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Paraganglioma / Carotid Body Tumor Question
Neuroendocrine Tumors (NETs) | Last Active: Jun 30 7:27am | Replies (115)Comment receiving replies
Anyone have this? I found out I have one because we were trying to figure out how to stop my migraines once I get them and can't get rid of them.i get dizzy and my memory keeps getting worse..my migraines came back after 6 months of not having any..i thought I got the dizziness under control but it's back off and on.ive got pain in my inner ear and the pulsing pain that was in my right ear disappeared but now its started in my left ear my neurologist has decided to watch it instead of shrinking because it's too small to risk radiation side effects. Its been a year since I had my last MRI and she said we're waiting til I have symptoms again. I feel like this needs to be done.im not a fan of MRI'S but I wonder if it shifted or something. Anyone have a glomus brain tumor?
Replies to "Anyone have this? I found out I have one because we were trying to figure out..."
I don’t think I will be of much help here but still wanted to respond. I had a neck para. I never had an MRI, only a CT scan and ultrasound. I never did a “wait and see” as surgery was recommended right away. Has this been discussed for you? A friend of mine had a glomus jugular and it was treated with Cyberknife. If you are on Facebook, a great resource is a page called Pheochromocytoma and Paraganglioma Support Group. There is a lot of knowledge there!
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Hi, @kfs - welcome to Mayo Clinic Connect. You will note I moved your post to this existing thread on paraganglioma so that you can connect with others — and their loved ones — with this diagnosis. The issues with your memory, dizziness and pain sound challenging to deal with.
Hoping that here you can meet @cootiesgirl1 @hopeful33250 @sharik @patriciagsr @ristene, who may have some thoughts from their own experiences related to MRI frequency during a watching and waiting period.
Also, here is an overview of paraganglioma from Mayo Clinic that you may find helpful https://www.mayoclinic.org/diseases-conditions/paraganglioma/cdc-20352970.
How has your daily life functioning been with the symptoms you've been experiencing, kfs?