Just diagnosed with Glomus Jugulare Paraganglioma Tumor: Advice?

Posted by saylor479 @saylor479, Jan 2 9:30am

Currently I'm at the Mayo Clinic in Phoenix. I'm newly diagnosed and with a large paraganglioma. Any information this type of brain tumor would be much appreciated. Thank you.

Interested in more discussions like this? Go to the Brain Tumor group.

I have a brain tumor a paraganglioma, that causes me to be nauseous and dizzy. How would one even approach a medical professional at the Mayo clinic or at my pain management Dr.? I am so scared of asking because when I asked my previous pain management dr about it he before my diagnosis, by the way, it took 4 years to get a brain tumor diagnosis with all the symptoms including massive headaches, and he old me if I use Any Marijuana he would drop me from his care. I have been taking nausea meds foe over a year .
How do you askabout it without sounding like a drug addict?. No offense.

REPLY
@saylor479

I have a brain tumor a paraganglioma, that causes me to be nauseous and dizzy. How would one even approach a medical professional at the Mayo clinic or at my pain management Dr.? I am so scared of asking because when I asked my previous pain management dr about it he before my diagnosis, by the way, it took 4 years to get a brain tumor diagnosis with all the symptoms including massive headaches, and he old me if I use Any Marijuana he would drop me from his care. I have been taking nausea meds foe over a year .
How do you askabout it without sounding like a drug addict?. No offense.

Jump to this post

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?

REPLY
@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?

Jump to this post

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 . 🙃

REPLY
@saylor479

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 . 🙃

Jump to this post

I'm glad to hear that you are in the care of brain tumor specialists at Mayo Clinic AZ. I hope they can make you comfortable for daily radiation. Do let them know about your neck pain and scoliosis as well as your anxiety and nausea. The radiation technologists and radiation therapists will make you as comfortable as possible.

REPLY

I have have let them know but it seems to fall on deaf ears.
Frustrated!

REPLY
@saylor479

I have have let them know but it seems to fall on deaf ears.
Frustrated!

Jump to this post

Not feeling heard is frustrating to say the least, Saylor. You might consider talking with someone at Mayo's Office of Patient Experience. Here's how to reach them:

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

REPLY
Please sign in or register to post a reply.
  Request Appointment