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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
@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.
Replies to "@anthonymg I'm sure this response will be continued over a few posts. Thank you for your..."
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Continued form prior post
"I suffered as never before. I dealt with the worst anxiety ever. It was very hard. But the worst was still to come. "
Anxiety is hard. I had never experienced something like this before that takes over your life. This is your brain trying to protect you by reminding you of something awful from the past, but without telling you what that past experience is. It's invoking the fight or flight response telling you that danger is near. The brain senses imagined danger the same as real danger. I was experiencing anxiety panic attacks because of my fear of spine surgery. That all started to change when I asked myself why I was doing this to myself and began to answer that question.
Anxiety is a clue for something that is unresolved from your past. The questions to ask yourself about anxiety are when in your past and childhood, did you have those same feelings? What was happening then that made you feel this way? Did the authority figures in your life (parents, teachers, family members) believe what you said or did they think you were lying? Did they help you and comfort you during difficult times?
"I didn't expect anything else other than this. So it caught me by surprise. When I left that hospital the part of me that was still alive, just died. And since then I can't function. I'm about 20% of what I was before. And this is optimistic."
You are always welcome here on Connect. I had a surprise too because I didn't expect that I would overcome my fears that had been with me all my life, and that came as a surprise. I worked for it and it was worth it. You can do this too. You must believe that you can succeed because you can.
"So, he gave me his diagnosis, which more or less goes like this. As I have no foreign body and I have these symptoms, he says that I had a severe allergic reaction to the lobster and my immune response attacked my own tissue/cartilage, shrinking my epiglottis in the left side. He seemed convinced. I asked how it could be that the other ENT didn't notice that. He said it was because the other ENT was looking for a foreign body, not an alternative explanation for the symptoms without a foreign body. Which is correct and makes sense."
The doctor is making an assumption that you had an allergic reaction causing tissue damage. He has no evidence to support this belief. A severe allergic reaction can cause the throat to swell closed and block off airways. Did he question you about anything like that? If that was happening, most people would seek emergency care immediately. Did that happen to you?
"I told him that it feels like there's something stuck in my throat and sometimes it seems like I'm going to be able to swallow it. He said that he has another patient with the same problem and the other patient says exactly the same thing. I asked him about the variation in the intensity of the symptoms, which sometimes are more intense than other times. He said that it's like someone who lost a leg. The person will always feel pain in the area of the amputation but some days it is more intense than other days. He told me that I have to accept this as if I had cancer or a stroke and got permanent damage as a sequel. There was nothing he could do. He even showed me epiglottis from other patients which are symmetric. Although I know that an asymmetric epiglottis is not necessarily a consequence of a problem/damage. In a way, I know he lied to me (he also knows that my laryngeal variation is within normal parameters), but I didn't say anything."
You did say that you know that an asymmetric epiglottis is considered normal. Shouldn't it be removed from your concerns? Everyone is asymmetrical even myself. It's OK. That doesn't mean that we are less perfect that anyone else.
I think this doctor does not know what to say and doesn't know why you have symptoms. I don't think he is trying to lie to you, and that would be against the oath they take to do no harm. They are human, and people do make mistakes. When the doctor told you that you had a serious allergic reaction that caused tissue damage and he has no evidence of this, he is doing a disservice to you. It is his theory about what may have happened, but he cannot prove that it is true. He also does not know how that news will affect you.
Continued in next post.