My story - hopefully surgery soon

General
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I’m so glad I found this website! I was in a car accident almost 16 years ago. I was in the backseat of an SUV that hit a tree. Being young and dumb, I only had the lap part of my seatbelt on. My head slammed forward and to the right and hit the headrest. It snapped back quickly. I only had a cut on my eyebrow and didn’t have any symptoms. Fast-forward a year or so and I started to have neck symptoms, but a really good chiropractor helped those. Over the next 10 years I had on and off next symptoms, but they were very minor. 3 1/2 years ago, I got Covid which developed into long covid dysautonomia (POTS). At around the same time, I began to have really bad neck issues. Part of that may have been due to the stress. We also moved cross country at that exact same time. Over the last year or so I have gotten a lot of treatment from the Cleveland Clinic and other surrounding doctors in Northeast Ohio that have significantly improved my dysautonomia. I still have a few issues, but for the most part, it’s manageable. My heart does race abnormally at times and my blood pressure and heart rate do rise some when I stand. It also takes my heart a little longer to slow down after any type of exercise.

Over the last year and a half my neck issues have gotten worse. My neck gets extremely tight whenever I turn side to side for long periods of time and especially when I look down at all. My shoulders freeze up and I get dizzy because my ears get full. The muscles right under the ear get incredibly tight, especially on the right side. I get a pulse sound in my right ear if it gets really bad.

I saw a TMJ and sleep apnea specialist here in Cleveland that fit me for a device that has really improved my TMJ issues. During the entry process, they took a CT scan of my head. When she showed me the images, I noticed what looked like a bone on my right jaw that did not appear on my left jaw. I asked her what that was and she said that it was an elongated and calcified ligament. I asked if they would be able to remove that, but she said that because it was so close to so many important nerves and other important veins, that no one would touch that.

I went about nine more months, but continue to have issues with my neck whenever I look down. It continue to get worse. I got PRP shots in all kinds of ligaments in my neck, but that almost made it worse , I decided to google my symptoms and put in there that I had a calcified ligament and this website showed up. I decided to see a Cleveland Clinic Head And Neck Doctor who confirmed that I did have Eagle syndrome. He said they remove that all the time. He is still waiting for my images to come over from the other doctor to confirm the length of the elongated ligament. It’s only on the right side and he thinks that is because of the damage done from the car accident.

With that being elongated and calcified, it seems like it is hitting nerves that tighten my neck and shoulder muscles. It probably is also affecting the vagal nerve which may be the root cause of my dysautonomia. I’d like to have the surgery done in the next couple of months.

I’d appreciate any feedback that you all could offer regarding the surgery and recovery and anything else I should be asking before surgery.

My main symptoms are:
Dysautonomia
Stomach issues
Extremely tight neck and shoulders.
Some eye strain
Tension headache
Pain down my arms, especially the right side

Thanks so much!

As you can see from the pictures, the elongated and calcified ligament can be seen in my right cheek and also clearly from the side picture.

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P side
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Thank you for the pictures, @paul15. Your styloid sure shows up clearly & looks somewhat thick, but the interesting thing about it is the blunt tip. Usually the tips are pointed or at least rounded. Yours looks almost flat. There are tiny bits of calcification below it, & I wonder if perhaps the tip broke off & those are the remnants? They aren’t likely to cause harm if left in since it’s the styloid itself that’s most probably the culprit for your symptoms.

I also think my ES began as the result of a car accident. I was belted in properly but was stopped in traffic on the freeway when a car that was merging into another lane didn’t see traffic had stopped & slammed into me. I flew backward so hard it bent the frame that supported the seat I was sitting in. I’m very thankful that whiplash was basically the only injury I suffered.

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I’m glad that you’ve finally been diagnosed, like many on here it’s taken a while & you could’ve been diagnosed much sooner…
Hopefully your dysautonomia symptoms will improve, like you say, this could be vagus nerve involvement, & this can cause stomach issues too. Hopefully the cycle pf pain, muscles getting tense, more pain, more tension etc will ease with the ligament removed too (There have been lots of discussions about posture affecting the neck & ES symptoms, worth a look- I might just be the angle of your imaging, but your neck looks quite straight without it’s natural curve, has this been mentioned at all in your appointments? It’s called military neck which you could look up.)
The dizziness and pulsatile tinnitus you mention (hearing a whooshing/ heartbeat in your ears) can sometimes be caused by jugular compression; if you have a read of the section about vascular ES it might give you an idea if this is being caused by your styloid/ calcified ligament. here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
The arm and should pain could well be your accessory nerve being irritated, which is quite common, & hopefully will resolve after surgery.
There’s info about surgery in the Newbies Guide Section too, including what questions you could ask your doctor, here’s a link to that:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There’s also a link to a surgery shopping list one of our members suggested, plus links to some recovery stories. And if you search ‘what to expect after surgery’ or something like that it should come up with lots of discussions…
Is your surgery going to be external or intra-oral do you know? Recovery is easier with the external usually (and it’s regarded as safer & better for removing more of the styloid). You may well find nerves are irritated during surgery- they should be monitored so that they’re not under too much stress- so some members have found that they might have weakness in the facial muscles, drooping eyelid or lip, the tongue can sometimes be affected, or your arm & shoulder might be weaker. These usually resolve okay after surgery, very occasionally it can take a few months, but that’s not often. Opening your mouth wide and chewing is often difficult, so we suggest getting smoothies and soft foods ready in case. Swelling can delay healing, so it’s recommended that you sleep propped up a bit and use ice packs covered in a towel regularly. Some doctors prescribe steroids or put in a drain post surgery to help with swelling, but not all do.
You’ll likely feel tired, & it’s best to take it easy after surgery- avoid any strenuous exercise or lifting etc for at least a few weeks. Recovery is often up & down, you’ll have good days & bad days, so it’s best to be prepared for that & not to get too stressed if you have some bad days, it will get better. And nerves can take months to heal, sometimes even up to a year, so be patient & don’t expect your symptoms to go straight away…
Hope this helps!

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@Jules - Good call on @paul15’s neck. I totally forgot to look at it. Definitely no lordotic curve there, at least in the image he posted.

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Thank you! Yes they have mentioned my “non-curved” neck. It definitely is the result of the whiplash. They have told me it’s not fixable but with stretching it can help the symptoms. I didn’t quite understand what you meant by posture part. Can the removal of the styloid improve the posture? Or did I misread that?

Thanks for all the links! I’ll take a look at the information.

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The styloid removal can help some w/ posture as muscles that are being “held hostage” i.e. are chronically tense/active by nerve irritation may begin to relax on their own post op. The doctor who told you the lack of a neck curve is irreversible is WRONG (unless your cervical vertebrae have been fused)! There are many YouTube videos done by chiropractors & PTs who demonstrate exercises you can do to begin restoring the lordotic curve in your neck which in turn will help your posture. It’s a long, slow process i.e. takes a year or so to make decent progress, but if you’re diligent w/ the neck exercises, which you must do gently!!, then you will make progress.

As @Jules mentioned, if you use the magnifying glass search tool, & type military neck (or forward head posture or Upper Crossed Syndrome - all names for basically the same problem) into the search box, many posts will come up on these topics.

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@paul15 I saw Dr. Hauser for a time to improve my neck curve. He gave me something to use at home called a Denneroll which I found to be very helpful. Here is a link to it: Overview – Chiropractic BioPhysics

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Sometimes improvement with posture & addressing the curve can change the angle of the styloids enough to help a little with the symptoms…

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I also have a Denneroll via a recommendation from my local chiropractor. Even though I have some lordotic curve in my neck, I guess it’s straighter than it should be. The only problem I’ve found with the Denneroll is I get skull base pain after about 5 minutes on it so I haven’t been able to push the time up gradually as the instructions say to do. @paul15 - if you get one, be sure to start on it for very short periods of time & work your way up gradually to longer. There are instructions that come with it that propose a schedule for doing this.

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Thank you for the recommendations on the Denneroll. I will look into that. Thanks!

Has anyone had any issues come up after the styloid removal? Issues that weren’t there before but that came on because of the removal?

I have a new CT scan next Monday and will then meet with the doctor.

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Do you mean in general with surgery? The nerves should be monitored during surgery, but sometimes can get stretched a bit to move them out the way- the common ones this happens with are the facial nerve which can cause a drooping lip or eyelid, hypoglossal nerve which can cause tongue weakness, & the accessory nerve which can cause shoulder or arm weakness. This usually resolves with time & physiotherapy. WE have had some discussions on here about CCI, & whether removing the styloids can cause the neck to become any more unstable, but that seems to be mixed, some have felt a bit worse after surgery, others better…

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I’ll add one more nerve that can become irritated by surgery & that is the glossopharyngeal nerve which can cause First Bite Syndrome which is temporary for most people.

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Thanks @Isaiah_40_31 , I forgot that!

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Just an update: I had my CT scan on Monday and it showed my right styloid is 3.5mm. My left is only 1.4. My surgeon called this morning and said he’d be fine to remove the right one. He said my dizziness would likely come from the styloid. He did say he didn’t think that my neck and shoulder tension is related. He also said my vagal nerve is likely not affected. It seems to be, though, that whenever I look down or side to side that all my symptoms flare (dizziness, terrible tension in the neck and shoulder, facial pain, and headaches). It’s been especially bad this week. Any type of phyiscal labor makes it really bad. I know I have a military neck, so I wonder if both combined would lead to my symptoms. I’m hoping with the surgery and working on the curve of my neck that the symptoms will subside.

I did ask him how many eagle surgeries he’d done. He had only done a few. Thankfully, he was super gracious and said there were 2 doctors at the Cleveland Clinic who have done over 50 each. He said he’d recommend me to them and I am planning a follow up with them. I was praying this morning that the first surgeon wouldn’t take it personally that I wanted a doctor with more experience, and he was the one who brought up going with someone with more experience. So I’m very thankful to God for answering this prayer in this way.

I’m waiting to schedule with either Dr. Lamarre or Dr. Prendes.

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@paul15 - What a great answer to your prayer! God is so faithful!!

I hope that one of the two doctors you’re being referred to will take your case & surgery will truly help relieve the symptoms you have. I think the less experienced doctor doesn’t know the scope of possible ES symptoms thus the reason he doesn’t think the neck & shoulder pain are related. We know for a fact that they definitely can be caused by ES due to irritation of the accessory nerve by the styloid(s).

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I’m so pleased that you had an answer to prayer, that not only God but the doctor you saw were gracious! I hope that you’re able to see one of the other doctors soon :pray:

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Thanks! I’m scheduled to go on October 11.

How soon after the surgery were you able to tolerate travel? We are planning to travel for Thanksgiving but it’s an 11 hour drive each way. If I wait till closer to Christmas, we are flying (only about 2 hours). Could I do the surgery 1-2 weeks before and be fine to drive or fly?

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I may be stuck with Cleveland Clinic. Can you tell me which Doctor you are using? Did he talk about the jugular at all ( you may not have that version)? Did they do teleconferencing? It seems there were exceptions during Covid that many states have taken away. Indiana allows teleconferencing but I think the Doctor has to register.

Good luck with your surgery.

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Is your surgery scheduled for Oct 11th? If so I would think you should be okay to travel for Thanksgiving, although you might feel stiff if you need to drive for long…If you’re sharing the driving then hopefully that would be fine, you could take a neck pillow to make it more comfy…Some members fly home after their surgeries so it can be done, but I wouldn’t think you’d feel like being away for Christmas that close to surgery. You can’t always eat properly after surgery, so might need smoothies or soft foods which would be awkward…

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@JugularEagle I am seeing Dr. Lamarre on October 11. If all goes well, I’d have surgery after at a later date. I haven’t heard if I have issues with the jugular. I’ll find out. I live in Cleveland, so I’ll go in person. But I do think they have virtual appointments. I’ve had that with other doctors at CC.

I hope you can find a doctor soon. I’ve heard great things about him.

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