Connect
← Return to Possible permanent epiglottic damage from allergies or bacteria
Discussion
Possible permanent epiglottic damage from allergies or bacteria
Ear, Nose & Throat (ENT) | Last Active: Apr 5, 2022 | Replies (31)Comment receiving replies
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.
Replies to "Continued form prior post "I suffered as never before. I dealt with the worst anxiety ever...."
Connect
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