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Anyone have a paraganglioma?

Neuroendocrine Tumors (NETs) | Last Active: Jul 25 3:44pm | Replies (54)

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Profile picture for taracronwall @taracronwall

@gangcarotid1
wow! amazing you had it resected was it a carotid body tumor? I have a carotid body tumor on left neck but stemmed from a parapharangeal skull base gangioma. I also have a lump in my right neck which was called a 2B lymph node on scans but it was written off by my radiation oncologist at Mofftt as a salivary gland, blahblah, its not her neck. Its gotten bigger from mm to cm's and my oncologist at Florida Cancer said not right and I should be watching all of my thyroid nodules because they are growing. Im not sure what Shamblin class I'd be but Im thinking at least a III because it bifiurcates the carotid and the jugular and it stems from the skull base which I understand can make it difficult and put you at risk for strokes and hemmorhage unless the tumor is embolized first which is I guess how they establish if they will embolize or not, wonder about a cerebroangiogram first to determine what ischemic changes have happened in the brain as mine have shown to have many changes. I hope Dr Hinni Can get the tumor removed and get some in the skyll base without moving my mandible and also get the suspicous other tumor(which could be a billateral carotid one as 30%of people that have them have them on both sides) and if there is little collateral damage Id be a happy camper to not have to worry about these every day of my life. Also those that have had surgery have your symptoms subsided at all??? Mine are tipping over hitting my head a lot, migraines, heartbeats in my ear, swooshing, painful tinnitis swelling throbbing diffficulty swallowing and choking on food, numbness in my left arm and 3 last fingers my concentration is for shit and my memory is going and its enough to make me a little battty as these symptoms some come and go and people say "oh you look fine like nothing is wrong with you!" :{

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@taracronwall
Thyroid is what controls your mood, and can be a instigator of depression, worry, anxiety, irritability. At my recent annual physical I discussed this w my PCP...it was difficult; I cried...but I had my husband sitting w me for moral support. My dr upped my anti-depressant. That was 9 days ago. Not sure if its made a difference yet, but I haven't been as irritable. And Im sleeping better; not waking up with a billion what-if's thundering through my mind.