Hi, I’m a new member and very grateful that my request was accepted and im part of this community…Thank you so much for your prompt and kind reply. I am currently in Lima, Peru, but I live in Illinois. I wasn’t feeling this bad until a few months ago in regards to salivation, a burning sensation on the roof of my mouth, and grinding in roof of mouth and throat. I experience all this and almost tightness in my teeth, mostly on the right side, every time about five minutes after eating or even drinking plainwater. At the time, I didn’t have issues after eating like I do now. I am losing a lot of weight since have this constantly but worsens after a meal or a glass of water.
I started experiencing discomfort in July 2023 I began following a very mild diet and have cut out strong flavors or citrus completely. Because of the pain, symptoms like feeling full too easily, and sometimes coughing, I saw a gastroenterologist who was supposed to perform only an endoscopy. During this procedure, she also dilated my esophagus (without my prior knowledge). I felt horrible that same night. When I messaged the doctor’s office, they told me it was just irritation from the endoscopy, and since they found a bacteria, they prescribed 3 weeks of antibiotics that absolutely made my life miserable. The medication eradicated the helicobacter but since then, I have not been able to eat properly, and I am unsure if that could have aggravated my eagle.
I saw several doctors in the States, and they said I didn’t have anything – even when a CT scan showed an abnormal structure. They told me it was an artifact after redoing the test (this time, they ordered a soft tissue of the neck). In September, I traveled to Lima and went to a maxillofacial who told me that I have some TMJ dysfunction and partial calcification of my styloid (bilateral) and elongation as well. That isn’t shown in the report since radiologists do not know about the condition but I have images .I’m experiencing a sour/acid taste after I eat anything and grinding/clicking on my throat and the roof of my mouth 24/7. I saw another head and neck doctor who suggested physical therapy such as massage on the back of the neck, ultrasound, hot compresses, and massage of the scalenes. I have done the therapy four times, BUT I am very concerned this might worsen my condition.
I also saw a neurologist, and he gave me oxcarbazepine. I’m on my seventh day, and he wants to duplicate my dose, which I’m reluctant to do since I feel worse when I take it. I’m taking Klonopin to lower my anxiety, but it’s not helping much.
I have a few more questions for you or the community in hopes that you are able to guide me regarding recommendations for doctors and how to go about getting a virtual consultation:
- If I have gastritis and eagle, is it recommended to get a manometry or pH impedance to see if that burning also comes from there, or if that would aggravate eagle symptoms since I’ve noticed my gag reflex is altered?
- Have people been helped by any oral medications, such as amitriptyline or duloxetine, or even some stellate ganglion blocks or lidocaine injections? I hope to find even temporarily relieve my discomfort (I desperately need a break!). I’ve also read about pulse treatments .Ive also heard about a Morrison Clinic. Does anyone in the forum has visited that place?
- Are there specific exams besides cervical or TMJ CT scans that I should have done in order to see what those partially ossified ligaments (bilateral)can be obstructing/altering? I did an MRI angiogram, but I would like to rule out everything else before I begin considering surgery. I’ve also read about the endoscopic transcervical approach and microvascular decompression.Have any members done that?
- I also experience explosion sounds when turning my head sideways that seem to come from inside. Could this be caused by my TMJ, or if it is the calcification making the snapping sounds? When I lie down in bed, my head cracks to one side(right) several times. I’m sleeping facing up. The rotation of the head also makes the crunchiness worse, even though I have it all the time, even walking.
- I am very concerned about eating because I have lost a lot of weight over the past few months. I stopped taking Nexium a while back because it didn’t seem to be helping, and one doctor recommended that I stop, but I believe I have gotten worse since then. When another doctor touched the roof of my mouth, it was very painful, and I’ve read that’s classic eagle syndrome.
- Is there a good place to start when finding a doctor? From what I understand from the valuable info on your website, the most experienced doctors seem to be Cognetti, Samji, and Annino… Another doctor also recommended a Samer Al-Khudari in Rush Medical center in Chicago, but I don’t know how to get info on how many surgeries he has done or what is his experience in that realm, and he doesn’t make virtual appointments.
- Can you give me some sense of the costs of styloidectomy without insurance?
I apologize for this long message, but this is the most difficult thing I have ever experienced. I need it to end, but I want to be cautious about ruling out other conditions before jumping into a very scary surgery. I am very grateful for any guidance you can provide at your convenience.
thank you very much and wishing health to everyone!