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.

Quote -> “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 understand the questions and the way things are related. I had a good childhood. Of course not everything was perfect, but I have difficulty in finding stressful moments in my first 18 years of life. Well, I can list a few, but I think (I may be wrong) that it shouldn’t be enough for later psychological repercussions in life. I also don’t remember to suffer any level of anxiety close to the levels of the past 14 months. Only later, when I was 27, then at 30 and at 34, but even all these years together don’t get even close to the last 14 months.

Quote -> “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.”

-> Thanks. I can believe I can succeed knowing that I have a permanent damage that is untreatable. I can believe I can succeed knowing that I don’t have any permanent damage that is untreatable. But I can’t believe I can succeed without knowing with good evidence in which case I find myself. At least for now, I can’t believe I will succeed, because unless I find answers, doubt will always be there blurring my way and pushing me back.

Quote -> “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?”

-> Yes, you are right. He assumed to much for the few questions he asked me. About 95% of the problems in the epiglottis, mentioned online, are from epiglottitis, which is swelling of the epiglottis to a point when it can be life treating as it can block the airways, as you well mentioned. It was the more normal thing to happen if that was the case, but in my case we have to take into consideration that it has to be something really very rare.

And it could be more like a reaction to a bacteria or toxin that led the organism to attack itself through the means of an autoimmune response. I don’t know if I can share external links (non-commercial) here, so I’m not sharing, but I saw a scientific article/study showing that the most common bacteria found in lobsters is pseudomonas aeruginosa. This is the bacteria responsible for chondritis, inflammation of the cartilage (usually from the hear) with possible destruction of the cartilage.

If a good quantity of pseudomonas aeruginosa entered my bloodstream through the injury in the tongue and then migrated to the first place where there was cartilage, the larynx, and then lodged close to the epiglottis, deforming it, would it be very painful? Would it cause fever in 100% of the cases?

After the “accident”, I didn’t have fever. I had pain, but nothing close to unbearable. I didn’t even need to take painkillers. Eating was not painful at all. I only took a painkiller one night because I wanted to test if it helped, not that I really needed it. I remember that one night, the 3rd or 4th night after the “accident”, I had some pain, which together with the terrible feeling, made me stay awake for 2 or 3 hours in bed. Now I tend to think that maybe that was the night when the cartilage was attacked.

But all this are ad ups that I made to the ENT’s theory. Because his theory is a bit weak as you point. And yes, he didn’t even ask me if I had trouble breathing, fever, nothing, he just wanted to send me out of there as quick as possible. Oh, and I forgot to mention that in late May I had an appointment with the allergy specialist... she prescribed me some blood tests, one of which proved that I’m not allergic at all to lobster or seafood.

REPLY

Quote -> “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.”

-> Yes, I know. That is a correct reasoning. I wish it was that simple, but unfortunately it isn’t. A laryngeal configuration as mine may be normal, but it also can be a result of the problem we are talking about here. I don’t have an image prior to November 2020 that could show us if it was already like that before. It could bee more symmetric and now be more asymmetric due to the problem.

I know we are all asymmetric, and even more in the throat. As I mentioned, there’s even an article in the internet named “Normal Laryngeal Variability”. I know I could already have this configuration 2 years ago. I just can’t be sure, that is the problem.

And I can’t remove this from my concerns because although the theory is really questionable, the fact is that it matches the reality of things: I still have the symptoms as he said I would and it really feels as if I lost a part of the structure in the left side close to the epiglottis.

Quote -> “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.”

-> Yes, that’s what I think, he was not humble enough to admit that he has no idea and so he picked a possibility and threw it as a theory. He seemed very convinced but of course he couldn’t be 100% sure and proof of this is the fact that he told me to try to find an exam previous to November 2020 to see if the configuration was or wasn’t the same.

And yes, he does not know how such news can affect a patient. It affected me a lot. You don’t say to a patient that you will live with 20% of your previous quality of life, forever, while you not even tell the patient to schedule another appointment to discuss a bit more about the problem. To share advice, because if it happened once, it could happen again...

Quote -> "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."

-> That's when they should just admit that they don't know, instead of throwing theories without proper evidence to sustain them. But the fact is that I still have the same symptoms and 14 months is long enough to assume that the problem is not going to solve or improve by itself. 

Today I woke up so depressed, like I didn't even want to get out of bed. I went to bed yesterday depressed, but when I woke up I felt even worse. Might be from the dreams that I have or something. The brain is left alone for many hours without conscious control and it gets wild...

I tend to think that in my case I would deal much better if the problem was somewhere else in the body. The throat has to be the most difficult zone to have problems and cope with them without triggering bouts of anxiety. Maybe if I had problems somewhere else I would say the same, but the fact is that I already had problems in many other parts of the body and I was never affected even 10% compared to this.

Quote -> "Was he right? No! He may have been trying to escape the situation and that is a reflection of him, and not you."

-> Yes, thanks. I want so much to prove him wrong, but so far I haven't been able to do that.

REPLY

Quote -> "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've been a full time detective. I actually made a list of facts and strong possibilities (these are marked with a "?") that contribute to denying his diagnosis. Here's the list:

- Bacteria or toxins from the lobster would have caused gastric symptoms, such as vomiting, diarrea, etc. (?)

- An infection from bacteria or toxins from the lobster would have caused general quaisiness probably with fever.

- Severe allergic reaction would have caused a significant inflammation of the throat. (?)

- Severe allergic reaction would have caused relevant symptoms right after the meal. (?)

- Cartilage degradation would have caused extreme pain. (?)

- An injury or inflammatory process in the throat would provoke pain to the passage of strong (51% alcohol) firewater. (?)

- An injury or inflammatory process in the throat would provoke pain to the passage of food. (?)

- I'm not allergic to lobster (blood tests) nor to any other shellfish (blood tests) and I had eaten lobsters from the same origin before.

- I don't have esophageal eosinophilia (in July 2021 as well as in 2010);

- Many people eat oysters and other raw shellfish which usually also contain pseudomonas aeruginosa and other bacteria, while there are no records of other people with this diagnosis.

- A scientific article informs that infection by pseudomonas aeruginosa, even in cartilages (hear), causes pain, fever, redness and swelling.

- A lot of people eat the most dangerous and anti-hygienic stuff, while there are no records of other people with this diagnosis.

- There are no records in the internet of any case of shrinking or deformation of the epiglottis due to allergic or auto-immune reaction, nor from bacteria/toxin attack.

- One ENT specialist, one GI specialist, one Allergy specialist, one neurologist and two doctors of general practice (although without proper investigation) consider that the diagnosis does not seem to make sense.

- Damage to cartilage leaves visible marks even months after the accident. (?)

- The onset of symptoms was immediate, just a few minutes later.

- The immediate symptoms were not painful, just a simple (and soft) sensation that something was not right in the throat.

- A scientific article entitled "Normal Laryngeal Variability" shows images of different epiglottic configurations, all of them considered normal and one of them has similarities with mine.

- I don't have any auto-immune disease, confirmed by blood test to "Ac. Antinuclear Ana", both in 2021 and in 2016.

- The result of "Ac. Antinuclear Ana" means that the organism does not have the propensity to produce antibodies in suficiente numbers to cause accidental damage to its own cells and healthy tissues.

- The blood tests to "Rheumatic Factor" turned out negative, which indicates a low probability of auto-immune disease capable of affecting cartilages.

- In an eventual damage to the cartilage of the epiglottis, the probability of having damage also in the other surrounding cartilages would be very high and, in all the cases (?), these damage would be visible in CT scan and MRI.

- People reduce the size of the epiglottis (surgically) to treat sleep apnea and after recovery they remain with no symptoms at all.

- Billcomiskey ( @billcomiskey ) from Mayo Clinic "Connect" forums lives without an epiglottis for 15 years (surgically removed) and when asked if he feels any pain or discomfort he replied that he has no pain or discomfort and really never had any once it was healed.

The list is getting longer and longer. As you can see, many of these points should have been questioned by the ENT who theorized the diagnosis. He didn't ask any. The ones with a "?" is because I'm not sure. If you are sure of any of them, please tell me.

I want to thank you for all the suggestions (books and links) that you shared with me. I will have a look at all of them and I will also consider clinical hypnosis, as my psychologist also told me about it and I left it for a later time. Maybe now it's the time.

REPLY

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

-> I know very well a few questions. And also the answers. But it was like this already before and I could live well with it. I also understand that it could be related to the problem (if purely psychosomatic), but I think it's just a coincidence and although I have a profile that fits with the development of psychosomatic disorder, coincidently I had this problem which is rare but physical. But I'll ask these questions to myself anyway.

Quote -> "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?"

-> No, nothing of that kind.

Quote -> "Have you been letting your fears make decisions for you?"

-> Yes, since November 2020. So many things that I delayed because of this. So many decisions that would have been different. Even work projects. I'm totally influenced and limited by this situation. Before November 2020, of course sometimes I may have let my fears make decisions for me, but not that much and I'm not sure if it's significant at all.

Quote -> "What beliefs do you have that may not be valid anymore?"

-> I'm a skeptical person. I have very few beliefs. I have mere opinions and, as a skeptical person, I changed opinions a few times in my life. With no problems, because I usually don't believe in definitive truths. But yes, in the past 2 or 3 years I changed my views in some ways. For example, politically, today I have very different views than the ones I had just 2 years ago. But I think it is normal and something tells me that there are loads of other people like me out there.

REPLY

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

-> Now, that's the question that I will use to finish this reply and I will take it as an opportunity to tell you about the real problem here. My wife, the way she deals with our daughters, the way she deals with me, the way she sees life, is actually devastating for me. She has very few patience for children. She admits it, she often says that she hates children and hates having to spend time with them. Unfortunately, children is not the only thing in life that she hates. Most of the time she is furious about something, anything, from the heat of the sun, to the sound of the wind, even the more futile things in life stress her out big time.

She complaints about something with rage at least 5 times a day. I think that the average per day might be around 20 times. And sometimes it gets to an extreme of rage that becomes exhausting for me, for my patience. Also, from the beginning, she never gave me any empathy or support because of this problem. Since day 1. I remember telling her about this, I think, on the 4th day after it happened. I told her "since Saturday dinner I have this symptoms in my throat as if a fragment of shell got stuck", and she reacted by turning her eyes and making that expression with the face that says "shut up you dumb".

It was not a surprise for me. I know her well. We have been together since 2002, more than 19 years. I knew before this that this person would never support me one day when I had a health problem. I just expected that for later, when I get to 55-60 years, not now with just 41. And it has been so much worse than I ever imagined. You see, I'm not complaining all the time. Even in the first 6 months, if we were to put together all the time that I talked with her about this, we may get to an average of no more than 2 hours per month. While she complains more than 2 hours per day about futile things that annoy her and making me feel that is my fault.

Now I already lost hope and I don't expect any support from her. The last time this subject was even mentioned was about 100 days ago, in early October. Since then, nothing. I prefer to not even mention it and hide when I cry. She hasn't had the decency of even asking me how am I doing for all this time. A lot of times, in the first 6 months, in the worst days of my life, as this is by far the worse thing that ever happened to me and in 2021 I suffered more than in all the rest of my life altogether, sometimes, I was so down, so anxious, in such need for a hug...

But I never got one. Not even a hand on the shoulder. Nothing. All the opposite, she kind of repelled me when I sought support from her. Many times she even reacted with rage. It came to a point (I think in August or September) that she even told me "I have no empathy at all for you and your problems", and "screw you throat", and so on, and so on. So, you see, it's not even just disappointment for not having her support. It's worse than that, she can't even ignore, she makes it even worse. And this type of acting, which is her problem, not my problem, is not only directed to me. She does the same with our daughters, with her other family members, with anyone who she is intimate with, she acts like this. Zero empathy, zero compassion, but even worse than that.

I know the impact it can have in a situation like mine. But I don't believe this is the reason or the root of the problem. She could be the nicest person, supportive and compassionate, and I would be in the same situation anyway. This is what I believe. But hey, it would be a great help if she acted with at least a bit of decency. I would probably deal better with the problem. Like this, I see this big problem and when I think I might be able to take my head out of the water and breathe for a while, I face this other problem and it brings me a lot of anxiety.

I know that now that I told you all this, you will think that it is an anxiety problem, a somatization through symptoms in the throat. Yes, I agree I have the profile for that and the ideal family environment for a perfect storm that could explain what is happening to me. It's true. But believe me, although all that is true, coincidentally I suffered some sort of rare accident that damaged something in my throat. And the doctors haven't yet payed enough attention to convince me otherwise.

Now to the question about creative things that I can do with my children to have fun and escape the stressful thoughts, there are a lot of things but it's hard to implement them in a way that is not stressful. When the mother is also present, it is usually very difficult, because something has usually already happened that enrages her. 

And, when she is not present, I'm stressed anyway because I know that once she arrives she will get mad with something, anything, whether it's something that is out of place, or something that I should have done to the girls that I didn't, as much as I try hard to have everything in order, the way she likes, she easily finds something to stress me out, making me feel that her life is miserable and I'm the one to blame. 

When it's all the opposite, I work hard and do everything that I can to give her and our girls a good life. And she has a good life. We are economically stable, she only works 3 hours per day, the girls are at school from 9' to 5', when there's no school I pay for the nanny, she does not have to clean the house, I pay for an housemaid, I pay for everything so that her salary is just for her stuff (hair, nails and shopping). She is completely healthy. She has everything and time for our wonderful 3 daughters, something that a lot of mothers dream of having, as nowadays it's very hard to have time for the kids. Oh, and she often says that I'm selfish...

I'm in a living nightmare. These 2 situations are getting me totally exhausted. To the point that I'm starting to think that I can't handle it anymore. If I didn't love life so much, if I wasn't a psychologically well balanced person before all this, I would be seriously considering suicide. But my brain does not work like that. Sometimes it feels like my brain is still in 2019, when everything was close to perfection. Or I have it divided in two, one part of the brain is devastated with all this situation, the other part is still pushing me back to when I was still a person.

Thanks.
-

REPLY
@anthonymg

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

-> Now, that's the question that I will use to finish this reply and I will take it as an opportunity to tell you about the real problem here. My wife, the way she deals with our daughters, the way she deals with me, the way she sees life, is actually devastating for me. She has very few patience for children. She admits it, she often says that she hates children and hates having to spend time with them. Unfortunately, children is not the only thing in life that she hates. Most of the time she is furious about something, anything, from the heat of the sun, to the sound of the wind, even the more futile things in life stress her out big time.

She complaints about something with rage at least 5 times a day. I think that the average per day might be around 20 times. And sometimes it gets to an extreme of rage that becomes exhausting for me, for my patience. Also, from the beginning, she never gave me any empathy or support because of this problem. Since day 1. I remember telling her about this, I think, on the 4th day after it happened. I told her "since Saturday dinner I have this symptoms in my throat as if a fragment of shell got stuck", and she reacted by turning her eyes and making that expression with the face that says "shut up you dumb".

It was not a surprise for me. I know her well. We have been together since 2002, more than 19 years. I knew before this that this person would never support me one day when I had a health problem. I just expected that for later, when I get to 55-60 years, not now with just 41. And it has been so much worse than I ever imagined. You see, I'm not complaining all the time. Even in the first 6 months, if we were to put together all the time that I talked with her about this, we may get to an average of no more than 2 hours per month. While she complains more than 2 hours per day about futile things that annoy her and making me feel that is my fault.

Now I already lost hope and I don't expect any support from her. The last time this subject was even mentioned was about 100 days ago, in early October. Since then, nothing. I prefer to not even mention it and hide when I cry. She hasn't had the decency of even asking me how am I doing for all this time. A lot of times, in the first 6 months, in the worst days of my life, as this is by far the worse thing that ever happened to me and in 2021 I suffered more than in all the rest of my life altogether, sometimes, I was so down, so anxious, in such need for a hug...

But I never got one. Not even a hand on the shoulder. Nothing. All the opposite, she kind of repelled me when I sought support from her. Many times she even reacted with rage. It came to a point (I think in August or September) that she even told me "I have no empathy at all for you and your problems", and "screw you throat", and so on, and so on. So, you see, it's not even just disappointment for not having her support. It's worse than that, she can't even ignore, she makes it even worse. And this type of acting, which is her problem, not my problem, is not only directed to me. She does the same with our daughters, with her other family members, with anyone who she is intimate with, she acts like this. Zero empathy, zero compassion, but even worse than that.

I know the impact it can have in a situation like mine. But I don't believe this is the reason or the root of the problem. She could be the nicest person, supportive and compassionate, and I would be in the same situation anyway. This is what I believe. But hey, it would be a great help if she acted with at least a bit of decency. I would probably deal better with the problem. Like this, I see this big problem and when I think I might be able to take my head out of the water and breathe for a while, I face this other problem and it brings me a lot of anxiety.

I know that now that I told you all this, you will think that it is an anxiety problem, a somatization through symptoms in the throat. Yes, I agree I have the profile for that and the ideal family environment for a perfect storm that could explain what is happening to me. It's true. But believe me, although all that is true, coincidentally I suffered some sort of rare accident that damaged something in my throat. And the doctors haven't yet payed enough attention to convince me otherwise.

Now to the question about creative things that I can do with my children to have fun and escape the stressful thoughts, there are a lot of things but it's hard to implement them in a way that is not stressful. When the mother is also present, it is usually very difficult, because something has usually already happened that enrages her. 

And, when she is not present, I'm stressed anyway because I know that once she arrives she will get mad with something, anything, whether it's something that is out of place, or something that I should have done to the girls that I didn't, as much as I try hard to have everything in order, the way she likes, she easily finds something to stress me out, making me feel that her life is miserable and I'm the one to blame. 

When it's all the opposite, I work hard and do everything that I can to give her and our girls a good life. And she has a good life. We are economically stable, she only works 3 hours per day, the girls are at school from 9' to 5', when there's no school I pay for the nanny, she does not have to clean the house, I pay for an housemaid, I pay for everything so that her salary is just for her stuff (hair, nails and shopping). She is completely healthy. She has everything and time for our wonderful 3 daughters, something that a lot of mothers dream of having, as nowadays it's very hard to have time for the kids. Oh, and she often says that I'm selfish...

I'm in a living nightmare. These 2 situations are getting me totally exhausted. To the point that I'm starting to think that I can't handle it anymore. If I didn't love life so much, if I wasn't a psychologically well balanced person before all this, I would be seriously considering suicide. But my brain does not work like that. Sometimes it feels like my brain is still in 2019, when everything was close to perfection. Or I have it divided in two, one part of the brain is devastated with all this situation, the other part is still pushing me back to when I was still a person.

Thanks.
-

Jump to this post

@anthonymg I want you to know that I believe you. You are in a very difficult situation with your marriage and only you can decide what you are willing to tolerate. I had a failed first marriage that wasn't my fault.

As hard as that was, it was a blessing in disguise because I decided to reinvent myself. I had always done art work and I was working in a job I wasn't happy with. I asked my parents if they would send me to art school and they did. It was wonderful therapy for me and really tough because I was in a good art school that taught the discipline of really learning to draw and paint realistic work and to work from live models. At first I was shocked because I came in thinking I was good, but soon found out I had a lot to learn. I worked hard and excelled and I figured if I could do this well with a broken heart, how much better can I be when I get over that hurt?

It was a gift that I worked for, and not so very long ago, I was loosing that gift because of my spine injury. I was loosing the coordination of my arms. Five surgeons at other facilities would not help me even though my imaging showed the compression of my spinal cord. That is what brought me to Mayo Clinic and totally changed my life. That is why I help here on Connect with gratitude for the surgeon who made it possible for me to continue to do my art work. Gratitude is very powerful and can help you feel better if you can find something to be grateful about every day. I have been here over three years because I believe in the power or doing good and helping others. It helps me too to be here and to feel good about my life.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Can you tell me about your children and what you would enjoy doing with them by yourself?

Wouldn't it be nice to read them a story every night, give them each a big hug and tuck them in bed each night?
You could look forward to that all day long.

Are you allergic to dogs? If not, do you have friends with dogs that you can take for a walk for some canine therapy? Animals can really help.

Have you heard about what doctors call a differential diagnosis? What that means is to consider that the symptoms a patient has could be coming from a different problem entirely. When different problems have overlapping symptoms, it can be confusing to figure out where the real problem is, or it could be a combination of a few different issues together. With my spine surgery, the surgeon needed to know that my pain was not caused by a problem like MS, or that the pain in my arm was not caused by a physical problem in my arm instead of coming from the spine. If that was the case, spine surgery would not help at all. Doctors need a much higher degree of certainty or proof before they can confirm a diagnosis. I think their jobs were easier before the internet gave patients access to information. I do think that when I talked to one of the spine surgeons who evaluated me and I used correct medical terminology discussing my case, it probably irritated him. With his years of training and experience, he has a right to being the expert that he is, and it may have seemed that I was a patient was finding stuff on the internet to challenge him. I understand the terminology because I have a biology degree. I can understand his point of view. This was the last surgeon I saw before I came to Mayo for treatment.

I asked my physical therapist who is an expert in manual therapy and myofascial release about your symptoms. She has a doctorate and Expert level certification with the John Barnes methods, and has taught me a lot about physical therapy. (John Barnes invented this method of MFR therapy years ago.) I also have a biology degree because at one time, I was a Pre-med student, so I understand a lot of medical literature. I have done MFR work with her for several years and still do, so I know how much I have benefited from it, and it made my recovery from surgery easier. Her suggestion for you was to see a good manual physical therapist for an evaluation and diagnosis. A PT can spend a lot more time with you diagnosing and treating a problem.

Here is what she suggested as a possible issue to be evaluated.

"I would still have a differential diagnosis done by a physical therapist to rule out any issues with soft tissue and fascia. It sounds like trigger points to SCM. Possibly sphenoid or omihyoid involvement. It can make it feel like a stick in throat. He should see a Physical Therapist who has good manual therapy skills to rule that out." To this I will add the MFR therapists link again because good manual therapists are listed there. http://mfrtherapists.com/

SCM stands for the sternocleidomastoid muscle. These are the 2 muscles that connect from the center front area of the neck on each side up to the skull below the ear. You see these muscles engage when turning the head. This is a link about the SCM
https://www.ncbi.nlm.nih.gov/books/NBK532881/
Picture of SCM
https://learnmuscles.com/glossary/sternocleidomastoid-2/
Sphenoid Bone is part of the skull. This link illustrates.
https://anatomy.app/encyclopedia/sphenoid-bone
Here is a really cool illustration of the Omihyoid muscle and you can move a slider and see the layers.
https://www.healthline.com/human-body-maps/omohyoid-muscle#1
In re-reading our conversation, I also saw a mention about your thyroid and an uptake of radioactive iodine during a test. I had that test too and a large uptake of the iodine. I was later diagnosed with Hashimoto's Thyroiditis which is an autoimmune condition where the body is attacking the thyroid. My thyroid condition improved a lot after removal of old silver dental fillings. I have to take thyroid medication and I take natural desiccated pig thyroid. That could be another medical reason for depression if you have a low functioning thyroid.
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855
What are you grateful for today in your life?

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Hi @jenniferhunter !

Thanks so much for all your support.

Today I'm grateful for many, many things. 15 months ago I even thought frequently to myself about how lucky I am (was) in life. Despite a few problems, the balance was so positive. And I was grateful. Now, almost everything that I was grateful for are still present in my life.

I have a wonderful family, that's the most important thing for me. I don't regret anything just because of my daughters. I'm so lucky to have them, they are super healthy children, they are happy and funny. And, when everything was planned to having a second child, having twins and ending up with 3, was a great blessing. I remember the day when I received the news, that there were two babies and not just one, that was the happiest day of my life. Summer of 2018, good times...

I have a great job and great bosses too. They have always been amazing with me. Even now, with this situation, my productivity dropped a bit, but they know what I'm going through and they are honest when they say that now it's time for me and that I don't need to worry about work. I work for them since 2009 and they know, and say, that for so many years I did so many important work for the company, that they are eternally grateful and they are not worried if now I have to slow down for a while.

I'm grateful for all that. And for everything else I have in life. I'm happy with my personality and with my appearance. Actually, the last 14 months were very hard and I'm sure I would look much better if I wasn't living this nightmare, but still I'm good looking and happy with myself in terms of appearance and personality. Which I don't give much value, but I suppose it's important.

I'm also grateful for material possessions that I have. I would change them for health, of course, but that is not possible and I can't complain about this also. Not that I am rich, just that I'm ambitious and I have enough to be happy.

I'm grateful for living where I live. For many, paradise on earth. I wouldn't call it paradise, but I live in a very touristic area with great weather, some of the most beautiful beaches in the world. I live in a small city, almost like a village, so I have a quiet life in a nice place.

So, you see, there are many positive things that I can hold on to. But, at the same time, I feel like I have everything and nothing. Because this problem is totally blocking me to live my life. That's why I say that I would change this for a leg or arm amputation. As with that, I'm sure I could live. I would have to adapt. It would be hard and painful for a good while, I know that. But there would be margin to be positive and confident in improvement, as with time I would get better and adapted.

But this problem, it doesn't get better and I'm very sorry (and sad) to say that I can't really adapt to this. It is a constant agony. All the time, every day. My life was not perfect, but even if it was, this situation would destroy it all anyway. So, I can be grateful for many things, which I admit that I should be grateful for, but having or not having them, it's almost the same. As I can't really enjoy them.

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-> Quote: "I want you to know that I believe you. You are in a very difficult situation with your marriage and only you can decide what you are willing to tolerate. I had a failed first marriage that wasn't my fault."

Yes. It makes it all even worse. If I was healthy, or at least like before when I was not healthy but I didn't have this problem, I would find ways to deal with the marriage issues. But accumulating both issues, is too much for me. I don't have strength for this. Can't deal with this emotionally.

I'm getting more and more depressed. I'm abusing of unhealthy behaviours, I'm eating unhealthy, I don't do any exercise.

You see, I'm getting more and more convinced that the diagnosis of permanent damage to the cartilage of the epiglottis (and probably to surrounding tissues and/or mucosa) is probably a correct diagnosis. It matches the symptoms. And it could have happened through bacteremia (bloodstream infection), with bateria entering in the injury sight in the tongue and lodging in the epiglottis area, causing a septic arthritis (infectious) that destroyed the cartilage of the epiglottis in its left side.

I really need to find answers to the question about signs of cartilage destruction, or signs of tissue/mucosa damage in the throat. I assume that damage or destruction of these (cartilage, tissues or mucosa) have to leave signs that the damage happened. Signs like fibrosis, necrosis, calcification...

Do you thing that if I post this question in other section/group of this forum I could get answers from people with knowledge about these things?

This weekend my parents stayed with the girls and so me and my wife had a weekend out, only the two of us. I couldn't enjoy it all. It was worth for the meals, that's the few things that I can do and somehow forget about the situation for a little while. But 90% of the time, this weekend, was totally lost for the symptoms and for my worries about them. I was constantly searching for answers online in my smartphone, in a time when I should be thinking of other things and distracting myself.

As mentioned before, between mid November and mid December, last month, I was feeling better. The symptoms were somehow softer and my mentality was strong, probably with the softer symptoms. Then everything went down again. Feels like 2 personalities, as if this problem is diving m in 2. One is my side that is probably still in denial, as if this is not real and I want to be the happy person I was before, the other is my side that is realizing my life is over. My "good" side resisted for 14 months, it's not starting to give up. This is how I feel.

-> Quote: "Can you tell me about your children and what you would enjoy doing with them by yourself?

Wouldn't it be nice to read them a story every night, give them each a big hug and tuck them in bed each night?"

Yes, I can spend time with them and distract myself for a while. It's not the same as if I was healthy. That also depresses me a lot. Knowing that I'm not the father I would be, not even close.

But I understand why you ask. And it's very true that if it wasn't for them I would probably be dead of totally destroyed right now. If I'm still here, down but still alive, it's because of them. Nothing else makes me smile. With them, I can be very down but I always have a smile in my face.

You're right, I should spend more time with them doing activities that we enjoy. I have to work on that a bit. Thanks.

- Quote: "Gratitude is very powerful and can help you feel better if you can find something to be grateful about every day. I have been here over three years because I believe in the power or doing good and helping others. It helps me too to be here and to feel good about my life."

Yes, I understand that. It is a good way to improve and deal with difficult problems. I'm very impressed with all the problems you had and that you manage to recover from them. You should be proud of yourself. The way you help others is also something to be proud.

I had a look at your links, especially about sphenoid bone, omihyoid and sternocleidomastoid muscles. Very interesting. Thanks. I've searched a lot and never found anything about this. Apparently my symptoms are not from damage to any of them, but knowing about them may give me clues. For example, by the 3rd or 4th day after the "accident", the pain irradiated to low areas of the throat and even to close to the clavicle and almost until the shoulder. It could be irradiation through a muscle connected to the hyoid bone, which is connected to the epiglottis.

About the thyroid and your problems, including Hashimoto's, I'm very impressed how you had so many health problems, including this one. When my GP prescribed me blood tests to the thyroid, I know she was suspecting Hashimoto's disease. But then the results came all normal, and no further explorations were taken. But now there's that scintilography that I did which says that the thyroid gland absorbed high amounts of the radiopharmac and suggest further explorations...

I don't know if it's possible to have a disease in the thyroid while having blood tests normal (T3, T4, TSH) and besides that something that could give the symptoms that I have. But that's something I'm still going to explore with my GP or maybe I visit and endocrinologist.

Well, that's it for now. Sorry for the long post. Thanks for all your support, it means a lot to me in this dark moment of my life.

Kind regards.
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Hi!

So, almost 3 months have passed since my last post. Sometimes I've been feeling a bit better, other times it's a constant living nightmare. Psychologically I'm totally exhausted. I really don't want to keep filling my mind with this all the time, everyday. But it's so hard, it really has to be the part of the body that makes symptoms more difficult to ignore.

Well, I'm still alive. And I still have hope that I can be cured one day or that at least I get better and manage to deal with it without living a miserable life.

This Friday I'm going to see my GP doctor and I will ask her if they have 2 chest x-rays that I did there in the past 6 years. Hopefully they have it and hopefully it features the throat. It would be possible to check if my larynx and epiglottis were already "shorter" on the left side or not.

Of course I don't know if the epiglottis can be visible enough for this in a chest x-ray, but if I get it I will check it with a specialist in imaging to see if it's possible to get to any conclusion.

Kind regards to all.
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@anthonymg

Highly recommend you see a professional for health anxiety and OCD. That is a big portion of what you are dealing with.

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