Undiagnosed, CT results, my symptoms, ES? and questions

[dje1976]

Hello everyone, thanks for reading this. Here is the ‘short’ version of my story: Male, 43.

About 2 yrs ago: Hit to side of face with hockey stick wearing full mask. No loss of consciousness. Seemed ok that day. Headache the next day. One week later: severe temple headache on right side (side of impact). Head MRI, EEG, Head CT, neuro exam all negative. Dizziness, nausea, tinnitus. Treated for concussion. Headaches got better but never went away. Dizziness, nausea went away. Tinnitus never went away. Not sleeping well, anxiety on the rise. Was diagnosed with moderate obstructive sleep apnea, started CPAP therapy.

1 year ago: Headaches came back, pain in the temple area, worse when chewing/talking/physical activity. Noticed tinnitus was worse when clenching teeth or looking down. Thought headaches and tinnitus were from TMJ disorder. Have a narrow jaw, narrow airway, cross bite. Started TMJ therapy (wearing bite guard at night, then one to wear 24/7, tried acupuncture, massage, tens, botox, Phys. therapy). TMJ therapy did not significantly reduce headaches. Went to headache clinic, tried different meds (neurontin-not much relief, muscle relaxers-some small relief).

2 months ago: Dr. ordered neck CT: Elongated styloid process (3.8, and 3.9cm). Bilateral compression of jugular veins. The radiologist report says this ‘can be seen in the setting of ES’ but does not say I have ES… Headache Dr. and ENT both said this is not significant, not ES.

So still have:
Daily headaches on right side temple area between 2-6 out of 10. Flare ups can be 7-8. Some headache on the left side, maybe 1-3 out of 10.
Worse with activity, worse after chewing, worse after talking
Need to rest throughout the day due to headaches
Slightly restricted jaw opening (~40mm), tight jaw muscles
Right hand colder than left. Not always, in certain body positions
Neck tight, but not really pain
Tinnitus, both sides, high frequency noise, no hearing issues.
No throat pain, I have a narrow airway but I don’t really have a problem swallowing.

I am interested in any feedback if this sounds like ES. Can you have ES without throat pain? My ENT said no throat pain means no ES. Said the bilateral jugular compression did not mean ES. If this is correct then I can probably move on, but there seems to be overlap between my symptoms and test results.

I see a lot of people post they have TMJ issues, I found that interesting that some have stated they were mis-diagnosed with TMJ. I have tried TMJ treatments without much success.

Talking and chewing really can flare up my headaches (temple area), anyone else have that?

I am in michigan, I saw some people had to go out of state for a proper diagnosis/treatment. The closest ENT on the Dr list needs a referral to see. I saw someone else in the same office hoping they would be familiar with ES, but the response was no throat pain no ES.

Thank you,

[Isaiah_40_31]

Hi dje1976 !

Welcome (again! ) to our forum. I’m sure other members will reply to your post, but I guess I’m first in line.

The definition of Eagle Syndrome is 1) elongation of the styloid process(es) i.e. any length beyond 2.5-3 cm OR 2) calcification of the stylohyoid ligament OR 3) a combo of #1 & #2. Measuring the length of the styloid process on a CT scan is not an exact science so two different radiologists reading the same scan may come up w/ different length measurements. Regardless of all that, your styloid measurements register as elongated as they’re beyond even the 3 cm mark.

Though a sore throat is often a symptom of ES it is not the defining symptom - styloid elongation &/or s-h ligament calcification are what define ES. We have members on this forum who did not have sore throats from ES.

My guess as to part of the source of your pain especially when chewing, jaw opening, talking, & temple headaches are likely coming from your trigeminal nerve. The place you got hit by the hockey stick is more or less “home base” for that cranial nerve. I’ll attach links w/ a picture of the course it runs & the facial regions it affects. Your hand temps could be due to an irritated accessory nerve &/or vegus nerve. Both of these are also commonly affected by ES. Three other cranial nerves often affected by ES are the facial nerve, glossopharyngeal nerve & the hypoglossal nerve.

It is my perception that you have been misdiagnosed & that you need to see a doctor who is more familiar with ES & not dismissive because a certain symptom doesn’t exist. We are all built differently, so we don’t each respond the same way to an identical irritant. That is why using a particular type of pain can’t be a definitive diagnostic tool. It also seems that even doctors who know about ES get lost in understanding the root cause of the many & varied symptoms that can present. I see the answer as very simple: Cranial nerve irritation &/or vascular compression.

Understanding the courses the cranial nerves run, the body areas/systems they innervate, & the many crazy symptoms they can cause when irritated or damaged is key to understanding ES symptoms.

Dr. Cognetti or Dr. Newman in Philadelphia may be your best bets as far as being very experienced w/ ES though you would have to travel. Dr. Steven Chang in Detroit did do ES surgery for a forum member somewhat recently. You can use the magnifying glass to search posts where his name is mentioned.

Here are the links I promised:

Trigeminal nerve:

https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&ved=2ahUKEwjEs4vujOblAhXtFjQIHUSQDGIQjRx6BAgBEAQ&url=https%3A%2F%2Fcommons.wikimedia.org%2Fwiki%2FFile%3ATrigeminal_Nerve.png&psig=AOvVaw0yAwirpTBC2Lbsi8c5DFHb&ust=1573697149209119
Accessory nerve

https://i.pinimg.com/originals/42/6d/f5/426df5386dbb8bbc3ba8fdb5be714d66.jpg

Vegus nerve
https://www.google.com/imgres?imgurl=https%3A%2F%2Ftakefivemeditation.com%2Fwp-content%2Fuploads%2F2019%2F06%2Fvagus.jpg&imgrefurl=https%3A%2F%2Ftakefivemeditation.com%2Fwhat-happens-in-vagus-stays-in-vagus-aka-youve-got-nerve%2F&docid=BP1EML6PCqb15M&tbnid=WEYKepIcivpL2M%3A&vet=10ahUKEwitzOGYjOblAhXUup4KHc-tDUIQMwh4KAAwAA..i&w=800&h=956&client=safari&bih=785&biw=921&q=vagus%20nerve&ved=0ahUKEwitzOGYjOblAhXUup4KHc-tDUIQMwh4KAAwAA&iact=mrc&uact=8

[onelessstyloid]

Hi dje1976,
Welcome! You are quite correct to question the ENTs belief that everyone with ES has throat pain. I have definite ES with jugular compression and had amazing symptom improvement after my first surgery (second pending). I have never once experienced throat pain.

[Jules]

I had bilateral elongated styloids, bilateral jugular compression, NO THROAT PAIN! Never had pain swallowing etc. It’s beyond frustrating how doctors announce that people haven’t got ES because of one symptom, sometimes quite a random one! I had surgery & had a massive improvement in vascular symptoms. So don’t give up & keep trying!

[dje1976]

Thanks everyone for the information. I was able to make an appt. next month with Dr. Carlos Ramirez, he is on the list from Michigan, they were able to access my scan while on the phone and were able to give me an appt. without a referral.

[Jules]

Brilliant, well done! Hope it goes well!

[Isaiah_40_31]

That’s wonderful news, dje1976. Please let us know how your appointment goes!

[Painfree]

I kept think I was having acid reflux, but I caught on real fast the surgeon needed to hear the words throat pain. DUH! Once I stopped, slowed down, and accessed it was like dang my throat does hurt at times. I wish you the best.

[dje1976]

I got a copy of my scan on disk today. I have an appt. next week and looking into a phone consult with Dr. Cognetti.

[Isaiah_40_31]

WOW! Impressive styloids, dje1976. Getting those things outta there will help you a lot!!

I hope your phone consult next week goes well. Please let us know what you learn.

[Jules]

They do look pretty long & pointy…the process from your cervical process looks quite long (not an expert though!), & that’s narrowing the gap with the styloid, compressing the blood vessels. So getting the SP out should help!

[DeeG]

Wow, exactly what I thought the SPs do seem long and looks like they could cause routine and positional pain.

[Gwendolyn]

Please see Isaiah’s response to this post. Very encouraging!

I am in the same boat! Perhaps together we can keep it from sinking My reply will not be as awesome as Isaiah’s, she really knows her stuff!!!

Edit: From the other responses, I concur your styloid processes are long. Keep looking for help!

I do have some additional feedback. ( I have a medical and legal background, however I am not a physician. I studied neurobiology and behavior and neuroscience. I worked as a clinical trials monitor for pharmaceutical studies. I also studied fMRIs, which does not help here. This was years ago! Brief stint in law school. I ended up assessing injuries from automobile accidents. My credentials are mostly irrelevant, except I now spend loads of time researching.)

• I also have overlapping symptoms, made worse with a fall this January from a loft, where I fell on my head, the majority of the impact was directly on my left temple/upper rear cheek bone, and the left TMJ joint.

• I also have a narrow airway/underdeveloped jaw, my original diagnosis/plan was to have an appliance to expand my upper palate.

• I see you were diagnosed with moderate sleep apnea. Most doctors automatically say jaw clenching is a result of sleep apnea.

[This is true, but if you are clenching your jaw 24/7, like me, and have the 24/7 appliance (is it a lower appliance? That is very important). Do not stop your CPAP, your diagnosis might very well be accurate! Sleep Apnea is severely under diagnosed.]

Sooo…

• That being said, you have compression on your jugulars. You have a small airway. The compression might be a contributing factor for the sleep apnea.

• Has anyone examined your Sternocleidomastoid (SCM) muscles. Jaw clenching—-> tight SCM—>>> many Symptoms you describe. Please note this link is a really brief overview, I do not recommend trying any exercises without seeing a doctor. I tried, and Whoa Nellie! Pain pain pain!

I have a hypertonic (frozen) left SCM, and 4cm elongated styloid processes. Before I discovered the elongated styloid processes, I was attending Physical Therapy (Postural Restoration). It didn’t really help, but I was not the best patient.

I stopped PT as I do not want to screw up the styloid process (no idea if that can happen).

As for the trigeminal nerve pain, the chewing and talking problems you describe do fit. A trigeminal nerve block is not scary. A neurologist simply puts something up your nose, no pain, takes a few minutes.

I had this nerve block, unfortunately it didn’t help with chewing or talking. I hope it will benefit you.

If it doesn’t, do not despair. There are tons of cranial nerves, even within the trigeminal nerves, that can also contribute.

I look forward to seeing your updates, it gives me hope!

(I hope I did not violate any rules in this post) I have no affiliation with Healthline. I would not make conclusions based on their information)

[Isaiah_40_31]

Hi Gwendolyn,

Thank you for your helpful input. I can’t remember how specifically I discussed cranial nerves w/ you, but the trigeminal, facial, hypoglossal, glossopharyngeal, vagus & accessory nerves are the cranial nerves most often affected by ES. We’ve recently had several new members w/ SCM problems that were related to ES. Once the styloids were removed, the SCM was able to relax & stop protecting. You may find that to be true in your case. Trigeminal nerve pain also resolves w/ ES surgery in most cases. If you’re unfamiliar w/ the functions of the remaining nerves, Google them - both what they do & where they are in the body. It will help you to put the pieces of your symptoms together. The vagus nerve is the most wide-reaching of the cranial nerves affecting many critical body functions & causing pain & other problems from the skull through the neck, chest & into the gastrointestinal system.

Again, having the styloid(s) &/or calcified stylohyoid ligament(s) removed generally allows the irritated nerves & compressed vascular tissues to recover though it can take up to a year or more after surgery before things feel really good again.

I hope you’re able to find a doctor to help you soon so you can be on the path to healing from this “odd bird”.

[Gwendolyn]

Thank you! I really hope so! I did look into all of the major cranial nerves you suggested. As my neurologist would say, “all pain is caused by nerves“.

What I meant in my last post is that the cranial nerves, trigeminal, facial, hypoglossal, glossopharyngeal, vagus, accessory etc, expand into quite complex additional (not accessory) nerves, with overlap resulting from compression. From what I have gathered: It is the extensive nerve branches and overlap that really make ES complicated. I know nothing about ES, I am so happy to be here.

I wanted to relay possible alternatives…just in case. Especially bringing up the possibility of SCM involvement. Prior to surgery there are ways for some relief! I have put all my eggs in one basket so many times over the past 3.5 years… Just to be crushed from disappointment.

And if this is all ES, I will be so happy!I really really hope this is the answer.

My primary doctor’s latest theory - she admits she is well out of her depth - and if she is - I am quite the peon.

Her notes, which are not quite accurate, I am a work in progress.

She suspects glossopharyngeal neuralgia, with good reason. My Orofacial specialist is going to talk to her re: other major nerves.

“ The most likely etiology at this point seems to be glossopharyngeal neuralgia potentially from vascular compression of the cranial nerves IX and X at the level of the vertebral artery. It is unclear to me what anomaly this is however on her recent venous duplex she was found to have hypoplastic left vertebral artery with restrictive waveform”.

I will start my own thread! I am so excited to hear your input. You are wonderful!

[Isaiah_40_31]

Hi Gwendolyn,
Interesting diagnosis. It is possible the appearance of the vertebral artery hyperplasia is related to restriction being caused by your styloids/stylohyoid ligaments (if calcified). I recognize that hyperplasia is generally not caused by compression, but in this context, it seems like an option. You might want to ask your doctor is this is a possibility as opposed to true venous hyperplasia.

[Gwendolyn]

@Gwendolyn

hypoplastic left vertebral artery with restrictive waveform”.

@Isaiah_40_31

Oops, this is where she made an error:

The actual results from the ultrasound:

• “Left vertebral artery: hypoplastic with increased pulsatility compared to right, suggestive of possible distal obstruction versus hypoplastic.”

The left vertebral artery is hypoplastic with resistive waveforms suggestive of distal flow restriction vs hypoplasia.

I attempted to look this up… am I off base with the possibility of vertebrobasilar disease?

[dje1976]

Thanks Gwendolyn for the info. It is really interesting to hear eerily similar stories here. I do have a lower splint that I wear 24.7. I can’t tell how much it is helping but it does seem to give some relief… I do use my cpap and definitely need it now, looking back years ago I would always be a little tired. But once all this happened it seemed like all of a sudden I went from having no real sleep apnea symptoms to suddenly not being able to sleep more than an hour before getting woken up from having a bad apnea/choking. I do go to PT for my tmj but have not been told my scm is tight but I’ll check that link. I was given some lidocaine and some instructions from my Dr on how to do a self spg block through the nose, i think that isnkind of whatbyou are describing, I’ve tried but didn’t really help. I should have some updates next week so I’ll post what I find out.

[Isaiah_40_31]

Hi Gwendolyn,

I feel the words “suggestive of” & “restriction” are critical in this diagnostic review. Since elongated styloids can cause vascular restriction, I’d sure look there before considering “disease”. ES is a known for you. The possibility of “disease” can potentially be ruled out once the styloids are removed. Again, that is not to say you don’t have a secondary problem, just that ES is notorious for causing symptoms that mimic those of other health issues. Once ES is taken care of, often those “mimic” symptoms also go away.

[Gwendolyn]

Oh I wish I could give you a huge hug. Thank you. I need more imaging, and I agree 2 rare diagnoses are statistically improbable.

I have been telling my family that the chances of all these things being unrelated would be the likelihood of:

Me getting struck 2 times by lightning on two consecutive birthdays while doing the hula hoop on one leg jumping.

And I can not hula hoop.

Also Thank you! for telling me about the threads. I was going to ask for my stuff to be moved. The OP might also be new and possibly feel ignored or something.

Xoxo

“Gwendolyn”