My Eagle Syndrome diagnosis/vent

My mind is a little blown by the diagnosis I received today. I was told by two different ENT’s that I had a “Level 2 Tonsil Stone” and after HOURS of time, stress and money spent trying to figure out a way to get it out by myself (now proving futile) that it could only be removed surgically via tonsillectomy. I had the procedure done today and during the surgery they saw that it was actually the styloid process that was protruding through my tonsil. The symptoms line up very closely with the symptoms I have been having. Unfortunately I think because I was shufled between various providers it wasn’t put together. Even though I specifically asked the ENT if there could be a bone back there because it FELT LIKE A BONE and it was! Great news that I’m not crazy but dealing with this for going on 5 months not knowing why I have been in so much pain and being sent between each provider, oral surgeon, dentist, neurosurgeon, and ENT made me thought I was. In all my google research I can’t believe I didn’t run across this syndrome.

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PRE^PAN^R^Kimberly_Surla^20210719^000

Here’s a panorex view of a CBCT I had at oral surgeon in July. This was a follow up for pain I was having 6 weeks after the tooth that is missing was pulled and bone grafted in prep for implant. Pretty noticeable now that I know what I’m looking for.

The longer one on the left side of my face is the one that had a portion removed today during my tonsillectomy.

OMG! I had tonsil stones when I was young and had to manually get them out on my own. Ihad alot of strep throat in my teens and eventually had my tonsils and adnoids out at age 17.
My daughter age 27 also has tonsil stones. She has a special syringe she shoots water on them and I think uses a variety of q-tips and other tools to clean them out. ENT’s apparently don’t like to take tonsils out anymore for tonsil stones due to higher risks from surgery and argue against it. They told her to live with it.

Based on your experience and these docs incompetence, I would run from this particular group of ENT’s! They just put you thru an unnecessary surgery and a painful one at that. Find a good ENT who actually has expertise in Eagles. The only thing I would do, is demand this ENT do for you is order a regular CT scan (not a CBCT) of your neck for evaluation of Eagles and get some lengths on those spikes for the specialist that will require the scan prior to accepting you as a patient. Find a doc you want to see and tell this doc to send in a referral (if you need one). Hope that helps!
Also order thru patient record requests your patient records from all these docs as well as the “Operative Report” for this surgery.

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I too had alot of pain after a recent tooth extraction and bone graft prep however I had already had eagles surgery.
I didn’t realize they took a portion of the styloid out while doing your tonsil removal when I made my last post. There has been some concerns by many patients that not all the styloid process is removed up to the skull base, also removal of calcification of ligaments by some surgeons so they continue to have pain because it wasnt all removed. I encourage you to get that regular CT scan to evaluate what is still there, if anything. Its not uncommon for the other side to act up after just removal on one side.

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I was surprised myself but this practice recommended the tonsillectomy on my first visit there, and I had never even heard of tonsil stones before. I suppose due ot the size of the “stone” but other than advising me that it would be a painful two weeks they said it was my decision. I ended up scheduling it because I had met my deductible with all of my health visits this year and it was financially better to have it done this year. In a twisted way, I’m glad I did otherwise I might not have known about this diagnosis. I’m anxious to see how I feel once I’m healed up and if my jaw & tooth pain goes away that I had attributed to TMJD or possibly atypical Trigeminal Neuralgia.

I have had a CT scan of my sinus - do you think that would show the neck? I tried to find the CD last night to check and see if I could see anything but I think I may have left it with the ENT. I also had a brain MRI ordered by the neurologist because of the facial and tooth pain I was having that according to my dentist was not due to any dental issues. The CBCT scan was taken to access my extraction site, but I just noticed that the styloid process could be seen there.

Thank you for the advice! I’m trying to find a doctor that specializes for a consult. I live in Louisiana and was going to see if I could find a doctor in the metro New Orleans area but if I Have to I will drive to the ones that are listed in Baton Rouge.

Yes, I forgot to put that in my post but it is in my bio. He sent me a picture of what was removed and it was right over 1.5 cm that he removed. When he called to check on me last night, he said he cut through the muscle and cut as far as he could and placed stitches. I will have lots more questions for him at the follow up.

I would still request another CT scan of neck regardless of what you have been told as you will likely want to see an ES specialist to evaluate it all and the other side. Some docs to external ES surgeries and others prefer internal or what is called intraoral which is what you had.
A CT scan of sinus will likely not show your neck. You would need a specific CT scan with an order stating evaluation for Eagles syndrome w/ measurements. A CBCT will give you some view of styloids but not all the detailed info you would need to measure them, etc as a CT scan done for the purpose of Eagles evaluation.

I get what you mean about taking advantage of meeting deductibles :rofl: I too have TMJD and the extraction and bone graft procedure put me in massive pain in June. This after a failed root canal procedure. It also triggered major vertigo event. I went in to TMJ specialist and had some injections and topical creams which really didnt prove all that helpful at the time. It was a pretty horrific experience. TMJ specialist said based on my bruising, it appeared to be an aggressive extraction. The oral surgeon was aware of my TMJ in advance. To this day, I dont know what really happened, I just know I was in so much pain, I just wanted to be knocked out and put in a coma until it all passed. Way worse than my Eagles pain. I couldnt understand how I could come out of 2 ES surgeries without pain complications and a simple tooth extraction wreak such havoc. Im afraid now to have my teeth touched. No doubt my entire Trigeminal nerve branches were on fire on the top and bottom of my mouth all the way to my front teeth.

I still wonder if I had a reaction to the bone graft? IT is bovine which I assume was yours. About 4 days out from extraction, I had fever blisters rupture below the corner of my mouth. Ive never had HPV. There was mention of shingles but that was discounted as it went away so fast. TMJ docs says virus’s can hide out in those nerves and come out with stress. I’m curious about your experience.

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Oh my goodness. That is so frustrating. But I hope maybe you will get some relief in your throat from the tonsillectomy at least?! And hopefully now you are on the right track. Keep us posted…

Tonsil issues seem to be pretty common with eagle syndrome. I do have tonsil stones but only in my right one and my right tonsil (same side of my pain) is huge compared to the left. I went to my ENT for the first time thinking I had tonsillitis my throat hurt so bad in such a weird way. Thankfully I got lucky and went to an ENT knowledgeable about eagle syndrome. He actually told me a less discerning ENT would probably just tell me to get my tonsils out but he didn’t think it would help. I am four weeks out from styloid removal and so far I’m feeling pretty good! Super curious to see if my tonsil eventually goes back to normal size. I also felt like the bone was poking my throat back there.

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I never had TMJD symptoms until this year after the dental work. My extraction was also due to a failed root canal. There was an abcess at the root of a missed canal that had been draining into my sinuses and wasn’t caught on x-rays at dentist. I didn’t even feel pain until it had been there for awhile and had caused bone loss. I had it extracted by a dentist but never felt the relief that I thought I would get after getting the tooth extracted. I also had some pretty significant bruising after the initial extraction. After multiple trips back to that dentist, I was told everything was fine and was given more antibiotics. I was still in so much pain so two weeks after the initial extraction I went to an oral surgeon for a second opinion and was advised he hadn’t cleared out the infection properly or placed the bone graft correctly. I had to get the site scraped out again and a new bone graft placed. He told me it would either be cadaver or bovine or a combo. I don’t know what the final result was. A few days after the oral surgery I developed a string of ulcers in my cheek, probably about 1 inch long and I was having pain on swallowing (now I know it was from the elongated styloid). Follow up at the oral surgeon just said it wasn’t related to the oral surgery and sent me on my way. So that’s where I had to figure out next step and went to ENT who gave me the incorrect diagnosis. It was about a month after my oral surgery where I started to develop the Jaw & tooth pain, pain/difficulty turning neck on that side. Saw a new dentist who felt that it was due to clenching, or my bite changing after extraction from teeth shifting, he also mentioned shingles or fibromyalgia. I looked back on that string of ulcers and had considered at one point maybe I had shingles since it was all on the left side and perhaps I was dealing with some post herpetic neuralgia. Follow up at oral surgeon and I was advised I may need to see a neurologist, it could be phantom tooth pain. The pain got so bad I went to the neurologist who was able to prescribe gabapentin which did give me some relief. My jaw pain would flare up after seeing the dentist where he had my mouth open and it flared up pretty bad after the oral surgery to place the implant post but calmed down in about 3 weeks. I was expecting to have pretty bad jaw pain after this tonsillectomy based on those experiences but it has been minimal and I think its just from the swelling so I’m hopeful that the small part that he was able to cut might have provided some relief. This year has been challenging to say the least and I’m only happy that I might have some answers now.

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Thank you! Yes, I should get relief from not having the feeling of a bone sticking out in my throat at least and I am already noticing that I’m not having as much pain signals in my jaw and teeth so hopefully the part he removed will help with the symptoms I was having.

That’s awesome you found an ENT that was knowledgeable. Does the enlarged tonsil affect your breathing or swallowing? Hopefuly it shrinks in size if the styloid was removed from that area.

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@Nomoretonsils37 it doesn’t affect my breathing or swallowing as far as I know, but it’s been swollen for years now so it’s hard for me to say. I’ve been on tons of antibiotics ans steroids and it never changed. The anesthesiologist for my surgery was a bit freaked out by my huge tonsils and trying to get a breathing tube around them lol. I never had strep or infections much as a kid so my doctor never recommended getting them out, though I kinda wish he had! I’m hoping it’ll shrink some when I’ve healed more.

Hope your recovery continues to go smoothly!!!

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I hope that you heal well from surgery, & it’s good to hear that you’re noticing less pain in your jaw & teeth! There’s info on here about what to expect after surgery- you can use the search function to look at older discussions- there can be ups & downs with recovery…
Did you just have pain one side, or both? It looks like the styloids are/ were long both sides, so as Snapple says it might be worth getting a CT if you are getting symptoms on both as the other side may need to be removed too.
Take care of yourself & hope you have someone to look after you!

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Thanks! I will take a look around. I am prepared for the possibility of the pain to get worse in my recovery. Currently I’m feeling better than I expected but it’s only day 2. I do have my spouse here who works from home to help me if I need anything as well as to be the main caregiver for our children thankfully.

It was only in the past couple of weeks that I started having some of the same pain on the right side. I thought it was TMJ pain but now I’m curious whether the pain could be from the elongated styloid on that side. I am definitely looking into getting a consultation with someone experienced.

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My second ENT (I had four to finally get a proper diagnosis) almost performed a tonsillectomies on me as well, for the same reason. He thought I had a tonsil stone. I was three weeks away from getting the tonsillectomy and decided to get a third opinion and that’s when they found the Eagle Syndrome.

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That’s great that you trusted your instincts and got a third opinion! I hope you are doing better now, did you have surgery?

I had considered getting a second opinion but decided to trust the two doctors that had identified it as a tonsil stone. If I had known about this syndrome I definitely would have gotten another opinion.

I’m so sorry you had to go through that. I just had surgery six days ago with Dr Cognetti. Doing pretty well, just a bit numb and sore still. Having a bit of first bite sensation but hoping that gets better with time. I still don’t really have a report on symptom improvement since surgery was less than a week ago but I’ll definitely keep you posted on the weeks and months to come.

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You’re really fortunate about having enlarged tonsils & not being pushed to have them removed. One of my sisters had huge tonsils & the other large adenoids. Both had tonsillectomies - one because of chronic tonsillitis & the other because the adenoids caused her to snore loudly as a child which was taken to mean they were obstructing her breathing. I had my tonsils out because they blocked my Eustachian tubes so they couldn’t drain whenever I had a cold, & I’d temporarily go deaf. This of course concerned my mother who got tired of trying to get my attention then realized I couldn’t hear her :joy:. I think each of us was in the 4-6 yr old age range when the tonsils & adenoids were removed. It was a much more common practice in the 1950s & 60s. Now doctors are much more conservative about removing them.

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Great news that you’re feeling better. The first couple of weeks are the worst after a tonsillectomy so that bodes well. You can ice your neck (15 min on & 45 min off), suck on popsicles, drink ice water, etc, to help with throat swelling & pain. After ES surgery it’s also recommended to sleep with your head elevated to 30° as that also helps reduce swelling.

I hope your healing goes quickly & smoothly & your other styloid doesn’t keep bothering you. Also hope you can find someone w/ ES experience who’s more local to you. :hugs:

Thank you! I sent an email to my current ENT assistant asking for the CT scan of neck. Hopefully they can get that scheduled soon and I can have it done this year while I’m 100% covered and I’ll already have it to take to specialist.

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OMG! Seems we had alot of similiar experiences triggered by tooth extraction. Yours sounds even worse than mine and I thought mine was horrific. Luckily I saw my TMJ specialist about 1 week after extraction and he as well as my PCP agree it was not shingles. Apparently virus’s like to hang out in the nerves and can be dormant for decades. Without having done a culture, Ill never know what kind of virus reared its ugly head. I’m afraid to have the implant or to have anyone touch my teeth now. I did fire the dentist and oral surgeon as well as the root canal specialist…none who could or would explain what had occurred. The whole thing triggered bad vertigo back then and it took weeks to calm down.

I now have new vertigo, tinnitits and sudden hearing loss on this same side that just reared its ugly head. Im back to the drawing board again to figure this one out. One ENT (not my first choice) just had a nurse call and tell me doc says the MRI was normal and tried to push it off on neurologist who I happen to already seen after her. Luckily I have a 2nd ENT on board who was my preference anyways. I told the nurse I read the MRI report and it was NOT normal. The new ENT wants to read the scans himself. It continues to amaze me how incompetent doctors and dentists can harm us, steer us in the wrong directions and blow us off.

I am glad you didn’t have the jaw pain with the most recent surgery. I would be prepared for possible flair after Eagles surgery.

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