Diagnosed with Carotid Body Tumor

Posted by msmith49 @msmith49, 5 days ago

I was recently diagnosed with a Carotid Body Tumor. I live in Ohio and there isn't anyone that is experienced in my diagnosis. I am told it is a textbook diagnosis that it has only been studied not treated. I went to the Cleveland Clinic and am even more confused than before I went. It is a very large tumor and if it were to grow even a hair it would be extremely more dangerous than it is now. As of now I am diagnosed as high risk. I am having extreme dizziness, extreme pain in my throat, it's hard to eat due to not being able to swallow, and lose my voice at times. I don't know what to do at this point. Do I leave it and continue to get worse or do I have it removed at the very high risk of stroke, bleeding, and more during the surgery? Has anyone had this and had the surgery? Thank you for any help I truly appreciate it.

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gangcarotid1 | @gangcarotid1 | 4 days ago

msmith49,
I was diagnosed w carotid body paraganglioma end of May. Local ENT wanted to do a BIOPSY, which is an absolute NO.. makes these kind of tumors 'angry'. 2-8 people in a million have these. When I heard biopsy, I got myself accepted at Mayo Rochesyer (I researched Cleveland, MD anderson,, univ of Utah, Mass Women's, UCLA, etc. & chose Mayo. my tumor is still small, 1.5 cm, and triage team all said likely benign. Endocrinologist was concerned about symptoms of dizziness, hypertension, etc., so they did full body CT scan, and found 2 tumors on left kidney. Those were successfully removed Oct 14 w good margins. I am not on BP meds anymore! Carotid artery tumor is now back on front burner, and will develop plan this Spring for removal. As they told me, I'm very healthy 68 yr old woman. But the tumor won't get smaller and I won't get younger, and if I was their daughter or sister they'd remove it. As time goes on, my throat often feels like I am getting the mumps and/or strept throat. Headaches are happening; I'm not 1 to get headaches. Will be glad to get going on the Plan for this. If you've already talked to Cleveland Clinic and got nowhere, my PERSONAL OPINION is, I'd get an appt w the endocrine triage team there. Praying for you and wishing you the best. You are the 1st other person I've known of to have this condition besides myself.