From "It's Anxiety" to Eagle Syndrome: My 8-Month (?) Medical Maze

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Hi everyone,
I’ve been living with anxiety and depression since 2015, so I know how hard it is to fight invisible battles. That’s why I’m so grateful to share my story here—it’s hard to put into words how strong people with Eagle Syndrome (ES) are.

A bit of my background: My palatine tonsils were removed way back in 2006 (tonsillectomy), and though I managed my anxiety for years, nothing prepared me for what started in summer 2024…

My sudden health decline started in summer 2024. My throat was sore and scratchy, but tests showed nothing. Then came the low-grade fever—37-37.5°C every day, exhausting me, yet my bloodwork showed no inflammation, just mild leukopenia.

By August 2024, I was constantly seeing doctors: ENT, dermatologist, gastroenterologist, infectious disease specialist, oncologist/hematologist, endocrinologist, gynecologist… My symptoms were so vague that sometimes I wondered if it was all in my head.

Symptoms I had vs. Diagnoses I got:

  • Stomach pain, nausea, irregular bowel movements → Gastroenterologist: IBS, prescribed antidepressants.
  • Pain in left armpit/arm, numbness in pinky & ring finger → Neurologist: compression neuropathy, but no explanation for the armpit pain.
  • Hair loss → Dermatologist: androgenic alopecia, but treatment didn’t help.
  • Infectious disease specialist/oncologist-hematologist → No cause found for leukopenia or fever.
  • Constant fatigue, napping 2x/day → Endocrinologist sent me to a psychiatrist.
  • My psychiatrist (who’d worked with me for 4 years) suggested looking for a physical cause—he doubted my sudden decline was psychological.
  • Brain fog (since 2019, but then 6/7 days a week) → Every doctor said it was anxiety.

By February 2025, I was back at square one—my fatigue worsened, and new symptoms appeared:

  • Blurry vision
  • Left-sided trigeminal nerve pain
  • Dizziness
  • Trouble swallowing (dysphagia) multiple times a day

At my ENT appointment, I mentioned my throat was still scratchy and swallowing was sometimes hard. The doctor glanced at my file and said, “You should keep seeing your psychiatrist.” But as a “favor,” she referred me to a maxillofacial surgery department.

To my surprise, they scheduled me quickly. By mid-February 2025, I met the surgeon. I brought a thick folder of medical records, but she didn’t even look—just listened and said, “Sounds like Eagle Syndrome.” The next day, a CT scan confirmed it: 44.2mm left styloid, 42mm right, calcified ligaments on both sides (no vascular issues noted).

I had no idea what ES was—even though I’d graduated from dental school (I now work in clinical research). My surgery was set for April 18, 2025, so I started researching. The Russian web had barely any info (mostly surgical techniques), so I turned to international papers—but they mostly covered surgery, not symptoms. Then I searched Reddit for “Eagle Syndrome” and found this forum.

For days, I read stories just like mine. I cried and kept reading. For the first time since September 2024, I didn’t feel alone.

Before surgery, I devoured every forum post. Sadly, my surgeon only handled the operation—no advice on symptoms or recovery. They removed my left styloid and part of the ligament. I’d assumed (from the forum) that everyone got bilateral surgery at once.

Post-op recovery was up and down, but now—3 months later—I can say:

  • Brain fog is gone.
  • No more daytime naps.
  • IBS resolved.
  • Left hand numbness disappeared in the hospital (!).

Only low-grade fever and slight left trigeminal numbness remain.

Now, I’m arranging surgery for the right side.

Since my operation, I filed for divorce—I realized I was alone in my illness (except for this forum :yellow_heart:).

I searched the forum for “low-grade fever” but didn’t find similar cases. If anyone else had fever issues, please share.

Wishing you all the right doctor.

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Hi where did you have your surgery?

Also which side did you pick up first?

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Hi, At Saint-Petersburg, Russia First Medical University
Started with left side

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@SyncTer - Welcome to our forum! Thank you for sharing your story. It’s very painful to read so many stories about misdiagnosis & dismissal on this forum especially when symptoms are so severe. We’ve had other members who were also sent to psychiatrists instead of to someone who knew about ES & could help them. I’m glad you were persistent & finally met a doctor who was able to diagnose you. I’m so glad for the resolution you’ve had for most of your symptoms since your surgery. I’d love for you to share the name of your surgeon so we can add his/her name to our Doctors List as we have no surgeons on our list for Russia.

Bilateral ES surgery is rare in the US & most other countries because of the concern about excessive post op swelling in the throat when it’s done. We have 2-3 doctors in this country who routinely do bilateral surgeries, but the rest require two surgeries with at least 3 months in between for cases of bilateral ES.

The best I can guess about your low-grade fever is that the vagus nerve helps regulate body temperature, & since you demonstrated other symptoms of vagus irritation (IBS/gastrointestinal problems), it’s possible that your vagus nerve is either still healing or that your remaining styloid is also bothering your vagus nerve, & perhaps the fever will disappear once the right styloid is shortened.

I hope your symptoms continue to disappear as more time passes. It can take up to a year for irritated/damaged nerves to fully heal but often by 6 months after surgery most symptoms are pretty well gone.

Please let us know when your next surgery is scheduled.

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The surgeon’s name is Mikhail Kovalev, I checked, he no longer works at the medical university (Russia, St. Petersburg), but I also consult with Igor Zaderenko from Moscow (Blokhina), he specializes in oncological operations on the head and neck. He was very supportive and understanding, I knew from him that ES is quite often diagnosed posthumously. This consultation gave me a little more time before my first operation.

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Thank you for sharing your story! I’m glad that you’ve found the forum helpful, that you’ve had one side done & have seen improvements already! There are a couple of mentions of fever, temperature changes or intolerance to temperature changes, not sure if they’ll be of any help:
Small tricks to help Eagles with IJV compression - General - Living with Eagle
Best, Safest Treatment for Eagle’s Syndrome - General - Living with Eagle
Vascular Eagles? - Symptoms and Treatments - Living with Eagle
Successful Surgery for severe Vagus Nerve Compression - General / Eagle Syndrome Stories - Living with Eagle#
I hope that you’re able to have your second surgery soon and can get rid of all your symptoms… :hugs:

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I’ve added both doctors names to our Doctors List, @SyncTer. I’m so glad you have a back up doctor to help you. Interesting that he told you ES is often diagnosed posthumously. I wonder how many of those dead people died from some complication of ES? :wink:

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Much like my story exactly. I even gone through the divorce also because of lack of understanding took its toll.

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Cause of suffering :smiling_face_with_tear:

I was at university today, Kovalev still working, also Kalakutskiy Igor performs ES surgeries

So I was sent for right ES surgery, expected in mid autumn

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Welcome :blush: I am so glad that you found a physician that realized your symptoms might be Eagle Syndrome and that you were able to pursue surgery & get relief of most symptoms! I pray the healing process continues to improve your health & life. It hurts my heart to know ES patients must go through so much physical and emotional pain trying to get a diagnosis and get validation that their symptoms are real and not manifested from mental illness. I too went through a similar experience -(rapid escalation of symptoms, medical community not knowing how to diagnose me, blaming anxiety/depression) This forum provided hope & information and has helped many of us self advocate within the medical community. I am 7 weeks post op right styloidectomy & am getting my life back. There are good days & bad days. I learn so much here. Yes, ES people are a strong group of survivors. It’s great that we can band together and support one another. All the best to you and continued healing & health.

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@SyncTer -Thank you for the update on doctors who do ES surgeries in Russia. I’ll add Dr. Kalakutskiy to our Doctors List, too.

SyncTer & @July123 - I’m very sorry your husbands weren’t supportive when you needed them the most. How hard to have to face the end of your marriages while also dealing w/ ES!

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Have you had surgery yet @July123?

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@SyncTer glad they’ve agreed to do the second side for you, & not too long to wait! Let us know when you have a definite date so we can pray for a good outcome :folded_hands:

@Suzygrace Great that you feel you’re getting your life back, hopefully there’ll be less & less bad days as time passes, thank you for sharing your recovery story :hugs:

@July123 So sorry that your husband hasn’t been supportive & it’s ended in divorce, thinking of you & sending you a hug :hugs:

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@Suzygrace - Thank you for sharing your post op success so far. Healing is an up & down process as you noted. You sound optimistic which helps a lot during recovery. I’m so glad you’re doing well & feeling better. I hope, pray & expect that will continue over the next many months.

:hugs:

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Thank you. I try and encourage others just as so many have encouraged me. My healing started out strong. I still have the ES symptoms gone on the right side, but have been fatigued and am having pain with biting foods and the first few swallows of anything sour or fizzy. It goes away after a bit, but it’s making eating not enjoyable. I messaged my surgeon at Cleveland Clinic today. My incision is still numb around it. The numbness recedes a bit, then goes back to just under my chin but hasn’t gone away yet. Tomorrow is 7 weeks post op, so I guess it still is early. No brain fog or rt ear pain or dizziness or terrible dragging fatigue, no migraines or digestive issues or nerve sensations or drilling jaw pain or rt nasal nerve sensations. I have begun to have nerve issues in my left nasal septum area, which has now spread down my nose to the tip of my nose on the left side. This happened early on with my right side. So I’m monitoring it and did let my surgeon know. My left stylo hyoid ligament isn’t as severe as the right side was, but she said to let her know if I have any symptoms before I see her for a recheck in January. Did you have both ligaments removed? If so, were you asymptomatic on one side and then did you develop symptoms? I don’t want to have another surgery, yet, I certainly do not want to deteriorate as I did with my right ligament. Some of my symptoms I had for years not realizing it was ES (ear pain and fullness ringing in the ears, insomnia and fizzing/whooshing, hearing coming & going, migraines). It was always put down to hormones or anxiety etc. I am living life and grateful, yet resting as needed, trying to be realistic. My scar is still tender and lumpy and though I don’t care about having a scar and am not vain at all, I hope the lumps (like hard peas or marbles) under it go away eventually. I’m using Mederma and Vitamin E on it nightly per my surgeon and use SPF 70 on it daily. Any advice? Thank you so much. :folded_hands:t3::growing_heart::eagle:

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My surgery was 15 weeks ago. The scar is still red, the left side of the platysma is still numb, but not as much as after the surgery. I use SPF 50 cream and sometimes silicone scar tape. The ligaments are removed one at a time, depending on which side is being operated on.

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@Suzygrace

Good news that the right side symptoms are gone. Fatigue is very normal for a month+ after ES surgery. It’s the bodies way of moderating activity so it can heal. At about the two month mark after my first surgery I woke up one morning with my fatigue totally gone. I actually felt pretty normal for the first time in ages.

The pain with eating is First Bite Syndrome. It’s caused by an irritated glossopharyngeal nerve (that nerve often gets irritated by ES & sometimes more so from the surgery) overstimulating the parotid gland (our largest salivary gland on each side). Usually FBS symptoms decrease then subside in 2-6 months post op, but they can hang around longer. Mine have never totally gone away but thankfully it’s only on my right side & has become far less intense than when it first started & only happens once in a while now.

Yes, it’s still early. I had numbness along my jawline for nearly a year. The nerve recovery was interesting as sometimes my jawline felt warm & tingly & sometimes like it had a cool breeze blowing on it. That went on for months as it healed. You may experience odd sensations in that area for a while longer.

That would be your trigeminal nerve causing those symptoms. It’s a bit more rare to have nose pain from that nerve, but I had it too. Mine started after my second styloidectomy but went completely away after a couple of months. In your case since you still have your left styloid & that’s left-sided, there’s a good chance your left styloid is irritating the TN. The symptoms my left styloid were causing become much more obvious & severe 2-3 months after my right styloid was removed. This seems to be somewhat normal for people w/ bilateral ES. It can be hard to tell which styloid is causing which symptoms until one is removed.

As noted, I did have both removed (about 9 months apart), however, both of my were symptomatic before I had surgery but the symptoms from my remaining were much more pronounced after my first surgery.

The lumps should gradually disappear as healing progresses. If your surgeon used internal, dissolving sutures, that may be what is causing the lumpiness. As they dissolve the lumps will go down. When you apply the vitamin E oil at night, you can spend a few minutes gently massaging it into your incision. That will stimulate circulation to the area which will also help with recovery.

Other than gently massaging your incision, the only advice I can think of is you can use a very soft cloth or something as gentle as a feather to gently rub the skin around your incision & any other numb areas to help stimulate nerve healing. Nerves only need a very light touch for stimulation.

It sounds like you’re really healing well so far from your first styloidectomy. I hope the pain in your nose goes away so you can enjoy not being miserable as you heal from your surgery. :heart_with_ribbon:

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@Suzygrace I think @Isaiah_40_31 has answered your questions, I’ll just add in that hopefully the first bite will ease off, drinking plenty of water can help, & obviously avoiding whatever foods you might notice make it worse. I still get it occasionally, it usually seems to be sweet stuff which gives me a twinge but it’s different for everyone. My ears & a bit of my jawline are still numb, but it’s better than pain…I get the nerve pain in my nostril from the trigeminal nerve occasionally too, it’s weird & annoying but not awfully painful for me, although it can make my eyes sting too…my scar was quite lumpy too, I used Bio oil to massage it & it’s much flatter now. Sadly it does seem to be common for the opposite side to flare up after one side has been done, mine did as well.

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Thank you Jules & Isaiah 40:31. This is so helpful & comforting.

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