four years to..."

Yes this is my first time at the Mayo AZ. I have an outside pain management Dr. Because the Mayo pain management department doesn't want to take my case and they believe that I am to young to be getting Radio Frequently Abrasions, (RFA's) I've been getting them foe years. They seem to be the only thing that works to keep my pain at a level that I can take less pain meds. Why is it that Dr.s always want to reinvent the wheel? Aside from the brain tumor, I have chronic pain from a couple injuries. In my low back neck and now scoliosis. They all want to take yiu off your pain meds and try all the same tests previously performed tests and meds, before deciding that my problems are not solvable, then put me back on the regent I was on. , and try to make me feel like im an Addic by brow beating me up with intimidating me! I have done tons of pt,about 4 years of it, , acupuncture, non narcotic pain meds steroids, chiropractic, PTSD treatment,
Lidocaine shots that was really stupid,, on and on. I have all my records and documents to show they already failed.
I have not spoken with my pain management about trying medical cannabis yet but I will next week. I have so much nausea that I have to take nausea pills every day.they seen to stop working now and I am at my witts end.
I also start radiation 5 days a week for 5 week. In a few days. My Nerou Sergon at the Mayo said my tumor is to big and hypervascular to operate now so it must be shrunk. So now I have massive anxiety about being even more nauseated than I am right now as well as possibly more pain . 🙃