Possible permanent epiglottic damage from allergies or bacteria

Posted by anthonymg @anthonymg, Nov 23, 2021

Hi everyone!

I'm suffering for 12 months now with a problem which is destroying my life in all senses. I've suffered more in the past 12 months than in the rest of my life all together. I'm 41.

This is how my epiglottis looks like (attached image).

Based on this image, I received a theory of a diagnosis which I can't confirm. On the internet there is not literature that suggests this has ever happened to another person before and other doctors that checked my throat have not theorised this diagnosis.

The diagnosis is: while I was eating lobster, a spike of the lobster's mandible injured my throat close to the epiglottis. Through the means of an allergic reaction of bacteria infection (possibly pseudomonas aeruginosa) the immune system had an exaggerated response and attacked its own tissues, deforming the cartilage of the epiglottis, shrinking it in the left side.

As you can see in the photo the epiglottis is smaller in the left (inverted) side.

I was told this is a permanent damage and nothing can be done to treat it or reduce my symptoms. I will have to deal with the terrible symptoms for the rest of my life.

I can get into further details but I don't want to leave a very large post. I can share more details after I get some answers to this first post.

My symptoms can be described like this: when I swallow it feels like the structures of my throat don't match as they used to. Something from one part of the throat does not fit in the other part and that makes me feel a terrible discomfort as well as a soft pain. But as it happens every time and as I even feel the discomfort when I’m static (not swallowing) I can't stop thinking about it. It's always present, although it's worse some days than other days. It is always discomfortable, but some days this sensation of irritation is added and it is even harder to deal with it.

My questions:

- Do you think that an allergen or bacteria from the lobster could have provoked such reaction with damage to the epiglottis cartilage?

- If that was to happen, how painful would it be? Very painful, as with excruciating pain and fever associated, that demanded intake of painkillers? Or could it be a “silent” damage, with just moderate pain?

- In the other attached photo, there is a cyst very close to the epiglottis, exactly in the side (left) where I feel the symptoms. Could it be the origin of the symptoms?

After 9 months of desperation, I had to start taking antidepressants (30mg of mirtazapine). It’s the first time in my life that I take this medication, but even with this, I very anxious and sad about this situation that is destroying my life. Any help would be very important to me.

Thanks and kind regards,

Anthony.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

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.

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. So if it was a permanent damage the symptoms should be stable. 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.

He asked me if I had any previous exams (like a CT Scan) of the neck where we could confirm if the epiglottis was already shorter in the left side, or symmetric. At that point, in that hospital, he had already checked that I didn't have any exam. There could be an exam in another hospital, which I investigated later, just to find out that for a combination of bad luck I didn't have previous exams showing that are. Some end just 1 or 2cm before that area and some have been deleted from databases. This was my 4th great disappointment, not having an exam that could show if my throat structure was already the way it is now, or not. It would make a great great difference to my approach to the problem.

Then I was there already for about 20 minutes and he was like sending me off and it finished there. He heard me saying that I lost about 80% of my quality of life and that it would be hard to live like this and he did not even tell me to set another appointment to a few weeks later to speak better, which is strange. It really felt like maybe he had no idea but he was embarrassed to assume it and so he gave me that theory of a diagnosis just to send me out and get rid of me.

It was the worst news I could get. I felt like a criminal in court room being sentenced to a death penalty. I immediately knew that if he was right, my life was over. I could never live the rest of my life as in the previous 4 months.

I left the hospital, got into the car and phoned my father. My father is not a healthcare professional but he worked his whole life in hospital administration, so he knows a few things and usually has well supported opinions. He told me that it all sounded very strange and that he did not believe that diagnosis. He said he could accept that it could be correct, but the symptoms to remain unchanged for the rest of my life didn't sound correct. The body should adapt in some way with time.

As I arrived home, I talked to a doctor (a general practitioner) whom I have contact with, onlin, and he also told me that it seemed like a very strange diagnosis. A few things didn't seem to fit. He said that if phonation and deglutition were not affected, he didn't understand why the epiglottis was being so taken into account.

That's when I started searching the internet to find other cases like mine. There were none. No cases in the literature. And I'm very experienced in online searching. I can also do it in 3 languages. There was nothing close to that diagnosis. So, I had to check this with another ENT so I scheduled an appointment.

REPLY

->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).

REPLY

-> 4th of October 2021
As I remembered that in 2018 I was in the same private hospital where I started to look for answers, because of a fishbone, and the ENT that saw me that time performed a videolaryngoscopy, I started thinking that maybe, just maybe, that video was still recorded there and my epiglottis could be seen. So I had an appointment with the same ENT that first saw me, the one who only helped me to discard the presence of a foreign body. He checked if the video was still there, but no, it wasn't, it was deleted, and the person who deleted it was the other ENT who gave me the theoretical diagnosis of permanent damage (shrunk in it's left side). This was the 6th disappointment.

You see, all these disappointments got me more and more depressed with this situation. How unlucky can I be? Is this a punishment for something bad I did in life? Because, I'm in a situation that no one else is, according to my searches, no exam shows this area so that I can have an idea about the possible damage (or not) to that area, in coincidence my epiglottis had to be smaller exactly in the same side where I have the symptoms, which is a chance of about 1 in 20... It really feels like it is a punishment, like divine intervention. It's driving me crazy in that sense.

Between the 24th of November and mid December, I was feeling better, softer symptoms and a strong mentality. I thought that maybe a cyst that I found in some video laryngoscopies that I performed to myself (with an usb wire cam) could be the result of absorption or expel of foreign body and could be originating the symptoms. The cyst in the photo of my first post in this thread. The ENT that I saw in October said that it could be, but he can't be sure. He can remove it but he can't assure me that the problem will be solved, which is understandable, of course.

So by then, Between the 24th of November and mid December, I was with a mentality like "I'm feeling a bit better, so who knows if now I will start feeling better and better and, if not, maybe in January or February I can remove the cyst and who knows if my problem is there. After all, it makes more sense than the theory of permanent damage to the epiglottis". So, when I saw the psychiatrist for the 3rd time, by the 7th of December, I told him I was finally getting better, so I kept with the same dose of mirtazapine.

But by mid December the symptoms got more intense again and I started to lose hope again. Since then I've been a mess, very depressed, very exhausted from this situation, with a very negative feeling about life.

Recently I also did another exam, a cintilography of the salivary glands. It says that the salivary glands are fine but there is intense intake of the radiopharmacy by the thyroid gland and suggests further investigation with a specific image study of that gland. But I did blood tests for the thyroid function last summer and all turned normal, so I suppose there's not any problem. And my symptoms are in the upper part of the throat.

REPLY

So, at this point, I consider 4 possibilities:

1 - Permanent damage to the cartilage of the epiglottis and eventual damage to surrounding tissues is correct.

In this case, the theory is as follows:

I'm a very allergic person. I'm very allergic to cat dander, level 6 allergy since 2010, the highest level, which can't even be measured for being so high. I had a cat from 2006 till 2020. The cat died 45 days before this happened. My body immune response was super active because the allergen that it was used to fight for the past 10 years suddenly disappeared.

The lobsters had pseudomonas aeruginosa (a bacteria) or any other rare bacteria. Food safety institutions advise to cook lobsters alive because once they are dead bacteria multiplies very fast. The ones I cooked were left to defrost at environment temperature (around 23º C) for about 6 hours. They probably defrost in just 3 or 4 hours and then bacteria multiplied fast.

I cooked it for about 15 minutes, but we are talking about bacteria that is resistant to the temperature of boiling water.

When I pinched my tongue with the sharp spike from the lobster's mandible, a wound in my tongue open doors to my bloodstream. Then I "sucked" on a lobster's head where bacteria proliferate, and bacteria entered my bloodstream through the wound in my tongue and went to the first place where it could produce damage, the cartilagenous parts of the throat.

Pseudomonas aeruginosa, as you can check at wikipedia, provokes chondritis, which is damage to cartilage. In the internet, there are loads of case reports of auricular cartilage damage from pseudomonas aeruginosa, usually from piercings in the hears that were not performed with good higiene. The cartilage of the hear gets deformed, or shrinks.

This same process happened to the left side of my epiglottis.

2 - The cyst that I have in the left side of my throat close to my epiglottis is the result of rejection or absorption of a tiny foreign body (a tip of a spike) and it's causing my main symptoms. With the other symptoms being the result of excessive focus and attention to the area. Taking off the cyst would resolve the main symptoms and the secondary symptoms would also get resolved as they are not an issue themselves.

3 - It's all psychosomatic and I have a huge psychiatric problem, because being so intense it means that now it's very hard to reverse. And even harder because I can't discard all the other possibilities so I'll never know if it's psychosomatic.

By the 14th of November 2020, I had suppressed feelings and anxiety, waiting for an opportunity to convert into physical symptoms through the mechanisms of psychosomatic disorders. When the spike of the lobster pinched my tongue, I immediately starting looking for symptoms in the throat from an eventual spike lodged there.

There was nothing but my mind played a trick through the subconscient and I started feeling a symptom that was not real. When I finished the meal, the feeling was even more present. It was not real, but my mind developed the mechanisms of a psychosomatic disorder.

4 - Other diagnosis that has not been investigated yet. Or maybe even a mix of the other 3 possibilities. Maybe I have damaged tissues/mucosa and these are the symptoms...
__________________________________

So, considering all this, I have a few questions whose answers could help me a lot.

- Is there any way (exam) to determine if a cartilage, tissue or mucosa has been damaged? Would it leave signs like calcification, necrosis or fibrosis?

- Could it be that a traumatism to the tongue affected a nerve (or other type of tissue) damaging it and there is a connection between that nerve and the throat? Do you know of any direct connection between the tongue and the throat?

- In your opinion, the cyst could be the main reason for my symptoms although then there are symptoms associated which are psychosomatic? Would you remove the cyst?
___________________

I'm sorry for such a long story in so many posts.

Thanks for taking the time to read. Any comment, opinion or advice is more than welcome.

Kind regards,

Anthony.

REPLY
@anthonymg

->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).

Jump to this post

@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.

REPLY
@jenniferhunter

@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.

Jump to this post

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.

REPLY
@jenniferhunter

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.

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Continued from prior post

I actually had a non-Mayo doctor lie to me once. He was a hand surgeon and operated on my hand for carpal tunnel syndrome, but he missed the diagnosis of thoracic outlet syndrome. I had both conditions at the same time. Both of those problems compress nerves and cause some of the same symptoms. I had come back after hand surgery with my hands turning blue and purple and getting cold, and he took my pulse, told me I was fine and accused me of malingering and wrote that in my medical records. TOS cuts off the blood supply to the arms which was making my hands turn blue. Later, I had come to his office about an error on his medical records and saw him back behind the desk, and then he hid and had his staff tell me he was not in the office. He wanted nothing to do with me. I was a reminder that he missed a crucial diagnosis and it was much easier to not have to admit that he made a mistake.

I have also been misdiagnosed about my spine problem that was in need of surgery. Doctors make mistakes. The things that you tell them as a patient can put them on the right track for a good diagnosis or the wrong path. They don't want to make mistakes, but they can't find the right answer if they don't have the correct clues.

I also had a non-Mayo spine surgeon tell me that I had significant compression of my spinal cord that was serious and needed surgery right away. He was very pushy about it, but he also didn't want to answer my questions. This caused a lot of fear for me, and because he was running out of the room, I was left to imagine how horrible it must be to go through major spine surgery. I didn't have any surgical experience to compare it with except the hand surgery, and because spine problems carry risks of paralysis and disability, I just imagined the worst.

There was another reason why this surgeon's opinion caused me to have panic attacks, and it took some digging for me to figure out why I reacted this way. He was the first surgeon to state that I absolutely needed surgery to prevent much worse problems which scared me, and after delivering the terrible news, he just disappeared. It was also then, that I realized that I really had been injured because of a whiplash that happened in a traffic accident years earlier. I had been telling myself I was OK because I was afraid of having a spine problem and the possibility of spine surgery back then. I could not hang onto that belief anymore. That reality brought up my fight or flight response because of an event long ago in my childhood that my brain was assigning in the same category. I had also been bullied as a kid and I feared pain, so as a kid, the doctors were going to do something to me similar to a bully that would cause pain. It was a problem I had for a long time and I would get so scared that I would pass out at doctor's offices. Eventually, I was able to resolve those fears from the past and find resilience. When I finally did have spine surgery at Mayo Clinic, I had conquered my fears and was calm on the day of surgery. I had done a lot of things to help myself along the way.

"He heard me saying that I lost about 80% of my quality of life and that it would be hard to live like this and he did not even tell me to set another appointment to a few weeks later to speak better, which is strange. It really felt like maybe he had no idea but he was embarrassed to assume it and so he gave me that theory of a diagnosis just to send me out and get rid of me. It was the worst news I could get. I felt like a criminal in court room being sentenced to a death penalty. I immediately knew that if he was right, my life was over. I could never live the rest of my life as in the previous 4 months."

Was he right? No! He may have been trying to escape the situation and that is a reflection of him, and not you.
You are not a criminal, but you need to be a detective to help yourself figure all of this out. You do not have to accept as fact, a hypothesis that was offered by a doctor without evidence. He is guessing. It is good that you sought several opinions. I think it is also good that they didn't find serious problems... good news indeed.

I would also like to talk a bit more about myofascial release. My therapist has told me that the body has memories in the physical tissues and fascial tightness. Sometimes patients experience memories of adverse events and become very emotional when those tissues are released. It is a way of working that out of the body and bringing it into the forefront so you can question the reason why the memories are there.

I can tell you from my own experience that I have experienced issues with swallowing. Sometimes I feel like I have something stuck in my throat, and it happens because of tight neck muscles and the diagnosed thoracic outlet syndrome I mentioned that causes one side of my neck to be tighter than the other. Add to that tight neck muscles because of a whiplash over the years and a spine problem, and there are a lot of muscles that pull on my neck. There is also a scar from spine surgery on the front side of my neck, and they had to pull my esophagus and trachea out of the way during surgery to get to my spine. That causes throat pain right after surgery and some difficulty swallowing. It felt like one side of my throat didn't know what to do during swallowing, and it was easy for me to do it wrong right after spine surgery, but it got a lot better fairly soon. I always have a bit of that feeling of tightness or something in my throat if I think about it. The more I stretch the scar area, the better it feels. Surgeries do add scar tissue to the fascia and add to body tightness, so I keep stretching that to keep everything moving properly.

If there are problems with the alignment of the neck and jaw, it can affect the hyoid bone that sits across the front of the throat. This bone is used for swallowing and is very delicate and a therapist will be very careful about hands on manipulations of it. With the stress you are under, it is possible that you could have some muscle tightness that could affect alignment. This is where a good physical therapist and MFR can help. You don't always need to know exactly what is wrong for MFR. MFR will help the therapist get the body back in alignment, and when you start feeling better, it helps emotionally too. There are also things a PT can teach you to do at home.

Continued in next post

REPLY
@jenniferhunter

Continued from prior post

I actually had a non-Mayo doctor lie to me once. He was a hand surgeon and operated on my hand for carpal tunnel syndrome, but he missed the diagnosis of thoracic outlet syndrome. I had both conditions at the same time. Both of those problems compress nerves and cause some of the same symptoms. I had come back after hand surgery with my hands turning blue and purple and getting cold, and he took my pulse, told me I was fine and accused me of malingering and wrote that in my medical records. TOS cuts off the blood supply to the arms which was making my hands turn blue. Later, I had come to his office about an error on his medical records and saw him back behind the desk, and then he hid and had his staff tell me he was not in the office. He wanted nothing to do with me. I was a reminder that he missed a crucial diagnosis and it was much easier to not have to admit that he made a mistake.

I have also been misdiagnosed about my spine problem that was in need of surgery. Doctors make mistakes. The things that you tell them as a patient can put them on the right track for a good diagnosis or the wrong path. They don't want to make mistakes, but they can't find the right answer if they don't have the correct clues.

I also had a non-Mayo spine surgeon tell me that I had significant compression of my spinal cord that was serious and needed surgery right away. He was very pushy about it, but he also didn't want to answer my questions. This caused a lot of fear for me, and because he was running out of the room, I was left to imagine how horrible it must be to go through major spine surgery. I didn't have any surgical experience to compare it with except the hand surgery, and because spine problems carry risks of paralysis and disability, I just imagined the worst.

There was another reason why this surgeon's opinion caused me to have panic attacks, and it took some digging for me to figure out why I reacted this way. He was the first surgeon to state that I absolutely needed surgery to prevent much worse problems which scared me, and after delivering the terrible news, he just disappeared. It was also then, that I realized that I really had been injured because of a whiplash that happened in a traffic accident years earlier. I had been telling myself I was OK because I was afraid of having a spine problem and the possibility of spine surgery back then. I could not hang onto that belief anymore. That reality brought up my fight or flight response because of an event long ago in my childhood that my brain was assigning in the same category. I had also been bullied as a kid and I feared pain, so as a kid, the doctors were going to do something to me similar to a bully that would cause pain. It was a problem I had for a long time and I would get so scared that I would pass out at doctor's offices. Eventually, I was able to resolve those fears from the past and find resilience. When I finally did have spine surgery at Mayo Clinic, I had conquered my fears and was calm on the day of surgery. I had done a lot of things to help myself along the way.

"He heard me saying that I lost about 80% of my quality of life and that it would be hard to live like this and he did not even tell me to set another appointment to a few weeks later to speak better, which is strange. It really felt like maybe he had no idea but he was embarrassed to assume it and so he gave me that theory of a diagnosis just to send me out and get rid of me. It was the worst news I could get. I felt like a criminal in court room being sentenced to a death penalty. I immediately knew that if he was right, my life was over. I could never live the rest of my life as in the previous 4 months."

Was he right? No! He may have been trying to escape the situation and that is a reflection of him, and not you.
You are not a criminal, but you need to be a detective to help yourself figure all of this out. You do not have to accept as fact, a hypothesis that was offered by a doctor without evidence. He is guessing. It is good that you sought several opinions. I think it is also good that they didn't find serious problems... good news indeed.

I would also like to talk a bit more about myofascial release. My therapist has told me that the body has memories in the physical tissues and fascial tightness. Sometimes patients experience memories of adverse events and become very emotional when those tissues are released. It is a way of working that out of the body and bringing it into the forefront so you can question the reason why the memories are there.

I can tell you from my own experience that I have experienced issues with swallowing. Sometimes I feel like I have something stuck in my throat, and it happens because of tight neck muscles and the diagnosed thoracic outlet syndrome I mentioned that causes one side of my neck to be tighter than the other. Add to that tight neck muscles because of a whiplash over the years and a spine problem, and there are a lot of muscles that pull on my neck. There is also a scar from spine surgery on the front side of my neck, and they had to pull my esophagus and trachea out of the way during surgery to get to my spine. That causes throat pain right after surgery and some difficulty swallowing. It felt like one side of my throat didn't know what to do during swallowing, and it was easy for me to do it wrong right after spine surgery, but it got a lot better fairly soon. I always have a bit of that feeling of tightness or something in my throat if I think about it. The more I stretch the scar area, the better it feels. Surgeries do add scar tissue to the fascia and add to body tightness, so I keep stretching that to keep everything moving properly.

If there are problems with the alignment of the neck and jaw, it can affect the hyoid bone that sits across the front of the throat. This bone is used for swallowing and is very delicate and a therapist will be very careful about hands on manipulations of it. With the stress you are under, it is possible that you could have some muscle tightness that could affect alignment. This is where a good physical therapist and MFR can help. You don't always need to know exactly what is wrong for MFR. MFR will help the therapist get the body back in alignment, and when you start feeling better, it helps emotionally too. There are also things a PT can teach you to do at home.

Continued in next post

Jump to this post

Continued from prior post

I think this book may help too, "The Mayo Clinic Handbook for Happiness." It was written by Dr. Sood from Mayo Clinic and it will help you re-examine your thinking and find new ways to understand things and get rid of the stress. I wish I had found this book before I was going through surgery, but I bought it afterward and it's very good. It is a work book of exercises in how you think about things.

https://mcpress.mayoclinic.org/shop/health-and-wellness-books/mayo-clinic-handbook-for-happiness/

Dr. Sood also wrote a similar more extensive book, but Mayo doesn't have that anymore to my knowledge. I have this book too and it is excellent, "The Mayo Clinic Guide to stress Free Living". It was in reading this book that I understood why my strategies for facing my fears worked for me. You can find this book at other retailers.

https://www.barnesandnoble.com/w/the-mayo-clinic-guide-to-stress-free-living-amit-sood-md/1115183416

You can find these books among others by Dr. Sood at his website, https://www.resilientoption.com/
His website has some webinars you can join. He also has online videos and lectures that you may want to listen to. He personally overcame a lot of adversity in his life, and as a doctor is sharing what he has learned.

Clinical hypnosis can also work wonders. I used clinical hypnosis to help me get through my first surgery which was for carpal tunnel. I was really scared, but this allowed me to remain calm and not feel fear going into surgery. That is where the concept of having a “safe place” where you can go with your mind came from in my other post.

Believe me, this is worth doing if you can be honest with yourself and willing to ask hard questions. I actually wrote out a history of what stressful events happened in my life and how old I was at the time. It changed my life completely and that is why I joined Connect so I can help others face fearful. It also helped me see a pattern that my parents often minimized my fears and didn't take them seriously so I was left to struggle on my own. In a way, you then become a parent to yourself when you start looking back to comfort yourself.

What questions can you ask yourself about your life that can give you clues to the source of your anxiety?

Did you have a physical injury in the past from something like a traffic accident or whiplash that could affect the alignment of your neck and spine?

Have you been letting your fears make decisions for you?

What beliefs do you have that may not be valid anymore?

What creative things can you do with your children to have some fun and escape the stressful thoughts?

REPLY

Hi @jenniferhunter !

Thank you very much for taking the time to read my story and for your replies. First of all, even before I read everything you just posted (which I will right now), just a quick word to comment this:

"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."

I know, don't worry. And I would never take anything you say as criticism. I'm very open minded and, most of all, I take people for their intentions, which I'm sure in your case there are only good intentions, so it's all good.

I also understand that you might not have answers to some of my questions, but that's normal, I didn't expect otherwise. In fact, just to have your support and opinions means a lot to me. I'm getting to a point where I need a bit of coaching, because I'm really down and it seems like psychologist, psychiatrist and even the antidepressant are not working anymore. I spent the last couple of days really miserable, crying all the time and very depressed.

I might have a good read to your posts now and probably only reply tomorrow.

Thanks again and kind regards,

Anthony
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REPLY

Quote -> "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."

-> Yes, that is one possibility. The tongue injury is a fact, it happened. The spike in the throat is just a theory. You see, in the first 3 months I even "ignored" the tongue injury. But later I started to believe that maybe it was not a coincidence. Maybe the problem was the tongue injury and probably I didn't even swallow a spike. I can accept this as the most likely thing that have happened, probably about 60% to 40% probability.

Just for now, I already kind of see where you are going. I considered all possibilities so far, so I kind of know, but I will enjoy reading every line and I'm also sure there will be important advice and interesting points.

Quote -> "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."

-> Yes, that is right. I admit to you as I already admitted to myself before, that I truly had reasons to get into a psychiatric failure (disorder) sort of thing. I told the psychiatrist about some of these reasons, that's why he diagnosed the psychosomatic problem so easily. I had both types of reasons to believe a negative outcome that could be happening forever. In one hand I believed I deserved and on the other hand I was going through a stressful and sad time by then. I'll enter into details about this later.

On the other hand, I can also say that what made me believe that the outcome could be a serious problem that would be happening forever was the type of symptoms that I was dealing with. You know, it really seemed like something was being destroyed or damaged. I thought of a foreign body (spike) lodged there because it was what made more sense, but the feeling, which is probably approximately the same feeling I'm dealing with now as I write, is a terrible sensation that half of the throat is somehow "bent". It really felt like something bad was happening there, so I feared it could be permanent damage of some sort.

Quote -> "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?"

-> I have to congratulate you. That's a quite pertinent question. By the time this happened, I was having some difficulty in making my wife see a few "truths". You know, that feeling when you know that something unfair is happening, you show the obvious truth and seems like others don't see it or don't want to see it. That was a difficult phase of my life (not only for that, of course) and I admit that I was accumulating the sort of stress that you address in your questions.

Your paragraph previous to these questions is also quite right.

Quote -> "Isn't is better if they don't find something bad?"

-> But it would be even better if the CT scan detected a foreign body that could be collected with total resolution of the problem. That was my expectation, hence the disappointment. And at that point I was not afraid there could be something bad, it started from an objective cause, whatever it was it could improve with time or always remain the same, but it was more than sure that it wouldn't be anything malign.

So, the result of the exam could bring 2 realities. One, a finding that could lead to treatment. Other, no finding and no answers to my problem. At this point I think I even preferred something considered serious but with treatment, than this situation in which I have intolerable symptoms that remain unchanged for 14 months, with no answers at all.

You see, if right now a random person started to feel what I feel, most people would go straight to the hospital and accept nothing less than resolution before leaving the place. It's so bad that there is a sense of urgency in having it solved. Even the stronger, I don't think no one could ignore this. It such agony and affliction that it connects directly to the places in the mind where anxiety is produced and seems to go hands with hands with anxiety. The problem triggering anxiety. Not the opposite.

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