I posted this in the tonsillectomy chat as well, but then thought it was even more important to have in here!
I got my tonsils out yesterday due to some reoccurring tonsillitis and tonsil stones but I have been on this journey for about two years. I would like to share my story in hope of reaching someone who may feel discouraged because of mis diagnosis. Sorry in advance this is a little lengthy!!
Two years ago I got my first tonsil stone and didn’t think much of it. After that I was followed up with swollen glands on my throat 24/7, sinus headaches and ear aches. I also got sore throats but not the typical ones, just ones that hurt to talk only. I never rlly experienced strep or getting sick often though.
I went to THREE different ENT and got an endoscopy and everyone said LPR and acid reflux. To give you a little background on me, I’m 5”2 I weigh about 100-110lbs, in 23F and I am a VERY clean eater. I don’t eat anything processed and stay away from sugars. I even asked about tonsil stones and they told me they didn’t see any? I was very discouraged by this diagnosis cus I couldn’t even rlly change my diet much cus I was already eating clean. I struggled with this for two years and went on omeprazole for a few months and it ultimately made it worse. I also have insanely good oral hygiene, like flossing, tongue scrapping, brushing teeth all the time, oil pulling, salt water rinses, nothing helped.
I just started to live with this because every time I went to the doctor I was so discouraged and upset leaving with another misdiagnose. I felt so unseen and so unheard. I think another issue was up until a few months ago, I could never see any tonsil stones I just felt like there was always something stuck.
Recently in February/March it got too much and I started to find stones, I mean I would fine like 10 a day. And they would hurt. I was so self conscious and even felt insecure with my boyfriend of years bc of my breath. I went to a new ent and told him abt my stones and he told me I could get my tonsils out if I want and told me all the risks and the extreme recovery. I agreed and scheduled the surgery for two months out. During the time in between my flare ups of stones did reduce and I wasn’t seeing them as often but I was still having some discomfort. I started to doubt the surgery and if I really needed it bc it is a long recovery. I decided to go through with it.
Yesterday afternoon after my surgery my ENT came in my room and told me it was one of the worst cases he has seen. Said I had so many tonsil stones on both sides along with damaged scar tissue bc of how long this has been going on for. Beyond that I was having an infection I was essentially fighting off for years.
Yes this recovery isn’t the best, but I can say FULL heartily this was the best decision I made for myself. If you are dealing with doctors that aren’t listing to you and you know in your gut there’s something wrong m, trust that. It’s so hard to find the right doctor and to stay determined but it is your health and it should always be heard. These tonsil stones are no joke and they are definitely a good reason to get your tonsils out. The pain, the self consciousness, the side affects, it’s not worth it for me. I hope this helped someone!!