Eagle-Syndrome or something else?

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Hello everyone, I am very happy and grateful to have found this forum!

First I would like to introduce my existing illnesses:

I had a complete thyroid removal.I have polyneuropathy and MS symptoms, but no confirmed MS. Both legs are numb and have abnormal sensations and paresthesias extending up to the hips. I get tired quickly and have a mild form of CFS. Years ago I had an EBV-Infection. Then the problems described above began.

I also have problems throughout my spine with many protrusions and one hemangiom.

A few years ago I got dental implants, seven in my upper jaw and two in my lower jaw. After half a year the following problems began:

  • strong pressure in the upper jaw and feelings of tension
  • pressure in the palate
  • pain above the eyebrows, especially on the right side near the root of the nose, very sensitive to fingerpressure
  • strong jaw cracking on the left but jaw joint pain on the right side
  • for a while I had severe dizziness. But things got better when my cervical spine was realigned
  • Muscle pain on the right side of the neck and shoulder

These symptoms came and went and sometimes they disappeared completely.

These symptoms worsened when looking at the cell phone for a long time, when I was crocheting or sitting at PC. But I noticed these problems most noticeably when I lay down. That’s why it often takes a long time for me to fall asleep.
And it’s always a surprise how I wake up. Sometimes the problems are almost gone when I wake up or they are really bad. I can only sleep on my back.

The problems also occur more frequently depending on which chair I am sitting or when driving a car.

An X-ray and a 3D CT scan 2 years ago revealed an elongated styloid on the right side. But I had other problems at that time and couldn’t pursue it any further.

Lately I’ve been crocheting a lot for a project again. And I have noticed a new symptom that is really bothering me.

From the right jaw joint diagonally to the upper jaw and into lower jaw I feel a muscle that is pulsating, especially when I lie down,
together with a pulling nerve pain. And muscles on the right side of the neck and shoulder have very painful pressure points.

I don’t have any pressure pain in my tonsils or any further other typical described es - symptoms.

I plan to do another 3D CD scan to determine the length of the styloid. How can I be sure whether it is now the eagle-syndrome or something else?

Since my health is generally poor, I am also afraid of an operation and how I would tolerate it.
I am very grateful for every advice and please excuse my English, I am German, but live at the moment in Turkey.

Since I can’t look at my phone for that long, it will take some time to go through all the information and testimonials in this forum.

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I’m sorry that you have so many health issues, it does make it harder when people have other conditions to know what is causing which symptom.
Looking down at your phone/ crocheting etc could easily worsen symptoms as the styloid might then come into contact with different nerves. It does sound as if you could have Trigeminal Neuralgia with the pain in your face & the pressure, or possibly this could be from the Facial nerve, both are commonly affected by the styloids. The muscle pain on your right side could also be caused by irritation of the accessory nerve. The history of this coming on after dental work is something others have mentioned too.
It’s difficult to say whether the jaw pain is from ES; lots of members have also had temporomandibular joint dysfunction alongside the ES & it can cause these symptoms- if you’re able to get this investigated too that might give you an idea of whether ES is causing it or deteriorating jaw joints…
I didn’t ever have some of the typical ES symptoms of pain swallowing or pain in the throat either, so it doesn’t necessarily rule out ES.
It might be a good idea to see if you can get an up to date CT done next, & to look into TMJD with a dentist who is knowledgeable. And if you haven’t already tried them, nerve pain medications like Gabapentin or Amitriptyline might help? Muscle relaxants might also help you, & I would try ice or heat on your neck, jaw and shoulders as sometimes that helps. If you’re able to find an ENT to do a steroid/ lidocaine injection into the area of the styloids, this could potentially help you manage symptoms conservatively, it’s understandable that you don’t want surgery if you can help it…I’m not sure with your back problems if you could sleep propped up a bit? That can sometimes help too.
You’re English is fine! I hope that you find the site helpful when you’re able to read the info :hugs:

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@Laurianna, Welcome to our forum!

I’m sorry you have several major health challenges going on at once. You’re the first person I recall noting that you have nose pain which I also had & was able to have my ENT confirm it was from my trigeminal nerve. That pain is gone since I had my left styloid removed. I had many other symptoms, some similar to yours which have mostly gone away since my styloidectomies (both of mine were long) in 2014 & 2015.

You noted your symptoms are worse when you look down. This may be because of what Jules told you but also may be due to the loss of the curve in your cervical spine. Our necks have a curve in them that forms naturally when we are babies as we lift our heads up & arch our backs in preparation for crawling. As we age & do a lot of work looking down & especially now w/ computers & cell phones, that natural curve can straighten out & having straight cervical vertebrae puts a lot of stress on the upper spine which can refer down to the mid & lower spine where there are nerves that affect the legs & feet. The neck curve can be restored but it takes time and may require physical therapy. One of our members put together a list of information and videos about the neck which might help you, too.

@Jules has offered you a number of non-surgical options to try to see if any of them help relieve your symptoms, but I also want to share the name of a doctor in Turkey whom we recently became aware of and who is very experienced w/ ES. Seeing him if you are able to might give you some answers. We now have had some members from the US call him for a consult or travel to see him for help w/ ES.
•Dr. Kamran Aghayev - https://kamranaghayev.com

Please let us know the results if you get a new CT scan.

:blush:

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