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) group.

Hello Anthony, and welcome to Connect. What I can suggest that you may want to try is Myofascial Release with a physical therapist. Sometimes swallowing difficulty can come from tight muscles in the neck that affect the throat. There is a bone called the hyoid that sits across the front of the throat and is used for swallowing. It can be pulled out of alignment from spasms in neck muscles. I do a lot of MFR work and I have had swallowing issues and felt like I was choking before because of the hyoid. My jaw also gets overly tight and even pulls on my teeth. My PT works on that. Here is our discussion on MFR. Look at the beginning pages for lots of links. There is a provider search at https://www.mfrtherapists.com/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
What do you think about MFR? Does it sound interesting?

REPLY

@anthonymg, in addition to Jennifer's reply, I'd also like to bring @billcomiskey and @lainey into this discussion. They have experienced issues with their epiglottis and may have some thoughts about your situation.

Anthony, have you sought a second opinion?

REPLY

Hi Jennifer and Colleen,

Thank you very much for your reply, it means a lot to me. Yes, I know it has been a while. After I posted here, I then had 2 or 3 weeks with the symptoms in a more bearable state and I tried to just forget about all this. But since mid December it all came back and I have been suffering a lot, physically and emotionally, as it has been one year and two months and I'm already a mess emotionally. Can't function with this problem.

Replying to your messages, first of all, my first post is just a small resume of my problem and all the stages I've been through, or else the post would be too long and I would risk that no one would ever read it.

@colleenyoung Yes, I have second and third opinion. The other two ENT's that I visited say that the theory of permanent damage does not seem to make much sense for them. But they were in a hurry to call for the next patient, so they didn't investigate any further to find answers.

@jenniferhunter Thanks for your advice. I don't think my situation could improve with MFR but I will have a look at it.

I already did a few exams that came out all clear. CT scan, MRI, neck ultrasound and endoscopy.

Maybe that cyst is the result of trauma from the foreign body, as if the body rejected or absorbed the foreign body and the result is that cyst. Maybe inside the cyst there is a tiny piece of foreign body that is not visible in the images of the exams for some reason. Or maybe I damaged to the mucosa.

I'm so tired of all this. I'm the father of 3 small girls, one with 9 and two with 2 (twins) and they are the only reason why I keep struggling, but I just feel like giving up. The last 14 months were a constant nightmare and I can't deal with the idea that I might have to live like this forever.

When there is damage to the cartilage, is it possible to confirm the damage by analysing the cartilage and look for necrosis, calcification, fibrosis, etc?

As a last note, Colleen, I contacted @billcomiskey by private message and he was very kind to answer my question about the epiglottis. He says that after the wound healed he never had any pain or discomfort. That's one more reason why I doubt my epiglottis is damaged. If this was the case, after 14 months, the symptoms should have subsided already. The pain and discomfort that I have in that area might have a different origin, like the cyst or damage to the mucosa.

Thanks again. This time I promise I will be around and reply very fast.

REPLY
@anthonymg

Hi Jennifer and Colleen,

Thank you very much for your reply, it means a lot to me. Yes, I know it has been a while. After I posted here, I then had 2 or 3 weeks with the symptoms in a more bearable state and I tried to just forget about all this. But since mid December it all came back and I have been suffering a lot, physically and emotionally, as it has been one year and two months and I'm already a mess emotionally. Can't function with this problem.

Replying to your messages, first of all, my first post is just a small resume of my problem and all the stages I've been through, or else the post would be too long and I would risk that no one would ever read it.

@colleenyoung Yes, I have second and third opinion. The other two ENT's that I visited say that the theory of permanent damage does not seem to make much sense for them. But they were in a hurry to call for the next patient, so they didn't investigate any further to find answers.

@jenniferhunter Thanks for your advice. I don't think my situation could improve with MFR but I will have a look at it.

I already did a few exams that came out all clear. CT scan, MRI, neck ultrasound and endoscopy.

Maybe that cyst is the result of trauma from the foreign body, as if the body rejected or absorbed the foreign body and the result is that cyst. Maybe inside the cyst there is a tiny piece of foreign body that is not visible in the images of the exams for some reason. Or maybe I damaged to the mucosa.

I'm so tired of all this. I'm the father of 3 small girls, one with 9 and two with 2 (twins) and they are the only reason why I keep struggling, but I just feel like giving up. The last 14 months were a constant nightmare and I can't deal with the idea that I might have to live like this forever.

When there is damage to the cartilage, is it possible to confirm the damage by analysing the cartilage and look for necrosis, calcification, fibrosis, etc?

As a last note, Colleen, I contacted @billcomiskey by private message and he was very kind to answer my question about the epiglottis. He says that after the wound healed he never had any pain or discomfort. That's one more reason why I doubt my epiglottis is damaged. If this was the case, after 14 months, the symptoms should have subsided already. The pain and discomfort that I have in that area might have a different origin, like the cyst or damage to the mucosa.

Thanks again. This time I promise I will be around and reply very fast.

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@anthonymg Anthony, I had a bump on my inner lip that looked very much like the bump in your picture. Mine was from accidentally biting my lip hard a few times (enough to puncture it) and it developed scar tissue and got even bigger and became what they call a fibroma. Of course, since it was in the way, I would catch it and bite it every few months or so. I lived with that probably at least ten years and just tried to avoid biting into it. I was going through some major dental work with an oral surgeon in the last couple years for dental implants and I had him remove it. That likely won't happen again because the new front teeth don't make contact with the lowers which is to prevent putting pressure on the implants.

Honestly my teeth have been a problem most of my life. I was only 9 when I fell on my face and broke them, and for most of my life after that, I had ugly teeth that I couldn't hide from anyone and I had deep fears of dentists and doctors. The trauma from that event caused a cascade of stainless steel caps, braces, bonding, root canals, crowns, bridgework to replace crowns, oral surgery for failed root canals, extractions and dental implants, and now for the first time, I have front teeth that look nice. It took 55 years, and now I am free of those old problems. No one can tell that my teeth were made in a lab. I know, and I actually worked in that same dental lab years ago, and it's OK. They are not exactly the natural teeth I had, and no one can bring them back. The new ones are just different. I spent some time looking at other people's teeth and noticing how very different and imperfect they can be. I had perceived other people as having nice teeth and mine were always ugly, and I had to tell myself it was OK to have different teeth. They do look nice.

Perfection is something that is hard to define. Most people are somewhat asymmetrical and even internally there can be differences in placement of organs and vessels and nerves which is very common. It's when we tell ourselves that we are supposed to be perfect that the stress begins. What if we just told ourselves it is OK to be imperfect? Doctors are looking for the things that are abnormal and could cause disease, but there are a lot of benign things they will ignore because it doesn't cause a problem.

I would ask why you don't think myofascial release could help you? Here is my thinking.. when a person is stressed (myself included) everything tightens up as we clench or brace against something. It becomes a habit. My neck and shoulders get tight. I also had a whiplash injury years ago which caused the bracing behavior, and eventually it caused a spine problem that needed surgery.

Was I scared? You bet! But I got through it and learned from it and learned how to beat my fears. My physical therapist was doing myofascial release because of my tight neck and shoulders at the time the spine problem was becoming evident. It helped make my recovery from spine surgery better because I was in a better condition going into surgery. After surgery, my swallowing was painful and difficult for a few weeks because they had to go behind my throat and windpipe to get to my spine. I just had to be careful swallowing, and when I was recovered enough, myofascial release work helped loosen up my neck again and loosen the scar tissue that formed because of surgery. I still do this because things tend to tighten up if left alone. I have learned from my experience that any slight alignment issues of the spine and skull in combination with neck muscle spasms can generate a lot of pain. I can get pain across the front of my throat, tingling in my face, jaw pain, headaches, neck and shoulder pain, etc if a muscle spasm starts turning a vertebrae in my neck or tightening my jaw. Fascial work can help the tightness and muscle spasms that are causing the problems. Since my spine surgery, these issues have calmed down, and I have a lot of body awareness so when something starts, I can lay down and check my spine alignment with my hands. I have learned that from my physical therapist and also some things to do to get back to realignment which stops the pain. The pain happens when muscles get stretched because they are pulled out of alignment by another opposing muscle. Sometimes I get tightness across the front of my throat from this, and my PT can always fix that. The key to staying pain free for me, is to try to maintain good body and posture alignment and that is very important for my neck to help to prevent future spine issues. (See response continued in the next message.)

REPLY
@jenniferhunter

@anthonymg Anthony, I had a bump on my inner lip that looked very much like the bump in your picture. Mine was from accidentally biting my lip hard a few times (enough to puncture it) and it developed scar tissue and got even bigger and became what they call a fibroma. Of course, since it was in the way, I would catch it and bite it every few months or so. I lived with that probably at least ten years and just tried to avoid biting into it. I was going through some major dental work with an oral surgeon in the last couple years for dental implants and I had him remove it. That likely won't happen again because the new front teeth don't make contact with the lowers which is to prevent putting pressure on the implants.

Honestly my teeth have been a problem most of my life. I was only 9 when I fell on my face and broke them, and for most of my life after that, I had ugly teeth that I couldn't hide from anyone and I had deep fears of dentists and doctors. The trauma from that event caused a cascade of stainless steel caps, braces, bonding, root canals, crowns, bridgework to replace crowns, oral surgery for failed root canals, extractions and dental implants, and now for the first time, I have front teeth that look nice. It took 55 years, and now I am free of those old problems. No one can tell that my teeth were made in a lab. I know, and I actually worked in that same dental lab years ago, and it's OK. They are not exactly the natural teeth I had, and no one can bring them back. The new ones are just different. I spent some time looking at other people's teeth and noticing how very different and imperfect they can be. I had perceived other people as having nice teeth and mine were always ugly, and I had to tell myself it was OK to have different teeth. They do look nice.

Perfection is something that is hard to define. Most people are somewhat asymmetrical and even internally there can be differences in placement of organs and vessels and nerves which is very common. It's when we tell ourselves that we are supposed to be perfect that the stress begins. What if we just told ourselves it is OK to be imperfect? Doctors are looking for the things that are abnormal and could cause disease, but there are a lot of benign things they will ignore because it doesn't cause a problem.

I would ask why you don't think myofascial release could help you? Here is my thinking.. when a person is stressed (myself included) everything tightens up as we clench or brace against something. It becomes a habit. My neck and shoulders get tight. I also had a whiplash injury years ago which caused the bracing behavior, and eventually it caused a spine problem that needed surgery.

Was I scared? You bet! But I got through it and learned from it and learned how to beat my fears. My physical therapist was doing myofascial release because of my tight neck and shoulders at the time the spine problem was becoming evident. It helped make my recovery from spine surgery better because I was in a better condition going into surgery. After surgery, my swallowing was painful and difficult for a few weeks because they had to go behind my throat and windpipe to get to my spine. I just had to be careful swallowing, and when I was recovered enough, myofascial release work helped loosen up my neck again and loosen the scar tissue that formed because of surgery. I still do this because things tend to tighten up if left alone. I have learned from my experience that any slight alignment issues of the spine and skull in combination with neck muscle spasms can generate a lot of pain. I can get pain across the front of my throat, tingling in my face, jaw pain, headaches, neck and shoulder pain, etc if a muscle spasm starts turning a vertebrae in my neck or tightening my jaw. Fascial work can help the tightness and muscle spasms that are causing the problems. Since my spine surgery, these issues have calmed down, and I have a lot of body awareness so when something starts, I can lay down and check my spine alignment with my hands. I have learned that from my physical therapist and also some things to do to get back to realignment which stops the pain. The pain happens when muscles get stretched because they are pulled out of alignment by another opposing muscle. Sometimes I get tightness across the front of my throat from this, and my PT can always fix that. The key to staying pain free for me, is to try to maintain good body and posture alignment and that is very important for my neck to help to prevent future spine issues. (See response continued in the next message.)

Jump to this post

(Continued message)

I have learned one of the greatest lessons in my life on how to accept things I cannot change, and to go forward to embrace the challenges that I do have by making educated choices in my healthcare. I asked myself some very hard questions to find the root cause of my fears, and I found answers. Those fears are gone and I have passed a few tests that confirmed this because since then, I have gone through other surgeries fearlessly.

I have learned how powerful the mind is, and if you believe you can conquer something like fear, you can. I didn't think that was something I would ever be able to do, but it changed my life. Keep an open mind and give yourself permission to succeed. Give yourself permission to trust others who are experts. I remember back when I was a kid, I got a cut on my foot and I couldn't remember if I had had a tetanus shot. All I could think about was lock jaw, and when I got a pain in my jaw, I got scared and panicked thinking that I had it and I was too scared to tell my parents. I didn't have enough training to diagnose myself, and I still don't even though I have learned a lot about healthcare. I was wrong of course, and when I stopped thinking about that, the pain went away. I had caused a lot of stress by believing something for which I had no knowledge about or evidence.

The mind can play tricks on us if we let our fears run away with us. That is because we are wired to respond to danger as a survival behavior, and our brain doesn't perceive the difference between real and imagined danger. I had to tell myself to stop thinking like a 6 year old. I had been in a reactive mode as a child when I had no choices, but now it really was different because as an adult, and I was making the choices. I was having panic attacks before my spine surgery for about 4 months every day when I thought about having surgery. I had spinal cord compression and the only way out of that was spine surgery. The real turning point was when I asked myself, "Why am I doing this to myself?" That was when I started looking back at my life and found the events that had lead to my fears and how I had reacted at the time and been influenced by parents who had not handled things as they should have. It was my task to talk myself though an understanding of those things that I didn't understand as a child.

My physical therapist told me to stop imagining that there will be a problem, and instead imagine myself as whole and healing and working toward that goal. I think it is a good sign that you had some reduction of pain symptoms and stress is probably makes things worse. Anything you can do to lower your stress will help. It is a great advantage to have a good physical therapist to discuss things with. Often they can steer you toward a specialist who can help based on what they see. Sometimes, the cause of pain may not be so clear cut, and a PT doing myofascial release may be able to help that anyway. Certainly for me that is true.

If you feel stressed, think of something that makes you happy, like playing with your daughters. You can transport your mind to another place and reduce the stress. I did that a lot when I was scared. It was my "safe place" that I could visit any time I needed it to escape what was causing anxiety. I don't have children, but I imagined myself out in nature in a beautiful place. I can imagine how fun it must be to play with them. I think you are lucky to have them in your life.

What questions could you ask yourself now that may change the direction of your thoughts?

REPLY

Hi again @jenniferhunter

Thanks for taking the time to share all this. I'm a bit limited as I'm not a native English speaker, but I will try to reply accordingly.

As your replies are long, I assume that you will also read a long reply from me, so I will write a couple of posts with all very well explained and detailed so that then you can tell me about your thoughts. First I will reply to your comments and question and then I will detail what happened to me and what I've been through since then.

I will prepare the text and leave it here soon, probably on Monday.

Kind regards.

REPLY

Hi again @jenniferhunter and @colleenyoung

Jennifer, I'm sorry to know all that you've been through. I'm glad to know that you managed to overcome all the problems and that you have a good life 😉

I'll start by answering your question about MFR and then I will share my situation in more detail to see what you think. In the end I will leave a couple of questions that could help me a lot in the case you have any answers or at least an opinion.

"I would ask why you don't think myofascial release could help you?"

-> In fact, I wouldn't say it can't help me. Maybe it can. I always consider all the possibilities. That's why I was open to treating my problem from a psychological/psychiatric point of view for the past 7 months. Unfortunately with no visible results so far. But I still believe it could very well be a case of a psychosomatic problem or a mix of both physical and psychosomatic symptoms.

When I said that I don't think my situation could improve with MFR, first of all it's just a thought, an opinion based on everything that I know about the situation, but not that I am totally convinced for a start. Second, the reason why I have that opinion is because my symptoms are very different from tightness or pressure in the throat. Since this happened to me, for the past 14 months, I have considered every possibility. One of them was globus pharyngeus, or globus sensation, which in many cases when there is no physical explanation, comes from psychosomatic origins.

But, in my case, although there is foreign body sensation (and other terrible sensations), there is no feeling of tightness or pressure in the upper esophageal sphincter, nor any sensation of pressure in muscles from that region of the body. That's one of the reasons (and probably the main reason) why I think that releasing pressure wouldn't help much in reducing the symptoms, even less in solving the problem. Or else the anxiety pills I tried, or the mirtazapine 30mg per day I'm taking (antidepressive and anti-anxiety) would have had at least a bit of direct impact on the symptoms.

Or even some days when I'm more relaxed, the symptoms could improve a bit. But from 14 months of experience, there is no direct relation between being more relaxed and softer symptoms. Instead, I have a terrible sensation of something grasping, as if there was a small clothes peg (or clothespin) slightly grasping in there all the timee. But not making any pressure or tightness. It is very well localized and the main symptom is always there, in the same place and with the same characteristics. 

It seems to vary in intensity, that's why sometimes I feel a bit better and can deal with it better also, but that's just a variation in intensity, because the sensation is always there and is the same. And this variation has no relation whatsoever with tension, stress or anxiety. When I swallow it feels like something is stuck in there and gets me a sensation as if the structures of the throat don't fit well in each other, as an occlusion problem, which unfortunately matches the diagnosis of permanent damage to the cartilages of that area, specifically the epiglottis.

As you might have noticed, I never refer to it as "pain". This is because it is not very painful. Yes, there is a slight pain that also has a bit of variation from time to time, but the pain is not the main problem. This is not a painful situation at its root. But it is a terrible sensation to be felt all the time, 24 hours per day, 7 days per week, for 14 months now. I've experienced other terrible pains and sensations before, it's not that it's the first time in my life that I have to deal with pain and health issues.

This is not a case of someone who never had any health problems and now that has something for the first time is not dealing well with the situation. I have chronic asthma, pulmonary obstruction, severe allergies, aortic regurgitation, ulceras in the intestines, irritable bowel syndrome, grade 1 polyposis in the paranasal sinuses, deviation of the nasal septum (which doctors say it's big and should be corrected), a severe problem of nausea and vomits that was never diagnosed but makes me reach states of severe malnutrition if I don't medicate, degenerative disease in my left eye (if I live 10-20 more years I will probably lose sight in the left eye), augmented liver, vesicular polyp, among many other problems with no relevance such as heart murmur, high cholesterol, high uric acid, high glicemia, etc. 
If I could choose between having all these problems solved or having my throat problem solved, I wouldn't even think twice. I was living well with all these problems, while the throat problem is destroying my life in every way. 

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Besides all these health problems, I had for example a spontaneous pneumothorax 6 years ago, with total collapse of the left lung. Which according to the nurses in the hospital (where I spent one week with a tube inserted in my chest) is one of the worst pains that a person can experience. I personally don't agree as I can imagine that, for example, getting an amputation in an accident has to be more painful, but yes, the 60 minutes between the onset of the symptoms until I was at the hospital already medicated and getting oxygen were really very very painful.

And all the experience at the hospital was a total nightmare. But even so, I'd rather have 3 or 4 pneumothorax every year instead of having this problem for the rest of my life. You see, in 2021 I suffered more than in the entire 40 previous years of my life. And it's not a matter of not trusting the doctors, as one of the ENT specialists I've consulted diagnosed me with a permanent damage to the cartilage of the epiglottis, without any possible treatment and with the same symptoms for the rest of my life. He said that I have to accept it as if I had a stroke and remain with sequels for the rest of my life.

But then, he presented no evidence of his diagnosis, it was more like a theory, which the other two ENT's and a gastroenterologist that I've consulted don't agree with. But they don't have the time to give me their own theory. So I accepted it could very well be a psychosomatic problem and grabbed that possibility with all the hope that it could be my last and only chance to get better one day.

All to find, 7 months later, that I haven't improved even a bit and that the symptoms in my throat remain the same. While now, for the first time in my life, I find myself relying on antidepressants, which I really don't like and I can imagine how hard it will be when it comes to stop using them. Well, if I had my throat problem solved, I think it would be easy. Otherwise…

REPLY

Now here's my story, my nightmare:

-> 14th of November 2020
I was a happy person, life was good. My daughters, one with 8 years and two with 1 year, were (and still are, of course) the light of my life, they are really beautiful and cute. Of course I was a bit anxious about the course of things in the world. And of course I had a few stresses in my life, as most people do. But the balance was very positive. 

I had (and still have) a job that I like very much and I consider perfect for me, with a salary that allows me to finance my family of 5, leisure times included. Yes, I had a few health problems (as listed before), but it was no big deal for me. I was happy and with optimism in regards to the future. 90% of the time I had positive and optimistic thoughts about my life and the future.

As usual, I cooked dinner, that day it was a Saturday dinner and I cooked lobster, which we didn't have for a long time. We usually have shellfish, maybe once every week, but it's usually other shellfish, like shrimp, clams, barnacles, etc. The lobster were bought frozen. I left them to defrost at 1PM and they were cooked at 7PM.

I'm attaching to this message a photo of the piece of lobster (a mandible) that caused all this situation. You see, I truly appreciate all your support and attention, while I also think I could benefit from some very very important information that I could collect from this forum if I go straight to posting the questions to which I haven't found an answer anywhere else to this point. But that will come in the end.

As you can see in the photo, this is a very hard shell of lobster. The spikes are hard as rocks and sharp as needles. To have an idea, when I grabbed the piece, it automatically got stuck to my fingers as if it had glue. It's the little tips of the spikes that are so pointy and sharp that they slightly perforate the first layer of skin without actually entering the skin but enough to get "glued" there.

In that meal I had the bad idea (I'd give one leg or one arm to be able to go back in time and just say to myself not to do it) to bite that with my teeth in order to break it and get the "meat" inside it. What happened was that one of these spikes perforated my tongue, deep, it felt like it perforated the tongue almost from one side to the other. But that was not a problem, it was painful but it lasted less than 1 minute. I bled a bit and then I continued eating.

But at the same time, 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.

I had this foreign body sensation and I remember going to bed 3 hours later that day with that uncomfortable sensation and thinking to myself that if it was the tip of a spike it would be so small that it could well pass unnoticed if I had to seek medical help. 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.

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.

REPLY

->3rd of December 2020
In the ENT, he did a videolaryngoscopy and found nothing. The 1st disappointment. Then he sent me for a CT Scan, which I did by the 10th of December.

->21st of December 2020
The day I went to get the result of the CT Scan. 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. Went back to the ENT a week later and he prescribed another CT Scan, this time with thinner layers or only 0.6mm, just in case the fragment was really small and not visible in the 3mm layers of the first CT Scan.

-> 25th of January 2021
Visited the ENT again with the result of the second CT Scan, which once again showed nothing. 3rd disappointment. He said that he couldn't do anything else for me and we agreed that I would wait more time to see if the problem solved itself with time.

-> 10th of February 2021
The problem persisted and I visited the gastroenterologist that followed me between 2008 and 2013 for my stomach problems to know about his opinion and to see if he found adequate to perform an upper endoscopy to check if everything was ok with the oesophagus. We agreed that it would stay for a later time and that I should wait a bit longer to see if time healed. He told me to go to another ENT if the problem persisted for one more month.

-> 4th of March 2021
With no improvements to the symptoms, I decided to go to another ENT. All this time, since the 14th of November 2020 till the 4th of March 2021, I suffered as never before. I dealt with the worst anxiety ever. It was very hard. But the worst was still to come.

Sitting there at the hospital, waiting to be called, I was not stressed as I wasn't expecting much from the appointment with the ENT. I expected him to say that he couldn't do anything and that I should wait more time or, maybe, he could prescribe another exam. 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.

He heard my story then he performed a laryngoscopy. He also had a look at my data from the hospital's database. Which is the same hospital where I was treated between 2008 and 2013 to my stomach problems. He noticed that by 2013 I was prescribed (by the GI doctor) an upper endoscopy to discard esophageal eosinophilia, which in his opinion meant that I was a person prone to allergies.

Which is correct, but not to the point of having eosinophilia or esophageal eosinophilia. My eosinophils always turned out high in the blood analysis, but not that high, normal values range from 1% to 5% and I had between 6% and 11%, which according to the allergy specialist was due to being always exposed to cat dander, to which I'm really ultra-allergic.

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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.

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->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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