First time posting..Your opinions will help a lot! (+ct scans)

[gmal07]

Hello!
After quietly reading posts on this blog I decided that i should finally ask for opinions about my condition and overall situation.
First of all let me thank you all for the fact that just reading about your experiences has helped me a lot in the past!

So… 4-5 years ago i started noticing some burning pain in my neck and throat, and was starting to have weird brain fog … it was progressivly getting worst and worst but i could not find the cause … did various medical checks but none were helpful… i was also really struggling with my mental health due to the fact that nobody seemed to know what was going on with me…

During a routine exam that was supposed to check my wisdom teeth (Dental X-Ray) , my dentist told me that my styloids were elongated… I did not know anything about these bones, so i honestly didnt even thought that an elongation of them could cause any symptom or discomfort.
After some years, i started to investingate my symptoms and found online about ES… so i went to my dentist and asked if my pain could be caused by this condition… he replied me that “it might be”, so he gave me a bite for my bruxism, and suggested me to try to fix my really bad posture and do some speech therapy (i have troubles with swallowing and i just dont know how to use my tongue). Since i was really busy with uni stuff and i was living far away from my dentist studio, i kind of ignored his suggestions.

Approximately 2 years ago i finally decided to take a ct scan… the medical report of the scan was “negative” and they told they could not find any issues with it beside my slitghly deviated nasal septum (they probably dont even know what Eagle Syndrome is…). Thats when i remembered about a post on this blog where someone explained how to generate the 3d model of a ct scan…
So thats what i did.
Here are my stiloyds!

I know they are pretty large and long… they are causing a lot of pain and discomfot for sure…
Now I am in contact with doctor Vincenzo Calabrese, but I am scared and unsure about whether or not i should get the surgery done.

I would like to know if my condition is causing or might be cause cardiac issues in the future and which exams i should get done in order to know if my styloids are compressing veins in my neck…
I think i could deal with the sever nerve pain for now, but in case i undestand that my ES is also causing vascular issues, so i will need to get this surgery done as soon as possible…

Also, i have my bottom wisdom teeth that are stuck in my gums… do you think its a great idea to get them removed?

Now I am working on my bad posture and doing logopedic therapy… This is really helping me with the pain and i personally would suggest to anyone to be more self aware about their posture…

Thank you for reading, i will really appreciate anyone that will give me some insights on what should i do next in order to try and live a “great” and “normal” life…

byeee

[Snapple2020]

Those look pretty dang big and thick to me!!! Anyway to measure the length in the software you are using? I suspect substantial length. Anything over 2.5 cm with symptoms is eagles territory.
As for Ct scan. The ordering doctor needs to request the radiologist re-review the scan for possible Eagles diagnosis. Sometimes, it is overlooked unless that is requested. However I would suggest you seek out an Eagles specialist to review the scan and confirm the diagnosis.
I also have TMJ and started feeling like a bone in my throat and when I swallowed it sent shooting nerve pain up my neck to my ear. This is classic ES symptoms. Gmal, you are on the right track. Just need to see the right doctor who actually believes in the diagnosis and knows how to treat it.

[Snapple2020]

I have Ehlers Danlos Hypermobility and have pretty poor posture myself. Although improving posture might help, I suggest a good physical therapist or occupational therapist who specializes in structural medicine body work. I have also found massage and cranial sacral manipulation helpful. Ultimately surgery may be the only fix when it comes to styloids of this size. It rarely does not progress over the years as you age. As for wisdom teeth I dont know your age but a good oral surgeon might be worth speaking to about that. I would consider the wisdom teeth a separate issue.

[Isaiah_40_31]

Hi gmal07!

Welcome back! I’m glad the information you’ve found here has been helpful. If you haven’t read the two posts which Jules wrote about ES symptoms, they are worth your time & will help you verify which symptoms you have are from ES. These symptoms will likely go away or at least reduce once your styloids are removed. Your styloids are very long & the left one looks quite thick. The angle & thickness of the styloids are often what contribute to vascular compression - either of the internal jugular vein (IJV) or of the internal carotid artery (ICA). Brain fog is often associated w/ IJV compression. Also, the problems you’re having with your tongue can be a symptom of ES as the glossopharyngeal nerve is often irritated by elongated styloids, & that nerve affects tongue function.

As you pointed out, your poor posture has caused you to have “military neck” i.e. you have lost the lordotic curve in your cervical vertebrae. This can be clearly seen in the first image you posted above. Here are pictures of a military neck vs a normal neck. This can be corrected w/ physical therapy & working on proper posture: https://www.google.com/imgres?imgurl=https%3A%2F%2Fi0.wp.com%2Fimages-prod.healthline.com%2Fhlcmsresource%2Fimages%2F3762-Military_Neck_642x361.jpg%3Fw%3D1155%26h%3D758&imgrefurl=https%3A%2F%2Fwww.healthline.com%2Fhealth%2Fmilitary-neck&tbnid=iyNKFXW6I4iWBM&vet=12ahUKEwj43c3wjqn4AhVvkGoFHaaUA2kQMygBegUIARDIAQ..i&docid=p1hFFojq0Rq6vM&w=642&h=361&q=neck%20lordosis&client=safari&ved=2ahUKEwj43c3wjqn4AhVvkGoFHaaUA2kQMygBegUIARDIAQ

It is my personal opinion that getting your styloids removed would make a huge difference in how you feel. Your impacted wisdom teeth can wait as they may cause pain but the styloids are a bigger problem for you.

I think we’ve had a couple other members from Italy who’ve tried to see Dr. Calabrese for ES, but we’ve never heard whether they did or not. I know during COVID the wait time to get an appointment with him was quite long so you should call his office soon to try to schedule an appointment. You can always cancel it later if you decide seeing him isn’t the right thing to do.

Here are links to the two posts Jules wrote:

ES Information: Common Symptoms And Possible Explanations For Them

ES Information: Common Symptoms And Possible Explanations For Their Causes: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used…

ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular

Eagle Syndrome Information: Background- Including Anatomy, Classic or Vascular?, Length Vs Angulation: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and…

[Jules]

Wow, they are long, the ‘joint’ on the right side styloid could well be calcified stylo-hyoid ligament. If you’re able to get a CT with contrast then that would show any compression of the blood vessels if you’re concerned about that, although if you have a look at the info about symptoms @Isaiah_40_31 has posted the link to, you could see if it’s likely you have vascular ES. If you don’t have symptoms, then it’s probably not worth having the contrast CT as there is a slight risk of a reaction to the dye, & the extra radiation too…
There are medications which can help with nerve pain if you’ve not tried any- like Gabapentin, Lyrica, Amitriptyline, Carbamazepine. The only thing I’d say about the nerve pain is that if it is compression/ irritation of the nerves by the styloids, then it’s unlikely to go away, & could worsen with time. I’m guessing you’re not that old, so you could potentially be on the meds for a long time…It’s a difficult decision as the surgery isn’t without risk, so you need to weigh up quality of life now against that risk, that’s something we all have to do for ourselves. I understand how you feel about having surgery if there’s vascular issues- that’s what made my mind up to go for surgery.
As for your wisdom teeth, that’s another tricky one! For years I put down my jaw & ear pain down to wisdom teeth, I never got anything done about them as the dentists couldn’t agree, & I was daunted by it! Since the ES surgery I realised it was ES causing the symptoms & not my wisdom teeth! If you were to have them removed then the pulling & tugging involved could make your ES symptoms worse, I’d be inclined to not have them out unless you’re sure that they’re causing issues…
Glad that improving your posture has helped!

[gmal07]

Hello, sorry for the late reply and thank you all so much for the help …
I have carefully read all of your replies …
My most annoying symptoms are those related to my hearing … in fact i have a constatly muffed hearing, pressure in the ears, tinnitus, and i am really sensitive to sound in general … These symptoms often cause me depression because I am a musician and i work with sound …

In your experiences, will the surgery be helpful for these kind of issues? I have read that some people say that their hearing have gotten worse after surgery, whilts others says that the surgery helped …

[Isaiah_40_31]

Hi @gmal07 - Generally, surgery helps w/ pre-op hearing issues IF they’re caused by ES. In some cases people have had hearing worsen after surgery, but I believe that was due to post op swelling. Once the swelling goes down, the increased hearing loss/fuzziness tends to go away & often the overall hearing has improved. There is no way to predict if your hearing symptoms are caused by ES w/o getting your elongated styloid(s) removed & seeing if your symptoms resolve. If you’re seeing a knowledgeable ENT, hopefully that doctor will do testing to try to determine the source of the pressure, tinnitus, & hyperacusis (sound sensitivity). If there is no other obvious problem, then it could be down to ES causing it.

[Jules]

For me the ear pressure was caused by bilateral jugular compression from the styloids, and pulsatile tinnitus too, & surgery has made a massive difference to that. I think the over sensitivity to sound has improved a bit, the ‘normal’ tinnitus seems the same for me but it’s only a little bit & doesn’t worry me too much.
Difficult decision for you…

[gmal07]

Thanks again, if i could fix my hearing just a bit then i think the surgery will be worth it…
i will try to get a visit with an expert doctor in Eagle Syndrome and see what he thinks about my case…
Will keep updating this post, for now thank you all!