Got a first X ray with calcified styloid process, need ur help

[junonbss]

Hello everyone,

I’m a 28-year-old woman from France, and I’m looking for advice because my dentist recently suspected Eagle syndrome after reviewing my panoramic X-ray. He found a calcified left stylohyoid ligament and referred me to a specialist. I found him on a podcast in France called “symptômes” where a woman got exactly the same symptoms as me. This dentist practice near my city so i got a quick appointment : he is called Dr Sacha AYACHE and he is very sweet.

My story is quite complex, so I’ll try to summarize it.

About 10 years ago, after thyroid cancer surgery, I developed constant pain at the base of my skull on the right side (occipital region). Over the years I have tried many treatments, including occipital nerve radiofrequency ablation in the operating room, but nothing has ever helped. This pain comes ang goes but has never gone away over the past 10 years.

Then, about 1½ years ago, I had a complicated lower left wisdom tooth extraction. I developed a severe dry socket (alveolar osteitis) that lasted for weeks and required several procedures, including flap surgery.

Since that extraction, everything has become much worse.

My symptoms include:

• Constant burning pain on the left side of my face.
• Severe jaw pain.
• Tooth pain and occasional numbness/tingling in my teeth.
• Ear pain.
• Pain around my eye and nose.
• Very severe neck pain.
• Extreme tightness of my SCM muscle, trapezius, scalene muscles, pectoral muscles, shoulder and shoulder blade.
• Pain radiating into my chest and left arm.
• Pain that sometimes starts deep in the tonsil area.
• Sometimes I feel faint or experience chest tightness.

I have been treated by a pain specialist for a long time but she doesn’t know about this X ray yet.

I currently take:

• Effexor (venlafaxine) 150 mg
• Lyrica (pregabalin) 75 mg
• Codeine everyday because without it I cant get through the day.

I have also tried many other medications, but none of them have provided any significant relief.

The only medications that sometimes reduce the pain a little are Valium (diazepam) and baclofen.

For more than a year, I have also been undergoing specialized physiotherapy with ultrasound-guided dry needling and neuromodulation targeting my SCM muscle and the muscles around my trigeminal nerve in my jaw but unfortunately I have had no lasting improvement.

My muscles are full of trigger points, but even after more than a year of treatment they remain extremely tight. They are all along my neck, my SCM muscle, my scalene muscle, under my collarbone (there are extremely sensitive and cause refered pain in my arm and occiput.

I don’t know if this can be related to ES but since my cancer (at 17 yo) my parathyroid glands were permanently damaged during the surgery and i also developed recurrent laryngeal nerve paralysis. Many nodes were removed along my SCOM at the right side so i got a big scar (it’s not a problem she’s well now i will show you). As a result, my parathyroid glands no longer function and my body no longer produces parathyroid hormone (PTH). I have a permanent hypoparathyroidism, which is a rare condition. Because of this, I have to take calcium and active vitamin D (alfacalcidol) for the rest of my life to keep my level of calcium stable. It can causes multiple symptoms like muscle cramps and spasms, muscles stifness, tingling and numbness, fatigue, anxiety etc etc. Fortunately there is finally some good news : PTH replacement therapy has recently become available and i should be able to start it in september. Im really hopeful that will improve my quality of life.

To relate this to ES, i wonder taking calcium supplements for so many years, together with my altered calcium metabolism, may have contributed to the calcification of my stylohyoid ligament. It can cause multiple problems like calcifications … so i don’t know if this is important in the diagnosis.

Sometimes i wonder if I may have both conditions. My hypoparathyroidism is rare and misunderstood, juste like ES. Perhaps they may both contributing to my symptoms which might explain why my case has been so difficult to understand and treat.

My dentist believes the calcified stylohyoid ligament could explain my symptoms, and after reading about Eagle syndrome, many of the symptoms seem to fit.

Do these symptoms sound familiar to anyone here?

Has anyone experienced symptoms involving the neck, shoulder, chest, arm, or occipital region that improved after styloidectomy?

I would really appreciate hearing about your experiences while I wait for my appointment with my maxillo-facial doctor.

Sorry for the long post! I’ve attached my panoramic X-ray and my medical report to this post. I’ve also included a photo of my neck scar from my thyroid surgery.

Thank you so much for taking the time to read my story. It truly means a lot to me.

[junonbss]

This are my X ray and photos. Sorry the medical report is in french!

[Jules]

Hi and welcome to the site!
Wow, you have been through the wars, and to have had that surgery at your age is really rough! My Nan had hypoparathyroidism after thyroid surgery too, her parathyroid glands were removed by mistake though. I hope that the new treatment will help you!
Trauma to the neck, and tonsillectomy surgery are know causes of ES, so potentially the thyroid surgery you had could have triggered that inflammatory response and elongation of the styloids, and/ or the calcium tablets you’re on, we have had members who’ve had hypercalcemia or other metabolic disorders too… And having symptoms start up or ramp up with dental procedures is also very common, so you have a triple whammy!
There’s more detailed info about the different nerves which can be affected, but briefly shoulder and arm pain can be caused by the spinal accessory nerve being irritated, neck pain is common due to inflammation in the area, tight muscles, and from the glossopharyngeal nerve, again neck tightness can compress the occipital nerve causing pain, and also if the internal jugular veins are compressed by the styloids, then this can cause other veins to swell (collateral veins) in the back of the head, which can be painful.
Here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
We have had some members from France struggle to get a diagnosis, there don’t seem to be many doctors who diagnose and treat this, do you know if the doctor you’re waiting to see does? If not perhaps be prepared for them to be dismissive, but it’s great you were able to see the dentist and get diagnosed, your styloids are certainly long! Hopefully the doctor you see will be helpful though!

[junonbss]

Hi Jules,

Thank you so much for taking the time to reply to my post. Your message was incredibly kind and reassuring. It really means a lot to me.

I was very touched to read about your grandmother. I’m so sorry she had to go through hypoparathyroidism after her thyroid surgery. It can be a very difficult condition to live with.

What you wrote about neck trauma, thyroid surgery, calcium metabolism and dental procedures was very interesting. It really gives me hope that I might finally be getting closer to an explanation after so many years.

My dentist was actually the first healthcare professional to notice the calcification on my panoramic X-ray. Until then, nobody had ever mentioned Eagle Syndrome to me, despite all the pain I’ve been living with.

I’m now waiting to see a maxillofacial surgeon in about one month. I really hope she is familiar with Eagle Syndrome and that she will order a CT scan with 3D reconstruction. Reading that some French patients have struggled to get diagnosed makes me a little nervous, but I’m trying to stay hopeful.

My pain became dramatically worse after a very complicated wisdom tooth extraction last year. I developed several infected dry sockets, and since then the pain on the left side of my face and neck has become unbearable.

Like many people on the forum, I also have severe neck pain, pain radiating into my left shoulder and arm, and chronic muscle tightness. I also suffer from occipital neuralgia and pain around my right eye, so I wonder if those symptoms could also be related.

One thing I find very strange is that the pain almost completely disappears while I’m asleep, then gradually returns after I wake up and becomes worse as the day goes on. Have you ever heard of anyone else experiencing this?

Also my pain can be one day on the left side and without and explanation switch totally to the right side. Nobody can explain me this.

Thank you again for your kindness and for sharing your knowledge with me. Finding this community has made me feel much less alone, and I’m very grateful for all your support.

Best wishes,

Julie

[MGORNEAU]

@junonbss

One thing I find very strange is that the pain almost completely disappears while I’m asleep, then gradually returns after I wake up and becomes worse as the day goes on. Have you ever heard of anyone else experiencing this?

@junonbss You are not alone with the pain almost completely disappearing while asleep. I had/have the same experience.

I have had bilateral styloidectomy, and many symptoms improved afterward, lightheadedness, brain fog, muffled hearing, and others. But when I am upright throughout the day, the pressure still builds on the right back side of my skull, into my eye, and the nerve pain escalates. It is a miserable experience and can be so painful.

I do believe elongated styloids can contribute to these symptoms, including eye/temple pressure and nerve pain. But I also know that other factors can be involved too, such as fascial banding, calcification in other areas, upper cervical issues, vascular/venous flow issues, or nerve irritation.

So yes, I definitely recognize the pattern you are describing. For me, symptoms being better lying down was a major clue that something positional/mechanical was involved. I pray you find answers soon. You are so young, I cannot imagine going through this at your age. I am so sorry you are going through this.

[Isaiah_40_31]

WOW! The incision you had for your thyroidectomy is impressive. I’m glad it’s healed well & is hopefully not very visible now. We’ve found a similar situation with ES surgeries. The incisions in the neck can look perfectly awful after surgery but they become nearly invisible once healed.

I will say a prayer that the maxillofacial doctor will know about ES & if she doesn’t, that she will be willing to learn about it so she can help you. Your styloids are bilaterally elongated (I’m surprised the dentist who diagnosed the left side didn’t also comment on the right one!) so both will likely need to be shortened as close to your skull base as possible for you to get good resolution or reduction of your symptoms.

[junonbss]

Hello Mgorneau,

Thank you so much for your thoughtful and compassionate reply.

Reading that you experienced the same near-complete disappearance of pain while sleeping was incredibly reassuring. For years, I thought I was the only one, and no doctor has ever been able to explain why this happens. Knowing that someone else with Eagle Syndrome experienced the same thing gives me hope that there may finally be an explanation.

Your improvement after bilateral styloidectomy is also very encouraging. I’m so happy to hear that many of your symptoms improved.

May I ask you a question? Am I one of the youngest people with this condition? Everyone seems shocked that I’m dealing with this at my age, so I was wondering if it’s really that uncommon …

I’m currently waiting for my appointment with a maxillofacial surgeon and until then, I’m just trying to manage the pain one day at a time.

Thank you for your kindness, your prayers, and your encouragement.

Julie

[junonbss]

Hi Isaiah,

Thank you so much for your kind words and for keeping me in your prayer.

My scar has healed very well and is barely visible now, so I’m very grateful for that. The surgery itself was a success against cancer but unfortunately I’ve had to live with hypoparathyroidism ever since and all this pain so… I Hope for a real recovery. I’ve seen so many doctors over the years, it’s crazy!

I dont know if the maxillofacial surgeon I will see next month know ES but she was recommended by the dentist. If not, I hope she will be willing to learn more about it and order the appropriate CT scan. Waiting is the hardest part because the pain is constant every day and I have so much Hope right now!!

Thank you for pointing out that both styloid processes appear elongated. I noticed both sides myself that’s why I circle them but at my appointment I only talk about left side cause it’s the worst pain it’s crucifying and so my dentist only mentioned the left. At the right side my occipital neuralgia and pain around my right eye is there since 10 year so I learn to live with it.. yes

So now I’m wondering if both sides could actually be contributing to my symptoms.

Can I ask you one more question? Am I unusually young to be experiencing Eagle Syndrome? Everyone on the forum seems surprised by my age, and it made me wonder if cases like mine are uncommon.

Thank you again for your kindness, your encouragement, and your prayers. Finding this community has given me hope after so many years of searching for answers.

God bless you,

Julie

[MGORNEAU]

@junonbss I honestly do not know if you are one of the youngest, there are quite a few younger people on this forum with elongated styloids and Eagle-type symptoms. That said, it does seem like many of us are diagnosed in our 40s, 50s, or later. I think that may be partly because Eagle Syndrome often is not recognized, and partly because symptoms may not present immediately or can become progressive over time, as they did in my case.

I will be praying that your appointment with the maxillofacial surgeon is productive and that she is willing to order a CT scan with 3D reconstruction so your styloids and surrounding structures can be properly evaluated. Either way, please continue advocating for yourself as you have been. There are doctors who are familiar with Eagle Syndrome and the associated issues it can cause. It can just take time to find the right one.

Please keep us posted after your appointment, I’ll be praying it brings you some clarity and a real path forward.

[Jules]

No, you’re not the youngest, we’ve had some members who are parents to teens diagnosed with ES. One of the Mum’s wrote a book about her son’s experience, I’m not sure how old he was but his styloids did grow back so he had to have two lots of surgery, here’s a link:
What do you know about Dr. Newman at Penn? - General - Living with Eagle
But we do find more members are older, we think it’s possibly because although they might have had elongated styloid processes for years, as our bodies age and connective tissues aren’t as tight, it could shift the structures in the neck enough to start to cause more symptoms- the neck is such a tight space with major blood vessels and cranial nerves there, that a shift of even a few millimetres could be enough to bring the styloids into contact with them.
If your dentist recommended the doctor you’re seeing then hopefully she’ll be helpful

[Steven1976]

Hi. You said something positional or mechanical was the problem. Do you meant that it was the styloids and styloidectomy helped or it was something else?

[MGORNEAU]

Hi @Steven1976

For me, the styloidectomy did help with multiple symptoms that were more aggravated depending on position and physical activity, including lightheadedness, ear fullness/muffled hearing, neck/facial swelling and brain fog.

However, it did not relieve all of my positional symptoms. I still have pressure that builds on the back right side of my head and goes into my eye, along with nerve pain on the right side of my mouth and face. These symptoms are still greatly relieved by lying down. They used to almost completely go away when I was lying down, except for some nerve pain, but now they are more constant, just less intense when I am lying down.

So in my case, I do believe the styloids were contributing, because removing them improved several symptoms. But I also think there is another piece still involved.

I am still searching for answers for that remaining piece. In my case, it may relate to a bridged ponticulus posticus/arcuate foramen (Dr. Aghayev identified) or a fascial band/lesion that was noted at C1, possibly caused or aggravated by the elongated styloid or pressure from surrounding structures.

I do feel I am on the right path toward answers, and I will definitely post an update once I know what was causing this remaining piece.

[lsheep]

Wow, @junonbss you have been through so much and are amazing! You also have some pretty impressive styloids from your pano.

I am a little older than you (35), but I have been dealing with symptoms for 3 years now. It definitely seems like being young and female (at least in the US) impacts getting a doctor to look more indepth to your symptoms and a unfortunately a later diagnosis.

[Isaiah_40_31]

@junonbss -

@junonbss

So now I’m wondering if both sides could actually be contributing to my symptoms.

It’s very common for symptoms to be worse on one side than the other when there is bilateral styloid elongation. My right side didn’t really have terrible symptoms. Mine were mostly on the left but my surgeon didn’t like the angle of my right styloid so he shortened that one first. Amazingly some very annoying symptoms disappears, however, about 2 months post op, the symptoms on my left side flared up & became even worse than before surgery.

What we’ve learned on this forum is when there is bilateral styloid elongation, the symptoms from one side can mask or make it difficult to know what symptoms the other side is causing. Once one side is shortened, the symptoms the remaining styloid is causing become much more obvious.

[junonbss]

Hi MGORNEAU,
Thank you so much for your kind and encouraging message.
I will definitely look into Eagle Syndrome in younger patients. It is reassuring to know that there are other younger people with similar symptoms, even if many patients are diagnosed much later in life.
Thank you for encouraging me to keep advocating for myself. I promise I won’t give up, and I will continue to stand up for myself until I finally get the answers I’ve been searching for after seeing so many doctors over the years.
I really hope this maxillofacial surgeon will be the right one. I’m trying to stay hopeful.
I promise I’ll keep you all updated after my appointment. I’m so grateful to have found such a caring and supportive community.
Thank you again for your prayers, your kindness, and your encouragement

[junonbss]

Hi Jules,
Thank you so much for taking the time to answer my question.
It is reassuring to know that I’m not the youngest person to experience Eagle Syndrome. I will definitely read the story you shared about the teenager. Thank you for sending me the link.
Your explanation about why many people develop symptoms later in life makes a lot of sense. I had never thought about the role that aging and changes in the soft tissues of the neck could play. It’s fascinating how even a few millimeters can make such a big difference in such a small area filled with nerves and blood vessels.
My dentist did recommend this maxillofacial surgeon, so I’m really hoping she is familiar with Eagle Syndrome or at least willing to investigate it properly. After seeing so many doctors over the years, I truly hope this appointment will finally bring some answers.
Thank you again for your kindness, your support, and your prayers. I promise I will keep everyone updated after my appointment !

[junonbss]

Hi Isheep,
Thank you so much for your kind words. They really touched me.
I’m so sorry that you’ve been dealing with these symptoms for the past three years. I truly hope you will find relief soon as well.
I completely agree with what you said. Sometimes I feel that being a young woman has made it harder for doctors to fully investigate my symptoms. I’ve seen so many doctors over the past ten years, and for a long time I felt like nobody could explain what I was experiencing.
It was actually my dentist who first noticed my styloid processes on the panoramic X-ray and I didn’t know this syndrom exist before. I found this type of symptoms on a podcast, I was really hopeful for me when I first heard it.
Thank you for taking the time to encourage me. Finding this community has given me so much hope, and it’s comforting to meet people who truly understand what living with these symptoms feels like.
I wish you all the best, and I hope we will both have good news to share soon.

[junonbss]

Thank you so much for taking the time to explain this to me. That is really interesting, and I had never thought about it that way.
Your experience makes a lot of sense. Since almost all of my pain is on the left side, I naturally assumed that my left styloid was the only problem. But after reading your explanation, I’m beginning to wonder if my right styloid could also be contributing without me realizing it.
So now I understand maybe why I got a occipital nevralgia on the right side too since so many years.
I really hope the CT scan will help clarify everything. I hope I am finally getting closer to understanding what is happening.
Thank you again for sharing your experience and for taking the time to help me. Everyone on this forum has been incredibly kind, and I am so grateful for all of your support.
I’ll definitely keep you all updated after my appointment. And maybe I will got my styloids removed soon ! Just hope definitively

One thing who help me during this process after many years is dry needling, it help my muscles to calm down their spasms a little bit. But the relief doesn’t last very long, maybe few times. I see this specialist once every 2 weeks

[k938271r]

i am currently experiencing the same exact symptoms i wake up feeling good and throughout the day it gets worse and worse. i am still in the process of finding a doctor.

[MGORNEAU]

@k938271r I found your original post with the images. From what I can see, not only could your styloids potentially be contributing, but it also looks like you may have a complete bridged ponticulus posticus / arcuate foramen on the right side. The left side also looks suspicious to me for possible bridging, though it is harder to tell from the angle.

They often say ponticulus posticus is “typically asymptomatic,” but they say the same thing about Eagle Syndrome.

I have ponticulus posticus / arcuate foramen, completely bridged on my right side. Dr. Aghayev found it after my bilateral styloidectomy, and I am in the process of following next steps to investigate its contribution to my remaining symptoms, which were also part of my original symptoms.

Like you I also started with sinus surgery in 2020, which did not help, followed by a total right parotidectomy in 2022 after the duct system sealed over. I also had a saliva stone come out in 2021. When I asked the surgeon if all the swelling in my neck/face could have contributed, he said yes.

After my bilateral styloidectomy, the first thing I noticed was a reduction in my facial/neck swelling. That said, I still have swelling on the right side, just not as aggressive as before.

Dr. James Liu in New Jersey has been very helpful for a lot of Eagle Syndrome patients who have been dismissed elsewhere. His remote consult is $500, and his intake form is very thorough. I cannot speak from personal experience, but since you are not terribly far away, he may be a good option to consider for another opinion.