Greetings,
Wow, am I glad that I just happened to stumble upon this group. It has already helped me save a considerable amount of time and zero in on a provider that is close to me that has experience with ES.
For me, this all really came to a head about eight days ago, when I began to feel like my throat was closing in/swelling. Initially, it felt like tonsillar tissue swelling and hanging down into my throat. I had my tonsils removed ~10 years ago, but some of the tissues have begun to grow back, and on occasion they swell and create a slightly similar feeling. I began to freak out a little, as my airway becoming compromised in some way really terrified me. I went to urgent care, where I was minimized and treated like a child. The doctor gave me a steroid shot in the butt and sent me on my way.
Two days later, what I thought were allergies turned into a major upper respiratory infection. I assumed my throat/tonsils were swollen due to that, but it was very concerning. Finally, on last Friday, it was much worse and I had a hard time not panicking. I finally decided to go to the hospital in case it was some sort of allergy or issue with the epiglottis swelling and creating tracheal issues. This is really what I thought was going on.
At the ER, they measured my O2 levels, which were fine. Mostly, I was trying not to panic but freaking myself out. The tissues in my throat were swollen which were exacerbating whatever issue and it really felt like my airways were slowly closing. They took xrays but were unable to properly image the epiglottis area. The doctor was happy to try to discharge me with no other tests but I knew something was not right with my throat and so he did finally acquiesce and order CT imaging. The CT imaging revealed elongated styloids coinciding with an ES diagnosis, however I was not able to see the imagery myself and the doctor told me I would need an ENT referral as it was something he could not address but it was not life threatening.
Since last week, I have gotten over the infection, and since the airway swelling has decreased, it now feels like a chicken bone lodged in my throat. It is very, very, very uncomfortable, difficult to eat, to swallow, to drink, to lay on my back. And I guess I am just kind of very surprised by this.
I am a healthful-minded person, have put a lot into negating some genetic illnesses I have…fight hard against them, but can say this is the third or fourth in a series of other health issues I have been trying to negate through a healthy lifestyle. So on that note, I’m a little pissed to have one more thing that is getting in the way of living and pursuing goals and dreams. I’ve had a hard time sitting and doing work because the focus required to get things done at a computer also allows me to focus on the pain and discomfort. I imagine I will eventually get used to it. I have noticed it worsening since yesterday however, and that does scare me. I have had perhaps a number of half-symptoms that I just ignored that may be related to this particular thing…vision changes, headaches, neck aches, ringing in ears/noise sensitivity. I also clench my teeth while I sleep. I have rheumathoid arthritis but keep in under control with diet…at least thus far. I do have inflammatory issues every now and then with other organs and tissues.
Now that I have felt sorry for myself in a number of paragraphs, I will say I am very happy to have found some shortcuts here that will make life easier. Knowledge is power and I do already feel empowered. After reading through this site for about two hours earlier today, I was able to cancel my appointment with a local ENT and set up one with a doctor recommended on the surgeon list. My first appointment is early July with Dr. Hackman in Chapel Hill, NC.
I am open to any recommendations for pain/discomfort mitigation…I feel like whatever this is growing worse and will eventually puncture my throat but it’s likely just psychosomatic…I hope. I am really looking forward to connecting with all of you and promise this will be one of the only times I complain, as I see so many of you have had years and years of dealing with this before having a diagnosis. Sending love, light and healing to all of you and you have given me hope after a week of feeling pretty distraught.
Best,
“Elle”