Trying to get diagnosed ... with something

General
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Hello all. This is my first post and I apologize if it's long. Some history: I'm male, 39 generally healthy, other than having eczema. I eat low carb, few sweets, low to moderate alcohol consumption. I'm thin, not overweight at all. Don't take any meds, other than topical steroid cream for the eczema and that's just occassionally.

I'm not sure I have ES, as I'm still going from doctor to doctor to try to figure out what's ailing me. I started noticing that I was having a "twinge" or weird sensation when turning my head to the side and swallowing or talking. I told my dentist back in February, and he said if it got worse, he could refer me to an oral surgeon, but didn't see or feel anything.

In early July I woke up with what I thought was a sore throat. It feels like I have a pill or vitamin stuck in my throat that I can't get down.

I also noticed that my mouth has been very sensitive. Salty things are almost painful and I have a funny feeling and taste in my mouth all the time.

I asked a friend (endodontist) and his wife (orthodontist) if they'd ever heard of anything like this. She told me the turning your head thing can be a sign of ES, but that it was rare, and that metallic taste is often a reaction to medication or can be something like an abscess or gum disease. I don't have either.

I went to my general practitioner about a week after I started having difficulty swallowing. They did a strep test (negative), then after it didn't clear up in a few days gave me antibiotics and oral steroids, which didn't do anything.

During that time, I developed a severe pain on my tongue. About halfway back on the right side, felt like someone was cutting it. After a few minutes, it would go away. That happened intermittently 3 or 4 days.

They also said it was likely GERD and started me on nexium. I never felt any heartburn or reflux, until I started taking the little purple pill. They booked me for a GI doc, which I will see later this week.

It seems like it's worst when I wake up in the morning (I sleep on my stomach). So I'm not sure if that supports GERD as I'm horizontal.

I saw an ENT. He had a barium swallow fluoroscopy done. Everything normal. He looked at my vocal cords with a flexible light/scope and didn't see anything. He agreed I should go the GI next. I asked him straight out if it could be ES, as a dentist had mentioned it to me. I have no idea what his experience with ES is, but he reached in my mouth and pressed way back somewhere near my tonsils with his fingers and pressed good enough to make me gag. He said he didn't feel the styloid. I didn't think to ask what other test he could do to rule it out.

So now I wait. I hope I get diagnosed with something, just to know, but I'm afraid to find out. If the GI doesn't have anything, then I'm not sure where I'll turn. Thanks for letting me vent. I welcome any thoughts or ideas.

--Brian

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Hi Brian,

It sounds familiar to me. Actually, this is almost exactly how my ES progressed. They made me do the testing for GI stuff although that seemed ridiculous to me. I actually had to come up with the diagnosis on my own, and then request a CT scan. Then I had to find my own surgeon (on the other side of the country.)

I hope you get diagnosed correctly soon, and that you can get a surgery date with a quality surgeon. There is a good list that Emma made on here. I had several doctors tell me I didn't have ES before I got to an experienced surgeon who agreed to operate. Complete relief of "double ear infections" "strep throat" "laryngitis," and more.

I don't know where you live, but I had no luck in WA state or OR. I found my surgeon, David Cognetti, in Philadelphia PA.

Good luck!

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I forgot to mention that, for the sensation that something was stuck in my throat, it helped to take a medicine that thinned my saliva. It was just some type of cold medicine or allergy med or something. I'm sorry that I forgot what it was. Anyway, I think a little ball of phlegm was collecting on the styloid or something. (Sorry for the image.)

Also, popsicles were my saving grace while I waited for surgery. I'd eat up to 30 in a night. I ate them very fast so my throat felt frozen. Kind of a crazy lifestyle, but hey, when it gets bad enough you lose all pride and you do whatever works. Also, I wore a cervical collar to drive- made a giant difference.

Best wishes!

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Thank you. I'm near Dallas, Texas. I did see the list of doctors/surgeons and it does look like there is one near here (Plano or Allen). I hope I can get this figured out before mine progresses that much. I'm not in pain, yet, just a lot of discomfort and frustration.

eagleheart said:

I forgot to mention that, for the sensation that something was stuck in my throat, it helped to take a medicine that thinned my saliva. It was just some type of cold medicine or allergy med or something. I'm sorry that I forgot what it was. Anyway, I think a little ball of phlegm was collecting on the styloid or something. (Sorry for the image.)

Also, popsicles were my saving grace while I waited for surgery. I'd eat up to 30 in a night. I ate them very fast so my throat felt frozen. Kind of a crazy lifestyle, but hey, when it gets bad enough you lose all pride and you do whatever works. Also, I wore a cervical collar to drive- made a giant difference.

Best wishes!

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Yes,. it can be either or both.

I am convinced( my own opinion) that GERD can be caused by ES..

GERD and Eagles have many similar symptoms. I recommend you also have a gastroenterologist do an EGD. It is a painless test but you will need to have a family member drive you to the procedure and stay with you that day. It will help to determine if you have GERD. The swallowing issue may also be a symptom of GERD.

Following the diet, taking medication and raising the bed will likely all help reduce GERD symptoms but will not always reduce the ES symptoms but may reduce some.

I have both ES and GERD. The vagus nerve runs from the styloid to the digestive system on the left side. From the styloid to the heart on the right and it connects somewhere else in the body. It is called the wandering nerve. The vagus nerve can actually cause high acid production. Therefore, my observation, if you have a styloid putting pressure on the vagus nerve you can have GERD. Hence you have ES and GERD. My gastro agrees this is possible, my ENT not so much. Your symptoms seem a lot like GERD, but could, in my lay opinion, be caused by Eagles. (Do not try to convince the doctors, just get the tests first.

Getting a good CT scan of the styloids and measurements of the length of the styloids will also help determine if you have ES.

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Well, I saw the GI doc this morning. After reviewing everything, he told me he did not know what was wrong with me. He said he did not think he would find anything on an EGD. He said he would do one, to rule things out, and might do a "stretching" of the whole esophagus if he found anything while he was in there to indicate it was necessary. But he thought it unlikely that I have 1.) a stricture or 2.) motility issues, which are the two main things he would think could cause my issue.

I am mad that I forgot to ask why he would not do a pH probe first? My understanding is that a EGD doesn't disprove GERD, but can show evidence of damage from it or disfunction/misformation of the pylorus.

I am not crazy about the expense and risk (albeit slight) of a test under general anesthesia. I asked him what would be the next step if the EGD found nothing? He said he would send me back to my primary doctor.

I think at this point, I'm going to schedule an appt with my GP. When I first went in, I saw the Physician's Assts, not the doctor himself. Of course, my primary doc is on vacation for 2 weeks, so I either wait for him, see a different doc at his office, or directly contact a different specialist myself.

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emma said:

Yes,. it can be either or both.

I am convinced( my own opinion) that GERD can be caused by ES..

GERD and Eagles have many similar symptoms. I recommend you also have a gastroenterologist do an EGD. It is a painless test but you will need to have a family member drive you to the procedure and stay with you that day. It will help to determine if you have GERD. The swallowing issue may also be a symptom of GERD.

Following the diet, taking medication and raising the bed will likely all help reduce GERD symptoms but will not always reduce the ES symptoms but may reduce some.

I have both ES and GERD. The vagus nerve runs from the styloid to the digestive system on the left side. From the styloid to the heart on the right and it connects somewhere else in the body. It is called the wandering nerve. The vagus nerve can actually cause high acid production. Therefore, my observation, if you have a styloid putting pressure on the vagus nerve you can have GERD. Hence you have ES and GERD. My gastro agrees this is possible, my ENT not so much. Your symptoms seem a lot like GERD, but could, in my lay opinion, be caused by Eagles. (Do not try to convince the doctors, just get the tests first.

Getting a good CT scan of the styloids and measurements of the length of the styloids will also help determine if you have ES.

Thank you, Emma. My daughter had some heart surgeries as an infant and has had lots of GI problems. One GI doc said that GI's see lots of "cardio kids" and that this can be due to some of these nerves like the vagus being severed during the heart procedures (but he said the cardio docs will all tell you it's not related). So I could certainly see nerve impingement causing GERD.

Would my primary care doc be able to order a CT and interpret it?

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The EGD is not normally general anesthesia. They use to use Versed, now some are using an even less mind altering anesthetic. You are not completely out, but you don't know it. You come back as if you were under general anesthesia. The difference is no breathing tube and non of the nauseating and headachy side effects. For me it was a restful feeling. Don't be surprised if the EGD does find a polyp or some other thing, that does get corrected but still may not be the cause of your pain or some of it.

I would say that your primary could request the CT scan to be taken specifically of the temporal styloids with measurements and then the radiologist should be able to interpret enough for your Primary care. Take note that you will now have the CT scan to take or send it to more experienced doctors. That will depend on how much your primary care is willing to believe in you.

Eagleheart's suggestions are all right on, they were for me. I also used the medication in Mucinex or one of the generics to thin my phlegm in my throat. It seemed to help. Also, popsicles or cold stuff. I didn't need the popsicles as aggressively as she did.

There is nothing to rule out that our problems are 2 separate problems. Lousy but true.

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to all;

One of my symptoms has been diagnosed as a plugged Eustachian tube from all the swelling. It keeps my ear from relieving pressure but also causes a build-up of gunk in my inner ear which gets infected regularly. I had a pressure test and the pressure difference across my eardrum was 119 somethings on the left and 12 on the right ear. My non-surgical ENT (I've collected a lot of those) said this proved that it is plugging up and could explain my hearing loss in my left ear since the pressure keep my eardrum from moving. He gave me a decongestant that dried me all up but did reduce the ear pain.

The drainage causes gagging which brings up stomach acid-so I think I might have symptoms of GERD if not it.

This ES has many ancillary symptoms.

Thanks for the Vagus nerve info--that would explain a lot.

shawn

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Brian;

The symptoms all sound like ES. I've had many ENT's palpate the rear of my throat and feel nothing but I can point to it every time. The surgeon I have now touched it immediately. Which is a good sign of knowledge-he didn't dig around with me ending up hurting more than I when got there-or pushing on it really hard asking does this hurt?

Can you feel something back there? You'd know better than any doctor since it is your mouth. I had to convince a doctor once that there wasn't something there and now there is. I'd suggest a straight on x-ray, a panoramic x-ray, a CT of the neck or a mastoid x-ray series-all showed mine very well during the last 25 years of dealing with this at various stages of medical nonsense. The panorex was the first and best picture I had-from an oral surgeon. Mine started with 1 year of swelling and pain in my tonsil area and when it went down, a bone arrived. The thought is that as the styloid elongated it irritated the tissue and when it stopped growing the swelling went down. The tongue pain is very familiar-like I bit it where I can't bite it-but it varies in severity. Any ear pain? Do you feel actually something that feels hard like a vitamin in the back of your throat under the tissue near your tonsils are or where they were? There is throat pain all the time but worse when swallowing. I will tell you what I do to point people to it--but do it at your own discretion-very lightly run your finger along the back of your throat between the lower jaw and your tongue where it hurts up to the top of the back of your throat. You might gag but my styloid is the thing that is making me gag slightly all the time bringing up acid-it's their theory on the acid. See if you feel something just for your own satisfaction. All your symptoms could be related to any number of causes but here they all point to ES.

When I first had my symptoms on the right side in 1989 I had allergy tests, antibiotics many times for the non-existent infection, 4 oral steroid cycles, pain meds, diagnosis of a deviated septum plus the offer to fix my nose too, over 1 year with many specialists-as with many here misdiagnosis was the most common diagnosis. The funny thing is I found out what it was by describing over the phone to my orthodontist in Colorado-he said "you have eagle's syndrome you need a panoramic x-ray" and then he called a friend here in LA and set it up and it was removed in 2 months with all symptoms gone. When I got it on the left side I knew what it was and needed no doctor to diagnose me. But it still hurt though.

Welcome to the neighborhood-there is a great deal of experience and experiences here that you might benefit from and hopefully provide information so you don't waste time with doctors who won't act, or will diagnose but not treat.

Shawn

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Shawn, thanks for the reply. No ear pain. I tried feeling around, but can't tell if the left and right sides are different. I get the stuck pill feeling down in my throat like near my adam's apple. But yes, I have a sore throat feeling all the time, worse at night and when I wake up in the morning.

It is good to know that just because ENT#1 didn't feel anything manually, that's not a conclusive diagnosis.

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Well, I decided not to see another doc in my primary physician's office, but just to schedule an appointment directly with Dr. Ragsdale, who is listed on the surgeon's list here. I asked his office if it would be beneficial to have my primary doc order a CT first, as I live about 40 miles from his office, but they said just to come in first. But I was able to get an appt this week!

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this is mine.