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Has anyone had a tonsillectomy with having MCAD?

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LorraineR
LorraineR

I was diagnosed with Mast Cell Activation Disorder last year. I have been suffering for over 10 years with the frustrating symptoms. A huge part of my problems is my throat. Everyday I wake up with a sore throat and get tonisillitis every two months. I also have tonsil stones which I believe is causing most of the problems. My ENT doctor recommends that I have my tonsils removed, but i am really scared to do it because I have been to the ER three times this year with a swollen throat. Has anyone else had this problem? And if so, did you get your tonsils removed?

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  • cindy65527
    cindy65527 LorraineR

    Posted

    hello lorraine ...sorry to hear that you're having so much trouble. i have mast cell leukemia and mastocytosis. i had a total dental extraction this year which thankfully went pretty well except for some bleeding and low hgb following. my suggestion if you proceed with surgery is to read the article https://www.mastocytosis.ca/en/treatment/surgery-and-anesthesia . i provided this to the surgeon and anesthetist prior to my surgery so that they could anticipate any complications that might occur. even minor surgery can be a big deal .

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