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Does anyone have a glomus brain tumor (paraganglioma)?

Brain Tumor | Last Active: Apr 17, 2023 | Replies (18)

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@lisalucier

Hi, @kfs - you'll note I moved your post on 2nd or 3rd opinions on glomus jugular brain tumor here to this discussion entitled "Glomus brain tumors (paraganglioma)," as you've posted here before and it's helpful to keep information on similar conditions together.

Sounds as though you are feeling you are getting conflicting information on whether you have a tumor or not, and if it was there, how it might have disappeared.

Hoping some connect members such as @hopeful33250 @ashley5423 @ginette55 @spudlk @jenniferhunter will have some thoughts for you on whether tumors might just disappear. As far as a new MRI and being claustrophobic, @jimhd may have some advice on that.

Are you looking at a new MRI at the same medical center? Or, are you going to another one to get a second opinion? Alternatively, is there a nurse who works with the neurologist you most recently saw to get some help in interpreting what was said to you?

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Replies to "Hi, @kfs - you'll note I moved your post on 2nd or 3rd opinions on glomus..."

I went to a new neurologist who says he looked over my MRI from over a year ago and a ct scan from even longer ago and he said to me he doesn't understand why my previous neurologist got everyone all worked up for no reason and then looks at me and said ur cured from ur tumor..I was wanting another MRI period. Even if it shows it's gone then that's great but moving on to why these symptoms still exist..so I went back to my family dr and told her I want another opinion from another neurologist. We went over everything and she decided to send me to a oncologist since if they test again they would be the one I'd end up at..I'm glad she believes that I need clear answers and not double talk by this dr and ent and the other dr I saw at the cancer center