Im new....need advice

Hello all. I have been having symptoms for about a year. Started out with a painful dry spot near L tonsil in throat Sept 2017. Doctor told me it was from silent reflux (which I did have at the time). Went on the acid reflux meds and got pregnant in late October.
Pain in my throat kinda went away for a few months but came back april/March this year. Along with many other symptoms: L eye pain, L neck pain, L ear pain, pain with swallowing on L side only, L sided headaches, pain in my L teeth, pain in a particular spot in my neck on L side near carotid artery and end of hyoid bone, and the feeling something was poking into my throat. Little bits of dry food (granola bars, bread, oatmeal) also get stuck in throat, I have to gulp a bunch of liquid if I feel its stuck. Pain is not always there. Sometimes the feeling that something is poking me is not painful, just annoying. Other times it is so painful I want to take strong pain meds. Went to the doctor a few times. They told me it was carotidinia. Got an MRI. nope not it. Then they told me it was tonsil stones. Well I get little tiny white spots that are like cottage cheese but those are on both sides so that is not it. That doctor just wanted me out of his office he was not very helpful.

Went to a different ENT doctor again after gave birth bc I had TERRIBLE neck pain and the feeling of something stuck in throat near tonsil. He suggested eagles syndrome and I got a CT. Radiology report said no abnormalities. I was glad but at the same time very frustrated bc why was I having so much pain???

My pain is usually better in the morning. I have been going to PT since march. That has helped my neck pain but it just wont go away. Anyway went to doctor again today bc pain has recently gotten worse. He said he does see bits of calcified ligament that are not connected on my CT but he doesn’t think it would cause my symptoms. He says I could try to get an injection and see if that helps. If it doesn’t he can remove tonsil and while he is in there look for a bone. And if he sees a bone he says he can break it off real easy like a toothpick. Any advice what I should do? this injection wounds scary. So does surgery. I just want the pain to go away.

Hi Wendy,

Your symptoms sure sound a lot like ES symptoms. I’d ask for the radiologist to read your scans again & measure your styloids (again if it was already done) & specifically look for calcification in the stylo-hyoid ligaments. ES is defined as elongation (longer than 2.54 cm) of the styloid process(es) or calcification of the stylohyoid ligament(s) or a combination of both. It’s possible your CT scan was misread or that the radiologist who read it has a different understanding of what’s classified as ES. Additionally, it’s not always the length of the styloids but the angle at which they’re growing & how thick they are. A short fat styloid w/ an odd angle to it can be just as detrimental as an elongated styloid depending on what tissues it’s irritating.

Your ENT’s suggestion of getting a shot (lidocaine or cortisone are most commonly used) in the area of your neck near the left styloid would be telling for you. If your pain goes away, even briefly, then there’s a good chance you’ve been misdiagnosed & do have ES. Having your tonsils removed might or might not help w/ some of your symptoms but DO NOT let the doctor “break off the bone”. There are doctors who think that is the solution to ES but it can cause more symptoms or worsen existing symptoms because a sharp & potentially jagged tip is left on the remaining styloid. That tip can go on to wreak its own havoc in your neck. Styloid removal at the skull base is the optimal “cure” for ES, & that is done through the neck not the throat as the throat doesn’t allow full access to the styloid.

It is possible that the calcification your ENT sees on your ligaments is causing ES type symptoms. The ligaments are designed to be somewhat mobile, & when they get even small patches of calcification, their ability to move as they should becomes limited thus causing the potential for nerve, muscle & vascular irritation.

It would be worth it to get a third opinion. You can check the US ES Doctors’ List to see if there is a doctor listed in your area. I’m attaching the link to the list for you.EaglesSyndromeUSDoctors August 2017.docx (38.3 KB)

Thank you so much for replying and advice. He did mention my styloid looked like normal length. But he didn’t say length. Yeah I think I am going to get the injection and see what happens. So if it was muscular would the injection help? If it’s eagles it would help also? I am going to ask the doctor these questions too. He said it is lidocaine just like what you get at dentist.

I can feel hard bumps in my neck along where the stylo hyoid ligament would be that I can move that I am pretty sure are the calcified parts. The one closest to my tonsil area and hyoid bone area is where the pain is. I can feel pain that is replicated and goes up to my eye when I press there.

I also mentioned that my tonsils have a hard bone feeling in them. But there is no pain when I push on it. I am confused what that means the doctor seemed confused too bc it doesn’t produce pain to push on it. Does anyone else have a hard bony feeling on top of tonsils?

Quite a few members have tried the lidocaine injections, & some doctors use it as a diagnostic tool for ES- if it works, it confirms it for doctors. Although there have been a few members who haven’t found it helps. Sometimes steroids are injected too to calm inflammation. It might be worth trying for you; I was never offered it, so I can’t say personally whether it helps or not…
Isaiah’s given you good advice about re-reading the CT & other doctors to try. (BTW, a lot of doctors have strange ideas about what styloid length is ‘elongated’- I’ve seen mention in research papers anything from 1.5cms- 4cms as being ‘average’! So it could be that yours is on the long side, but that your doctor doesn’t class it as that.
Hope that you’re able to get some help soon- use the time if you can to inform yourself as much as possible (lots of info in the Newbies Guide section if you’ve not already read it), which will help you if you need to argue your case.

Hi Wendy! I have a bony protuberance by my right tonsil that I found myself. It initially felt like a thin fishhook but now seems to be covered by something-?calcifications. I tried wiggling it once…bad mistake. I actually had a tooth extracted-probably unnecessarily because of pain in the jaw/tooth on that side before the diagnosis of Eagles Syndrome was found. Eagles may be why you are having tooth pain.

I have received lidocaine and steroid injections in my neck. My first ENT did it to see if it helped and the confirm the diagnosis. Another ENT ordered CT and ultrasound guided steroid and lidocaine injections done by and interventional radiologist. I did this for 1.5 years and then stopped them for other health issues. The injections did help me. I find that my muscles seem to tighten up a lot in the neck, especially on my left side where my styloid is longer so if I do some very gentle neck stretches to stretch the ligament it helps. Best wishes to you on your journey!

So I got the injection this morning and It did provide relief. but I can feel the pain start to come creeping back. I saw a different doctor for the injection and he said he has done surgeries on ES patients. he just recently did one on a lady where her styloid processes were so long if she turned her head she fainted. He said I could either have problems with my tonsils which I do have tonsil stones, or a problem with my stylo-hyoid and ligament, or a problem with my hyoid bone. he did say my hyoid bone felt very long. He wants to try to remove my tonsils and see if that helps and while he’s in there if he is able to see the bone he can clip it off. Once again another doctor that wants to clip it off. Then wait a while after the tonsil surgery and see how my pain is. If it’s still there then go in from my neck to remove the Stylo-hyoid ligament. Should I just go ahead and get my tonsils removed? He did say he could not feel the end of my styloid while poking into my throat so he thinks it’s more of a calcified ligament issue.

Glad you tried the lidocaine injection. A steroid injection might be more enduring as far as keeping pain away, but at least you had a bit of pain removal from the lidocaine.

The second doctor you saw sounds more ES educated, but I would advocate for him to confirm stylo-hyoid calcification via a CT scan then have the calcified ligament(s) removed via your neck & skip the tonsillectomy for now. Both tonsillectomy & styloidectomy are pretty major surgeries as far as recovery goes.

Calcified ligaments/elongated styloids can impinge on vital vascular tissues (carotid arteries & jugular vein) & tangle with cranial nerves (which cause a multitude of ES symptoms). If a scan shows ligament calcification, I would opt for ligament removal before tonsil removal as that will most likely be more helpful in eradicating your symptoms.

My CT scan shows a calcified ligament it appears to be in sections, again that could be wrong It’s what I have read from other users posts on here that the ct scan doesn’t always show everything… I have a picture of it uploaded here. He said he likes to see the actual image in 3D. So I called the place that did my CT scan and they can’t bc they archived my scan. I still have the CD and I thought that the doctor should be able to convert it it to 3D but who knows.

So I will call them back and ask about taking out the styloid first. I do want to get a second opinion. I live in NE Indiana so I am going to try to get into the doctor that is in the list in Indianapolis for a 2nd opinion.

And I do want to get my cat scan re read specifically looking at my styloid and ligament so I need to find out who read them

Seems like if your scan is only archived & not deleted, they still have it & could pull it out of the archive to do what you asked. I wonder why they said they can’t do it.

My ligaments were both partially calcified & looked like dotted lines extending from my hyoid bone toward my styloids. Below is one of my 3-D scans so you can see what I mean. I had both styloids & both s-h ligaments removed.

My doctor wants to remove my tonsils first. Then if I still have problems remove my styloid externally. I want to get a 2nd opinion from one of the doctors on the list but it just stinks bc I’ve met my max out of pocket this year which is $6,000 mainly from having a baby and I don’t want to meet again next year. My ENT doctor is able to fit me into his surgery schedule still this year. And I don’t even know if the other doctors on that list are in my network. My husband says I should just listen to the doctor and not some strangers on s website but I don’t think he really understands. He hasn’t researched and read about it like I have. I don’t want to screw up my neck for the rest of my life bc I let a doctor take out my tonsils first and possibly snap off my calcified ligament while he’s in there if he sees it.

Interesting. I tried to make my scans into 3D using the guide posted on this website a few weeks ago but my image was so unclear and choppy. How did you get yours to look so clear? Or was that done by the imaging place? I still have my cd so you’d think the imaging place could use my cd to make it 3D, I asked them but they said no.

Hi Wendy!
My 3d CT is clear because it was done by the radiology dept that did my CT. They included four 3D pics w/ the CT slices. I was very thankful not to have to try to create 3D images because I’m seriously tech challenged. :stuck_out_tongue_winking_eye:

As far as having the tonsil surgery goes, it does sound like you might benefit from having your tonsils removed especially since you have tonsil stones; however, I would make it EXCEEDINGLY CLEAR to your ENT that you don’t want your calcified ligament(s) “snapped off” during the tonsillectomy. Let him know that you’ve done research that contraindicates that method of dealing with Eagle Syndrome, and you’d prefer to have them completely removed via the external route (i.e. through your neck). You could contact the other doctor(s) office(s) nearer to you that are on the ES list to see if they take your insurance. Most doctors will give a second opinion consultation by phone or video conference call if you don’t live near their offices but there will be a charge for that (insurance often pays for it). That would be a topic to explore if you decide to pursue the insurance question.

Sadly, our friends & spouses will never understand what we experience as far as pain & other odd/scary symptoms of ES go. I understand how your husband feels as mine was the same way. We joke about how thick his “tinfoil hat” is. He was upset that I was spending any time on this forum & especially that I was giving out personal information (i.e. my first name & my symptoms, etc.). Now I actually meet w/ people who come to CA for surgery w/ Dr. Samji from other states or farther away in CA. It has been a wonderful experience.

I hope you’re able to get a second opinion soon so you can make an informed decision regarding your surgery.

Congrats on being a new momma! How exciting!! I hope you have an easy baby. :blush: