Diagnosed after 2 years seeing Dr. Annino on Feb 27th, Possible IJV

[Matheou]

I figured I would share my bilateral Eagle Syndrome journey. I’m still ambivalent about surgery because I’m nervous and my symptoms are episodic/cyclical for 3-6 weeks of feeling completely fine and 3-6 weeks of feeling awful. I would love some input from people who have cyclical/milder symptoms and had surgery, was it worth it? Did your episodes resolve?

Thanks for any helpful comments! Now for my story.

My Story:

History:

• September - December 2020

  • Saw PCP and Neurologist for :
    • Paresthesias and Pain in Neck and Face
    • Temperature changes in arms and hands and legs
    • Difficulty Speaking and Articulating words
    • Brain Fog
    • Forgetfulness
    • Feeling of drunkenness
  • Got a Brain, Cervical, Thoracic, and Lumbar MRI, tons of blood tests looking for causes of neurological diseases. Given a clean bill of health
  • Note: I went back to look at my spine MRI and they focused my spine so you couldn’t see the styloid.
  • Neurologist said it was most likely temporary spinal toxicity, but I should go back every 6 months for 2 years to get a neurological exam.

• March 23, 2021

  • Saw 1st ENT
    • Upper Right Neck Pain and Tightness
    • Everything feels like it’s being knocked left when I swallow
    • Tinnitus and tension sound in my Right ear when I touch the right side of my neck or face.
    • Sporadic Tinnitus flashes in the left ear (Loud high-pitched tinnitus that slowly diminished in volume and vanished within 30 seconds)
    • Pulsatile Tinnitus in both ears when I lay down (dismissed because I have hypertension)
  • ENT did a flexible laryngoscopy and said it was most likely musculoskeletal and sent me home with Advil and a referral for Neck PT

• Over the next year saw my PCP, Dentist, Derm, Ophthalmologist, and ENT a couple of times for episodic occurrences (3-6 weeks):

  • All the above-mentioned symptoms.
  • Headaches on the right temple and above the right eye.
  • Pain and tightness in the right upper and lower neck going into the arm, chest, and shoulder.
  • Right face and jaw pain (No TMJ according to the dentist).
  • Shocks to jaw-like and under by submandibular gland
  • Sensation of having something stuck in the back of my throat near the right side of my tongue
  • Sensation of having something stuck in the right side of my throat (thyroid cartilage level) aka Globus Laryngeus
  • Discomfort and Pain on the right side of the throat at tonsil level while swallowing (feel like everything goes left.).
  • Right ear itching and sharp pain
  • Left ear itching and sharp pain
  • Abdominal Pain shocks
  • Heart Palpitations (had Ziopatch in July 2022, Echocardiogram Dec 2022)
  • Right Facial touching causes paresthesias intermittently
  • Paresthesias in running up scalp from occipital and mastoid areas
  • Pain in the right side of my throat when I yawn.
  • Pain when swallowing while looking to the sides.
  • Sensation of my scalp being touched by something that’s not there.
  • Worst symptoms:
    • Brain Fog
    • Fluctuating Right eye blurry vision (got glasses)
    • Dry eyes
    • Hypersalivation
    • Sensation of being woozy or drunk all the time
    • Losing the ability to pay attention for extended periods of time
    • Difficulty remembering things and paying attention during conversations
    • Flashes of severe dizziness (1-3 seconds episodes very rare but extremely disorienting.)
    • Bilateral face upper lip and cheek numbness and tingling (on multiple occasions I’ve told my wife to be ready in case I have a stroke)
  • I had tons of CT scans and blood tests but no one ever listened to me that the symptoms were in my neck so I ended up with a Fibromyalgia diagnosis.
  • I also saw a second ENT during this time and after a flexible laryngoscopy said everything was fine and sent me home.

• More severe episode began on October 9th 2022 made an appointment the 2nd ENT:

  • All of the above-mentioned symptoms
  • Stabbing pain in my throat on the right side when swallowing and yawning
    • The pain was so bothersome that I decided to feel around in my throat where the pain was located and found a small tusk-like protrusion hugging the entire length of my tonsil
    • When I touched it all of the symptoms I mentioned happened all at once and took a day and a half for the symptoms to lessen. Living off cough drops and tizanidine right now.
  • Upper and lower right neck pain radiating into my right trap, shoulder, and pec
  • Tingling and pain shock sensation shooting across the right side of my face and along my jaw
  • My larynx also started to click during this episode (my thyroid cartilage started to get caught on my hyoid bone every time I swallowed.)
    • Worsened when I lower my chin towards my chest or turn my head left
    • My thyroid cartilage snaps back into place but sometimes gets stuck on the hyoid and I need to push my thyroid cartilage to the left to “dislodge” it.
    • This alleviates most of the symptoms including the ones from my styloid
  • Touching my face causes the sensation of the touch to stay there for prolonged periods of time.
  • Right side headaches every night
  • Right Ear itching and pain and popping when I swallow
  • Lightheadedness and dizziness
  • Difficulty speaking, recalling, and brain fog
  • Brain fog and inability to pay attention
  • Worsening vision in my right eye and seeing lights (I got glasses in July they were working great now my right eye is seeing somewhat blurry even with the glasses.)
  • Right face fullness and numbness when I bend forward. When I come up face tingles
  • Face numbness on left side with tinnitus intermittent

• Doctor said that I keep coming back for the same issues to the ENT office so she ordered a Neck CT with Contrast.

• Follow Up Appointment Dec 27, 2022

  • ENT said that the radiology report didn’t show anything and that I have a “small tonsil stone” in both of my tonsils but didn’t let me see the CT scan images.
  • Note: Later when I finally got access to my CT scan it turns out that it was actually the tip of my styloid in both tonsils

• Second opinion with the Head of the ENT department at ENT 2’s office (January 11th 2023):

  • This doctor told me the same thing ENT 2 said that it was a tonsil stone and that the CT scan was negative for anything concerning.
  • I pushed and it took him 6 attempts of sticking his finger in my mouth for him to finally feel the tip of my styloid by my right tonsil.
  • After 2 years and 3 ENTs I was finally diagnosed with ES and offered surgery.

While this doctor that diagnosed me has the pedigree I would be comfortable with getting surgery with. I first decided to get another opinion and made an appointment with Dr. Annino at BWH which is on February 27, 2023.

Images
MPR measurement:

3D Reconstruction Bone:

Shortened distance between Thyroid and Hyoid:

3D Reconstruction Vascular:
Right IJV:

Left IJV:

Posterior Colateral view:

Right IJV (Mild/Moderate Compressions waiting for Dr. Annin to confirm):

[Jules]

It is a difficult decision whether to have surgery or not- obviously there are risks with any surgery, but only you know how significantly the symptoms impact your life, they sound pretty difficult to live with TBH!
I had nerve pain, constant aching which was partly helped with Amitriptyline, neck pain etc, but decided I could live with this rather than risk surgery. (Mine were constant, not cyclical) But later on I started getting Intracranial Hypertension symptoms, turned out from bilateral jugular compression, and the vascular symptoms (similar to the ones you sound like you’re getting) were worsening & making me feel really ill, which made up my mind to have the surgery. After the worst side was done the vascular symptoms eased off significantly, and I was really glad I’d had surgery.
There are lots of stories on here about what to expect after surgery, and about success stories (or otherwise), hopefully others will chip in with their experiences too.

[Matheou]

Thanks, Jules. I appreciate the response.

I think my issue is I feel great, like 100% normal, between episodes, and the longer they last, the more I forget just how uncomfortable the episodes are until the next one hits. That, combined with nervousness about getting major surgery, makes me have doubts.

I’m worried my vascular symptoms may worsen and/or the cyclical nature will evolve into permanent symptoms. So I’m seriously considering surgery, I’ll see what Dr. Annino thinks before I decide, but I’m about 70/30 convinced surgery/no surgery right now.

[AS2005]

It’s funny, I’ve been going through the same thing. My symptoms are not cyclical, but Lyrica (100 mg per day) is really helping me with pain management. I do have vascular compression, likely of my carotid, so I have some dizziness and risk of falling.

I feel trapped between two imperfect choices - either to live like this on medication for a long time or to have a risky and scary-sounding surgery. I think I will come around to surgery eventually, but need some time to make my peace with the decision.

In my case, the diagnosis was very sudden and unexpected so it was very much a surprise only two months ago.

[Isaiah_40_31]

@Matheou -

In addition to elongated styloids, you also have calcification on your stylohyoid ligaments coming up from your hyoid bone. That should be remove in addition to your styloids for the best surgical results.

I’m sorry for your symptoms. They sound awful & definitely the worst, most likely have a vascular compression basis.

My ES symptoms weren’t as cyclical as yours, but they did come & go. As time progressed, they became more solidly entrenched as you’re concerned yours will do. Surgery gave me my life back. I’m thankful I made the choice to pursue it.

[KimberlyNYC]

My symptoms were also somewhat cyclical for many, many years. Until they became constant.

I wonder if I would be in better shape going into surgery (I’m extremely depleted now) if I’d had it the opportunity to have it before my symptom/clinical progression, including bilateral IJV compression and a host of autonomic nervous system problems (including heart rate issues) that are likely due to vagus nerve compression/irritation.

It’s not a thought experiment I engage in because I didn’t have the diagnosis and couldn’t have known surgery was an option, but I do think it’s a point worth considering/discussing with prospective surgeons.

[Matheou]

@Isaiah_40_31 Thanks for pointing that out. I hadn’t noticed that what I thought were the “lesser cornu” were a lot bigger than they should be. I’ll be sure to mention that to Dr. Annino on Monday.

Yeah, I started an episode yesterday after about a month of no symptoms, and needless to say, with how I’m feeling right now I’m convinced I need surgery at this point.

[Matheou]

Thanks for your insight. I’m sorry to hear your symptoms worsened and became permanent after many years, that’s one of my biggest fears right now.

I won’t allow this to go from cyclical to permanent if I can help it, so fingers crossed I can iron out the details for getting surgery on Monday.

[KimberlyNYC]

I hope your consult goes well, and that you’re able to chart a course towards effective symptom relief.

[Pcrowe]

Any news? How did you like Dr. Annino? We are scheduled to see him next week with our 18 year old son. He has bilateral calcified styloid ligaments and they measuee 5.7 and 5.6 cm. We are traveling a long way to see him. I hope your experience is successful.

[Matheou]

Hey, @Pcrowe, thanks for asking! It went well! Dr. Annino is nice and very professional.

It was evident from the get-go he has a lot of experience treating ES. We went over my history and symptoms, and he went through the CT Scan with me and quickly recognized everything I mentioned in my first post and the ligament calcification mentioned by @Isaiah_40_31 in the images prior to me pointing them out to him, despite the fact that two other ENTs and a Radiologist claiming my CT scan was 100% normal.

He even caught a thing I didn’t see. My greater cornu on my right Hyoid bone is in between my carotids which is not normal, and he will be reducing the size of it as well since it’s a risk for vascular symptoms. My right side is my symptomatic side, so we’re going that side first, and he said he could do both through the same incision.

He explained how he does the surgery and monitors everything during surgery and would remove the styloid above the IJV compression as close as possible to the skull base but explained that things get tight at the top and decides how far up he goes during surgery based on what his judgment, the ligament, and the piece of Hyoid bone.

When my previous surgeon suggested surgery, I had a lot of doubts and asked for time to think about it. With Dr. Annino, I felt comfortable enough to schedule my surgery by the end of the consultation.

My surgery is scheduled for March 17th. I’m still nervous, but the consultation helped to ease my nerves a lot, thanks to Dr. Annino for sure. My symptoms have been bad this week, so I’m excited to be free of these awful symptoms.

I hope everything goes well with your son’s consultation and he can get some relief from any symptoms soon!

[Matheou]

Also, now that I’m scheduled for surgery, I was wondering if there’s a compilation somewhere on the forum of some good steps to take to prepare my apartment for post-op. I found some thread mentioning ice packs and wedge pillows and was wondering if there’s a more complete list.

[Pcrowe]

My new found friend who had surgery with Annino suggested renting a lift chair.

[Isaiah_40_31]

@Matheou & @Pcrowe -

The typical things you’ll need post op are a wedge pillow (I bought mine at Bed, Bath & Beyond $25) & put extra bed pillows on it to increase the slope to close to 30º suggested by my ES surgeon, but there are better/more expensive ones on Amazon - for example: https://www.amazon.com/dp/B07ZP6SJDQ/ref=redir_mobile_desktop?_encoding=UTF8&ref=ppx_pop_mob_b_asin_title&th=1

or this one from MedCline: GERD Pillow: Acid Reflux Relief for Side Sleepers | MedCline

Costco in my area is also selling a memory foam wedge pillow at the moment for about $40.

I highly recommend buying 2-3 gel ice packs so a couple can be freezing while one is being used. They come in different sizes so a smaller size is better than large. You want it big enough to wrap around the curve of your neck so it stays in place. I bought mine at CVS & Walgreens.

I preferred the top one as it was more streamline. Icing for 15-20 min on with a thin washcloth or dishtowel between the ice & skin & waiting at least 45 min before icing again is ideal. In rare cases, ice didn’t work as well for a few members so they used heat. There is some trial & error in finding what’s most helpful w/ pain relief.

You won’t need to rent a lift chair because you’ll be mobile & able to get up & down from a regular chair, recliner, couch, bed, etc., once you’re home from surgery. The first day you’ll be loopy/sleepy from anesthesia, & possibly from pain meds for a few days, but it’s not so bad you can’t walk around the house & even do some light food prep.

Other things to have ready are soft foods for the first few days to a week. We have often noticed that the jaw is stiff/jaw joint on operated side is sore post op & swallowing can be a bit challenging due to a sore throat. Things like yogurt, smoothies (make sure to add some protein powder if you make these at home to add some staying power), soups (if they contain meat/veggies run them through a blender before consuming), mashed potatoes, mac & cheese, fruit sauces, hot cereal, etc. Some people have commented that sucking on popsicles was very helpful w/ the throat pain.

Rx pain meds are often very constipating so have a stool softener & laxative handy at home & start taking them daily as long as you’re taking Rx pain meds. I preferred to use CALM - magnesium citrate powder - because I could titrate it to the strength that worked best for me & not be subject to a pre-measured amount of medication in a pill/capsule.

I highly recommend staying very hydrated (60-70 oz of fluid/day - preferably low sugar) as this will help your body heal faster, & if you end up w/ First Bite Syndrome it helps reduce the pain a bit.

I expect others will add things that helped them.

[Hadassa]

Matheou,

So sorry that you are going through this! I suffered with ES for 17 years and I was literally dying and nobody could diagnose me…the initial onset of ES happened to me on December 24, 1987. On December 8, 1987 I had just had a baby so, when I felt like a fishbone was sticking me on my left side, I was told that I was going through possible Post Partum Depression!

Yeah, right! I was so miserable and I was losing the battle with the pain. I went to so many doctors and none of them had answers for me and they just kicked me down the road. I moved to Oklahoma and it was then that I went to University of Oklahoma Hospital and it was there where I found Dr, Krempl. He was able to diagnose me with ES and I decided to do the surgery.

Yes…it was a very hard surgery and while I was recovering and in pain, I thought I had made a mistake because the pain was so unbearable but, through prayer and taking it one day at a time, I started to feel better each and every day. I am a Diabetic and I heal very slowly, After about 4 months of recovering, the poking in my throat stopped and I got stronger and stronger.

I made the right decision…My life became better and I was able to enjoy eating. Before the surgery, I was down to eating baby food. I NEVER ever want to live with the fear that I had to endure for 17 years,

Life is better and my advice to you is, let go of the fear and have the surgery so that you can have a positive outlook in life. Before I had the surgery, all I wanted to do was just go to sleep and never wake up. I am healed and life is so much better.

[Hadassa]

Pursue your healing…ES will only get worse,

[Hadassa]

You might have to sleep upright in a recliner or on a couch. That’s what I did for about 4 months. It didn’t kill me! You do what you have to do for you. I was totally by myself after surgery because my sons were in school and my husband had to work.

It was hard but, I got through it. Stay close to God…

[Jules]

So pleased that you’re confident and are ready to go forward with surgery. And that Dr Annino pick up everything on your CT!
There’s a surgery shopping list a member compiled, I think @Isaiah_40_31 has covered everything anyway, but just in case there’s anything different, here’s a link:
Surgery shopping list - General - Living with Eagle
Will make a note of your surgery date & will be praying for you!

[Matheou]

@Pcrowe Thanks for the suggestions. I had no idea those even existed until just now; I’ll look around nearby and see if they have them.

@Isaiah_40_31 I appreciate you taking the time to compile a list of things to have ready. It’s extremely helpful.

@Hadassa Thank you for sharing your story and words of encouragement. It helps a lot, I feel like I’ve made the right choice, and I am going to pray everything goes well!

@Jules Thanks for the link to the shopping list and your prayers!

[Matheou]

Update! I had surgery yesterday it went well. Dr. Annino resected my right styloid (4.5cm up to the top of C2) and stylohyoid ligament as well as the greater cornu of the hyoid bone (5mm), which was sitting on the carotid bifurcation, compressing both. The pain was pretty bad when I woke up, but menthol lozenges, 15mg of THC tincture, and Tylenol have helped a ton! (They gave me opiates but I’m trying to avoid using them if I can.)

Immediately after surgery, most of my symptoms were gone. I honestly forgot how it felt to swallow without pain, clicking, and everything being knocked left in my throat, and even the blurry vision in my right eye is already improving (I read the forum on chrome at 100%, clearly covering my left eye which was impossible prior to surgery.)

They had to move my hypoglossal nerve to get to the hyoid, so the right side of my tongue is partially paralyzed and numb temporarily. They said it should recover with time that the nerve was preserved, so I shouldn’t have any long-term issues. It’s a little hard to control swallowing due to it but I have been able to solid food with no issues.

I appreciate everyone’s support and advice leading up to the surgery, and all the post-op recommendations have been a life saver. On to recovery now; I’ll update after I have my follow-up with Dr. Annino on the 27th.