Help severe dysphagia for 7 months suspected upper esophageal sphincter dysfunction
Hello everyone, I hope you are all doing well.
My name is Rute, and I am 28 years old.
Since childhood, I have always had some difficulty swallowing, especially bread and other foods with a dry texture. For many years, I thought this was normal because I believed everyone had more difficulty swallowing certain foods, especially bread. My mother has mentioned several times that when I was a baby, feeding me was very difficult because I often refused food, and now I wonder whether this could already have been related to some swallowing difficulty even back then.
The situation started getting worse when I was around 24 years old. At that time, I began noticing increasing difficulty swallowing bread and even pizza. I would try to chew my food very thoroughly and drink water to help it go down, and usually I managed. However, over time, the situation progressively worsened, and I began having more and more difficulty swallowing solid foods.
At first, I did not pay much attention because I thought it might be something normal. However, about 7 months ago, I completely lost the ability to swallow solid foods. At this point, I cannot eat any solid food at all; I can only consume blended food, smoothies, and liquids. Even blended food has to be extremely smooth and homogeneous, because if it has any thicker texture, I still struggle to swallow it.
I am 1.65 meters tall, and 7 months ago I weighed around 63 kg. I currently weigh 49 kg, which means I have lost approximately 14 kg. I am very thin, very weak, and this situation is affecting me deeply.
My main problem is that when I try to swallow solid foods, it feels as if the food gets stuck in the upper part of my throat, exactly in the area I marked in the image attached to this Reddit post. In addition, it feels as if I do not have enough strength to push the food down, as if it simply builds up in that area.
Lately, the situation has become even worse because even with blended food and liquids I feel something strange: it seems like part of the liquid goes back up toward my nasal area, causing an extremely unpleasant sensation.
On top of that, when I tried to eat solid foods, I felt a strong sensation of tightness and shortness of breath. I have also noticed that whenever I try to eat solids, I am left with an intense tightness in my throat and a kind of tingling sensation, which only improves when I take diazepam, because it seems to relax the muscles.
Since doctors here in Portugal have not been able to diagnose my problem, I started researching medical articles myself and found a YouTube video by Dr. Robert Bastian about Cricopharyngeal Dysfunction (difficulty swallowing, especially solids). After watching it, I realized that many of the symptoms described match mine very closely.
Based on my symptoms, I strongly doubt this is achalasia. I suspect it may be related to a problem at the level of the upper esophageal sphincter.
I was referred by a gastroenterologist in Portugal for a high-resolution esophageal manometry. Unfortunately, the test could not be completed because I have an extremely strong gag reflex. The medical team tried several times, but I started experiencing intense nausea, shortness of breath, and severe discomfort, to the point where I felt like I could die.
At this point, I feel completely desperate because I still cannot eat normally and still have no answers.
I have repeatedly asked doctors to perform a videofluoroscopic swallowing study, but they keep referring me for other tests that I feel may be less relevant to my situation.
The only tests I have not been able to complete are:
- High-resolution esophageal manometry, which unfortunately I could not tolerate.
- Videofluoroscopic swallowing study, which doctors still have not ordered, and I do not understand why.
So far, I have undergone the following tests:
- Nasofibrolaryngoscopy: normal
- Upper digestive endoscopy: normal results, with esophageal biopsies performed to rule out eosinophilic esophagitis, all normal; only mild gastritis was detected
- Blood tests: mild anemia
- Thyroid and neck ultrasound: normal
- Barium swallow study: normal
- Chest X-ray: normal
I feel weaker, thinner, and more distressed every day because of this situation. Living like this, unable to eat normally and without knowing what is really happening, has been extremely difficult for me, both physically and psychologically.
From the bottom of my heart, I would like to ask whether this clinical picture could be compatible with a problem at the level of the upper esophageal sphincter, namely cricopharyngeal dysfunction or another similar disorder.
Some doctors here in Portugal have even told me that there may not be sufficiently advanced technology or specialized expertise available to study the upper phase of swallowing in detail, and that such technology may only exist in the United States.
I would be deeply grateful if anyone who has gone through something similar could share their experience with me: how the process was, what tests they underwent, which doctors they saw, and above all, how they found a solution or improved.
At this moment, any testimony, advice, or guidance could make an enormous difference to me, because I feel lost and increasingly desperate.
Thank you from the bottom of my heart for your attention, patience, and for any help you may be able to give me. 🙏❤️