General/New member several questions thank you in advance

General
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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:

  1. 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?
  2. 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?
  3. 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?
  4. 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.
  5. 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.
  6. 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.
  7. 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!
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Hi!
We’ve had members with gastritis and other digestive issues; these can be caused by irritation of the vagus nerve. I’ve not heard of any members having the tests you mention that I can think of, so not sure if it’s worth you doing these before surgery. Some have had their gag reflex cause issues too because of nerve involvement.
Oral nerve pain meds can help, like Amitriptyline, Gabapentin, Lyrica, Carbamazepine. It can take a while before they work though, and can be trial and error to find one which does. The lidocaine and steroid injections are often done into the tonsillar area guided by ultrasound, and again , they have helped some members, but not always. They’re only a temporary solution though as they can’t be done too often. I don’t know about pulse treatments or the Morrison clinic I’m afraid.
There is a FIESTA MRI which can show how nerves are affected, but it doesn’t seem to be widely available. Usually it’s a matter of having the surgery & seeing what improves! My understanding of MVD is that it’s done when a blood vessel is compressing a nerve, and the surgery is done by putting a mesh in between them. If styloids are causing the irritation then removing them is the permanent solution. The transcervical approach is generally accepted as the best way to remove the styloids (external surgery). Here’s a link to our info page about surgery:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hearing cracks can be calcified ligaments, although people with cervical cranial instability get cracks too, and TMJD can cause that in the jaw area…
Pain in the roof of the mouth isn’t one of the more common ES symptoms but could be from the GP nerve.
I’ll post a link to the Doctors List; all the doctors on there have done at least one successful surgery to have been included, but you’re right that Drs Cognetti, Samji and Annino are experienced. There are others though; Dr Hepworth in CO, Dr Hackman in NC…As far as I’m aware we’ve not had anyone have surgery with Dr Samer Al-Khudari; in the surgery info section I linked there is info in there about questions to ask your doctor. I think one of our members mentioned a site that you can look up doctors on which lists their experience but I can’t remember it I’m afraid!
Here’s the link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I don’t know about surgery costs, it does vary, hopefully others can help you with that one, as we’ve had some Canadian members who’ve travelled for surgery.

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Hi @Eli -

In light of this information, I think it’s possible that part of your gastritis symptoms are the result of the antibiotic killing too much of your good gut flora which could cause C diff - an overload of “bad” bacteria in your gut. I understand that the antibiotic was meant to kill a specific bacteria (that perhaps was causing ulcers?) but unfortunately, antibiotics aren’t discriminating so the good bacteria also dies & more anti-biotic resistant strains of the wrong sort can remain. Have you tried taking a good prebiotic & probiotic since the antibiotic? Sadly, the good ones are expensive & often need refrigeration. One that’s less expensive & used to be available over the counter in the US is called Lactinex. It comes in a powder or chewable tablet form. It’s kept in the pharmacy area of stores like CVS, Walgreens, Target, etc., and isn’t always in stock. Another good source of quality pre & probiotics are “health food stores” such as Whole Foods & Sprouts. I think getting started on a pre/probiotic could be very helpful for your gut.

I agree w/ @ Jules that you most likely don’t need the manometry or pH impedance testing as the burning in your mouth is mostly likely from an irritated glossopharyngeal nerve (often a victim of elongated styloids). A CT scan of the area from skull base to hyoid bone focusing on the styloids & stylohyoid ligaments & hyoid is the best diagnostic tool for finding ES. A TMJ CT wouldn’t be too helpful as it will focus on the jaw joints & may not show the styloids, ligaments & hyoid bone.

Regarding Dr. Al-Khudari, you could call his office & ask for information about his experience as an ES surgeon. His front office staff should know if he frequently sees ES patients & does ES surgery. You shouldn’t need an appt. to get that info.

As Jules noted, the cost for ES surgery w/o insurance varies greatly from doctor to doctor. Many don’t set their own fees as they work under the umbrella of a larger medical organization. Most medical practices do offer a substantial discount for cash paying patients, & I recall hearing in the past that sometimes you can negotiate the price w/ the business office, but I don’t know how flexible their prices are.

Jules has given you other great information to help you on your journey. Please let us know of any other questions you have.

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@Jules thank you so so much for your reply, really appreciate your time. ill probably have more questions .the ph impedance is to measure your ph levels to see if it could be some sort of reflux even if biliar. I am just very uncomfortable and surprised on how much worse I’ve gotten recently .Not sure if to has to do after taking the oxcarbazepine . 5 mins after eating (everytime and no matter what I eat)I get this burning sensation on roof of mouth and almost grinding in throat is unbearable and acid taste.

@Isaiah_40_31 Thank you so much for the info and taking the time again in replying . I agree that those antibiotics were nasty and will follow on your probiotic suggestions upon arrival to the states. i dod take Bio-k for a couple of weeks but wasn’t able to bring them here .

I do have some images from a cervical ct scan w 3d and tmj scan that shows the elongated and partially calcified styloids (bilateral) that the maxillofacial was able to saw, but they were never seen/ noted in the written report . I asked them after the maxillofacial pointed them out to measure them (in two different clinics radiology departments) and they show conflicting info,which im confused so not sure if perhaps I can upload and someone might be able to read them? the first one that measures a longer ones( 51.52 mm right side and 55.14 left, although most of my pain and issues are on the right) is where I got the initial ct scan of my jaw and panoramic xray and came back to them for measurements and the other one by a radiologist on another clinic that only mentions 2.77 on right and 2.15 on left? I hope I can include them here if ok . I know Isaiah mentioned this exam but was hoping I didn’t need to do "A CT scan of the area from skull base to hyoid bone focusing on the styloids & stylohyoid ligaments & hyoid "

In regards of insurance right now I only have Molina Medicaid Illinois (and able to switch to another Medicaid plan until the 31st)so I don’t think that would help me much less I switch to bluecrossblueshield medicaid but understand that only works in Illinois.
In the case that I take a private insurance do you recommend one that most of the members have used or ar more broadly accepted nation wide one? or again it would just depend on the facility and dr that would see me? I just dont know if insurance works outside the state you reside and also if even medicaid managed plans would be helpful( in case that there’s no one that treats the condition near from where you live).Sorry If I am being insistent but I am just trying to find some info with people that has already gone through this and perhaps get some tips on steps/guide to follow in regards of insurance as well. I guess there must be a cpt code for ballpark price for styloidectomy w private insurance?Please ignore if all this is something that you aren’t aware of ,but thought someone might know and use the most helpful guidance that I’ve had so far (this blog). Thank you again for all your help and patience!!! Eli

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hi @Isaiah_40_31 I am unsure on how I can post the styloid images that I have or send them to you directly ?
Thank you
Eli

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@Eli - Below is an image of the symbols at the top of this text box. I’ve circled, in red, the symbol used for uploading images from your computer to this thread. If that doesn’t work for you, you can try dragging & dropping the image into the text box. If you want to send it to me via PM, then click on my screen name above this post.

Upload button
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@Eli - Since you’ve already had a CT scan that shows your elongated styloids, you may not need to get another one. You can ask the radiology lab where the CT was done to please rewrite your report to add an addendum regarding the elongated styloids visible in the images. Even if they won’t do the addendum, a knowledgeable ES doctor should be willing to accept the scan w/ the current report as those doctors often re-measure the styloids themselves.

I see what you mean about the discrepancy between styloid lengths in the two different measurements. It’s quite difficult to accurately measure the styloids from CT images because they’re done in slices but the measurements should be that far apart. I expect the longer measurements are more accurate, but even if they aren’t, short styloids can still cause terrible symptoms based on some of their physical features.

Something we recommend for our members w/ burning tongue syndrome which is caused by the same nerve that’s irritating the roof of your mouth is to rinse/swish a mixture of water & bicarbonate of soda (baking soda). I’m not sure of the concentration, but you can experiment w/ that. Try doing the rinse when the nerve is flared up to see if it helps reduce the burning. Another option is to try the rinse prior to eating to see if that keeps it down a bit. Here’s a link from Mayo Clinic that might be helpful. One thing suggested on the Mayo site is drink plenty of water. This is helpful because it keeps the saliva more dilute which might make a difference for you. I drink 70-100 oz water/herb tea/day. It helps keep my first bite syndrome symptoms away: Burning mouth syndrome - Diagnosis and treatment - Mayo Clinic.

Regarding insurance, I don’t know exactly how Medicaid works but there are some doctors who won’t accept it. If you can get private insurance, Blue Cross & Blue Shield are widely accepted & might allow you to go out of state for surgery. You’d have to check on that before buying the insurance plan. If possible, it would be good to check w/ the offices of the doctors you want to see & ask for a list of the insurances they take. Here is a link that describes different types of insurance programs. I recommend PPOs as I feel they have the most flexibility with whom you can see & will pay for out of network doctors but at a lower rate than in network. I’m not very familiar w/ EPO & POS plans. Stay away from HMOs as they’re very restrictive.

Doctors bill insurance companies a higher rate than a cash paying patient. The ranges I’ve seen recently on here are from $30K-$50K for a single styloidectomy. Dr. Cognetti’s ofc used to charge under $10K for cash payment, but I’ve heard his rate has gone up considerably. He doesn’t set the rate. The hospital at which he works does that. I think the cost can be appealed through the business office though & maybe through the doctor.

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