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Possible permanent epiglottic damage from allergies or bacteria
Ear, Nose & Throat (ENT) | Last Active: Apr 5, 2022 | Replies (31)Comment receiving replies
->15th of March 2021
On this day I had an appointment with the ENT that is popularly considered the most renowned ENT in the region (a region with 400.000 inhabitants). He said that the diagnosis of damage to the epiglottis made no sense at all. He said that my epiglottis looked normal to him. Usually it's more symmetric but he see's epiglottis with this level of asymmetry all the time.
He gave me a different diagnosis, which unfortunately was not correct, as I didn't improve with his medication/treatment. Nasal corticosteroids, nasal showers with saline water and an antibiotic (Cefuroxime). Another disappointment, it didn't work, not even one little bit.
-> 25th of April 2021
I went back to this ENT and told him that I didn't improve. That day he was in a hurry, the appointment only lasted 8 minutes. He didn't want to further investigate, so he said that it's probably all in my head (psychosomatic). But he prescribed me an MRI exam. I did that MRI exam in one of the most advanced MRI machines, with 3.0 Tesla technology, only to find, again, the disappointment of a normal result. Only a mention to two ganglions which I might have there for a long time and which apparently are not in the same are where I have the symptoms.
-> June 2021
I started email conversations with a (man) nurse with formation in psychology and psychic health. He's been great, he's one of these people that you only find once in a lifetime. Since then he has helped me a lot, we exchange about 10 or 12 emails per month. He gets me great support as a "generosity" act, for free. We didn't know each other (and personally we still haven't met), but now we are friends. He helped me to explore the last gate that I had still opened, the possibility of having a psychosomatic problem.
And I was so optimistic about this. July and August were hard, but at least I had hope. In July I actually went back to the GI doctor and performed the endoscopy to discard any possible problem in the esophagus. It came clear also, the 5th disappointment.
In August I had my first visit with the psychiatrist. I have been seeing a psychologist since late April, with which I had 10 sessions but not much improvement. The psychiatrist said that most likely it is psychosomatic, although it's also true that I went there to tell him that I was getting to that conclusion and shared with him a lot of information that actually acted in favor of that diagnosis.
He prescribed me 15mg of mirtazapine per day (a light dose). By late September, I had a second appointment with him, I was not doing better at all. He raised the dose to 30mg per day (a medium dose).
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@anthonymg I'm sure this response will be continued over a few posts.
Thank you for your very detailed history. I am not a psychologist or a medical person, so I cannot diagnose or prescribe treatment. What I can do is ask questions and challenge your thinking and relay a little bit of what I have learned through my experience and reading some expert advice about fear. I hope that you can look this objectively as I do, and please understand that nothing I say will be meant as criticism. It is just an observation from your words. These are the very same questions I had to ask myself to get over my biggest fears when I needed spine surgery. I saw 5 non-Mayo spine surgeons over 2 years who would not help me because they misunderstood my case, and I learned things to do to cope. Every time I saw a new surgeon, it was a test of my progress in my skills of facing my fears of them. I also had to learn how to advocate for myself.
Our minds have a lot of power, and as much as we can believe and achieve positive outcomes, we can also imagine awful things and believe them to be true. People can beat incredible odds and that recovery begins when you believe that you can do it. This is resiliency, and working toward that helps a person cope with adverse situations. We all carry memories of bad things that have happened, and our brains can sometimes use that information against us.
So would you like to give this a try and challenge yourself? The first step is understanding that you have the power to do this and be willing to question yourself. You can do this if you believe that you can.
Here are some quotes that stood out to me from your words:
"I automatically thought to myself "I must be careful because I could swallow one of these sharp tips and it could get stuck in my throat". One or two minutes after this, I started feeling that something seemed to be already there. So, another two minutes later I finished the meal, and after cleaning my mouth and throat I had a "dry" swallow and thought "Something is not right in my throat", assuming that a tip of a spike got stuck, in the left side."
Maybe you didn't swallow a spike. You were experiencing a lot of pain from the spike that pierced your tongue at this time. Pain can radiate and seem like it is happening in a bigger area than it is and that could have felt like it involved the throat too.
"I had negative thoughts, I admit, I thought from the first day how terrible it would be if I had a problem in my throat for a long time or for life."
This is a lot to believe and accept as fact. There must be a reason that you are willing to believe a negative outcome and believe that it will be happening forever.
"But I decided to be strong and avoid going to the hospital. I didn't even tell anyone about it for the first 3 or 4 days. So, about 2 weeks passed and I was expecting it to go away, like a few years earlier when I had a fishbone in my throat and it went away by itself in about 10 days. But 2 weeks later it was still giving me symptoms and I decided to make an appointment with an ENT that I visited some years before for other reasons."
The prior experience of the fish bone in your throat was remembered by your brain, and when your brain heard about the lobster spike, it assigned that problem into the same category of an adverse stressful event. It's an automatic reaction because of the prior experience that your brain recognized as a familiar problem, so it didn't stop to question if this was actually true, because your brain believed it was the same issue and must be true.
Has there been a time in your life when a person of authority did not believe you when you were telling the truth? Do you feel like you always need to have the answers?
"In the ENT, he did a videolaryngoscopy and found nothing. The 1st disappointment."
Not getting an answer can be disappointing, but it can also be wonderful if the results of a medical test rule out a bad problem that you wouldn't want. Sometimes a medical diagnosis is a process of elimination and looking at alternative issues that cause similar symptoms. It just means that they don't have an answer. It doesn't mean that you didn't experience pain or other symptoms, it just means that the doctors do not know why.
"I was very very worried that the exam could say that no foreign body was detected. And so it happened, nothing there that was visible in the exam. The 2nd disappointment. "
Isn't is better if they don't find something bad? Your brain can feel pain from memories alone. I experience this because of my past fears of pain. Also, I can actually feel pain that happens to other people just because they tell me about something and I can imagine it. I have to give allergy shots to myself and my husband. If he reacts because it hurts, I feel the needle in my arm when it isn't really there.
Continued in next post.