Before I start updating my blog again - posting about autumn, the Christmas season and the new year, I am giving you all an update on my health situation.
This is going to be a long one. I'm a bit long-winded. Some TMI involved. Proceed at your own risk.
I have mentioned several times on this blog that I have dealt with throat issues over the years. It has caused me some major discomfort which has led to big time anxiety. I don’t know why I feel compelled to write and share my story now, but I think it is because having an outlet is very therapeutic for me. This is not easy to share, but I'm gonna tell it anyway.
I am not going to lie - I am a person who gets “traumatized” (for lack of a better word) pretty easily nowadays. Especially when it comes to medical stuff. Maybe it’s because I have had a lot of crap happen to me in my life (a lot of it medical). Things that start out as small things “blow up” and become bigger and more complicated things. And I have had some very BAD experiences with doctors. Doctors with crappy bedside manners. Doctors with empty promises. Doctors not believing me when I knew exactly what I was talking about. Doctors giving me misdiagnoses. Doctors telling me they’ve “never seen THAT happen before.”
So...I deal with tonsil stones. Something not often talked about. So not talked about that I didn’t even know what was happening to me when this whole thing started several years ago. I have several small “crypts” or pockets in my tonsils where food/stones can get stuck and I have to remove the stones every so often. It’s not pleasant. It can really irritate my throat when it happens. It mainly affects my left tonsil. My tonsils do not get massively inflamed or infected. I don't have a ton of stones that I have to remove daily. I haven't needed antibiotics for infection since this started. I can breathe and swallow fine. My stones are relatively small. My tonsils are in pretty good shape despite that fact that they have some pockets in them. It’s really more of a very uncomfortable annoyance and anxiety inducer. But for someone who is prone to anxiety, it has ended up consuming my thoughts - especially in the last few months.
Back in the summer of 2016, I had discomfort on the left side of my throat for the first time and had no idea why. I felt like I had something stuck in my gland (it was swollen) but I couldn’t see it. It was so uncomfortable. I went to urgent care and told the doctor that I felt like I had something up in my “gland” and he scoffed at me and said a person can’t get anything stuck in a gland. Well a few days later, I finally discovered a stone up deep in the side of my left tonsil. I had used the wrong term with him. And I use the term "tonsil stone" now (after researching and figuring it out), but at that time I had no idea what was happening to me. I managed to get the stone out with little issue and moved on. I thought about it off and on and would check my mouth once in a while, but I didn’t dwell on it at all.
Fast forward a year to 2017. It happened again. I felt weird on the left side of my throat. But again, my gland was swollen and I didn’t see anything wrong. When you cannot see what is hurting you, it is hard to know what it is really going on. I went to urgent care twice and to my ENT to complain of throat pain on my left side. The doctors didn’t see anything in my mouth either (because they didn't really try to look for anything). It’s awful, but sometimes you have to really search tonsils to find a problem because of swelling. After knowing in my gut that something was there, I finally discovered my problem in the same place as the year before. I wasn’t crazy! I had a very difficult time removing the stones this particular time though. It was scary for me. I didn’t have the right tools (just q-tips). I really messed up my tonsil in the process of getting them out - but they had to come out. I got couple canker sores from the ordeal - and that led to an entire canker sore outbreak all over my mouth. It was horrible. That was the start of my “traumatization.”
I went to my general practitioner asap for some meds for the canker sore outbreak and then went to see my ENT to explain what happened to me. My ENT said it might be a good idea to invest in a water flosser to help clean my tonsils - be proactive. He said to maybe rinse them once a week. He said at the time “You DO NOT want a tonsillectomy.” Those words stayed in my head. I took his advice and actually started rinsing my tonsils every day - at the end of each day. Probably overkill, but that’s how I roll. The good news is that I have not gotten a stone in that particular area of my tonsil again - to this day.
I did pretty well with my situation for over a year. But at the end of 2018/beginning of 2019, I discovered a couple more small stones in couple different places in my left tonsil. Crap - more small pockets. One particular pocket gives me the most issues (my main nemesis). Honestly, this would probably not have been a super huge deal for most people. But for me, it was scary because of my history. I had been being proactive but now it was happening in other areas. These particular stones didn’t hurt me, but I felt I had to remove them immediately as soon as I saw them. I was afraid of what could happen. The removal was what irritated me. And then I went into being even more proactive. I started rinsing and checking my throat much more often as 2019 went on. I think me being overly proactive was probably making my tonsil more irritated - thus making matters worse. I don’t know. But I have no idea what would have happened if I had done nothing either.
So every couple of weeks/months in 2019, I would find a stone in my main nemesis pocket. Driving me crazy. But no matter how much I cleaned the area and had good oral hygiene, it continued to happen. Throughout 2019, I bought a tonsil stone kit with curette, lots of mouthwashes, a magnifying mirror and a bright flashlight. I had everything I needed to tackle this.
Then, I got a bad cold in October 2019. I noticed in early November that I had several stones in that tonsil again (probably due to the cold - I've been reading about how that can happen), but they were more difficult to remove for some reason. Maybe because of inflammation from the cold. The stubbornness of the removal threw me for a loop. I went back to 2017 in my mind. I then started going all super OCD on my throat. I was checking my throat several times a day to check that food wasn’t getting stuck in those pockets. Rinsing and irrigating several times a day. Things got bad. My anxiety kicked into overdrive. My tonsils encompassed my thoughts - because that is what anxiety does.
Since my left side was irritated after several weeks of cleaning and
checking in November, I tried swallowing more on my right side in
December to give my left side a break. And after a week or so, I
discovered my first stone in my right tonsil. Ugh!! So I had to stop
doing that immediately. I was so discouraged.
I finally broke down and made an appointment to see my ENT (I hadn't seen in him two years) - hoping to get some new ideas on what to do. I knew tonsillectomy was a possibility, but I hoped there was something else I could do. I still felt my tonsils were not damaged enough to “rip out.” I had to wait a month and a half to get into see him (because he is so booked up). I chose him several years ago when I had my bad sinus infection because of the great reviews I had seen on the internet. I read he had a great bedside manner. The two times I did go see him, he had been very nice and took time to speak with me. So, I hoped this appointment would be good. I was pretty nervous though. I read the horror (and I mean horror) stories about adult tonsillectomies. It’s something I wasn’t ready to hear (and it is still not).
January finally rolled around, and I made Doug go with me to my appointment in case my anxiety kicked in and to interject if I forgot something. The doctor came in the exam room and sat down to listen to me. But he seemed a little different from two years ago. I had a list written (so I could speak quickly) of what I had been experiencing since I had seen him. I even had a couple pictures! I could tell after three minutes that he became a bit disinterested in what I had to say. He got up and started examining me as I was still talking to him. I was feeling super rushed. He looked in my mouth and saw the pockets in my tonsils (I had no stones at the appointment). He knew I was there for the same reason two years before, so I feel like he possibly had already made up his mind about what he would say even before walking in the room. He pushed on my neck and felt an enlarged lymph node. Not surprising since I had removed stubborn stones pretty recently and I had been overcompensating with irrigation. He decided to order me a CT scan with contrast to be safe. And then he went straight into tonsillectomy talk.
I was kind of surprised he went from 0 to 90 when it came to dealing with my tonsils. The only thing he had ever recommended was rinsing my tonsils. There was no talk of anything else more conservative - especially with the fact that my tonsils had never been infected and that I am in my 40's. I asked about other less invasive procedures that I had read about on the internet, but he didn’t even seem to know what those were. I had questions about the surgery itself, but he started to stand up to usher us out of the room. He grabbed a sheet on post-tonsillectomy “things to expect” and said they would call me to schedule the CT scan. As he handed the sheet at me, he said “this surgery isn’t for the weak” and "think about it." Well, I was feeling pretty weak in that moment. I had waited a month and a half to talk to him. He dropped a surgery bomb on me and shoved me out of his office in literally 10 minutes. I felt like crying - and I did in the car on the way home. I was so angry. I asked Doug if I was overreacting about the appointment. He said no - a surgery discussion should not have been rushed like that.
(On a side note, I ended up having to call the next day to schedule the CT scan because of course they didn’t call me. I waited a week and a half to get the test. I got results 4 days later. My lymph nodes were fine and my tonsils looked clean. Guess that is a good thing.)
I posted on FB about my tonsillectomy dilemma/diagnosis and had a number of people comment. People told me I should “go for it” to feel better. Some shared their own tonsillectomy stories about how super tough the surgery was but that it was worth it in the end. It was very nice that people reached out to give me advice and comfort. But, I have read A LOT about tonsillectomy recovery online. There is a consensus out there for sure - it’s one of the most painful surgeries a person can get. Possible clotting/bleeding, not being able to swallow or breath easily right after the surgery, feeling of swallowing glass, not being able to eat pretty much anything for a couple weeks, intense pain in not just the throat but tongue, gums, uvula and ears, extreme pain to sneeze or cough, temporary loss of taste or bad taste in mouth, intense pain that painkillers can barely touch. It’s all bad. Adult tonsillectomies are just bad.
As a person with an anxiety disorder, I am not sure mentally I can handle a tonsillectomy. And I have tackled a LOT in my life. I lived and breathed fertility treatments for 4 years. I did things to my body that no human should ever have to do to start a family. I have been very brave so many times throughout my life. But I am feeling pretty tapped out in the brave department right about now.
I was so upset with how the appointment went down, I decided to get a second opinion from another doctor. I wasn't going to rip out my tonsils without a second opinion. The second doctor I saw was really great. A bit farther from where I live, but he’s super nice and knowledgeable (had great reviews too). I got an appointment with him in TWO DAYS. He spent about 45 minutes talking with me. He explained a lot of things in detail. He said I could start off conservatively (antibiotics for three weeks to help with bacteria and try a new mouthwash) and if things continued and didn’t change, he could do a tonsillectomy if I wanted. He also concurred that the surgery is really, really tough. But it’s on the table if I want it.
Since my life is crazy right now (including Bri being in her last semester of middle school where she has lots of high school prep going on), taking several weeks off for a tonsillectomy just isn’t going to happen anytime soon (if ever). So since I can’t do a surgery right now anyway, I am going to try some other things first and see what happens. And pray for the best.
I have been on the antibiotics and a new mouthwash for over a week and I am still stone free so far. I am backing off of the incessant looking at my throat. And I am trying a new diet. I’ve researched a ton about how a low carb/low sugar diet with drinking lots of water can help keep stones away. I’ve already been eating differently the last couple of weeks and I’ve lost some weight. So, maybe there is one tiny upside to this whole thing. And my left tonsil is very slowly starting to feel less irritated.
This whole situation has completely exhausted me (and everyone around me). I have got to try to not let this consume my life anymore. I cannot believe I spiraled so badly over this. If I ever do consider surgery one day, I have to make SURE that I am removing my tonsils for true physical reasons and not to just cure my anxiety/obsession over them. I will have to truly “hit a wall” with this for me to ever get this procedure done.
I know this was a LONG post. Thanks for reading. I hope this all doesn’t make me sound too freaking crazy. Let’s face it - I’m a bit crazy. I hope me getting this off my chest helps lessen my anxiety level.
Wish me luck over the next few months. Let’s hope for a relatively stone free 2020.
