New here, Glad I found you!

New user here. Glad I found this page! I am a 51 year old male living in Southern California (San Diego area) and I wanted to introduce myself. I have been lurking the message board for a few weeks before finally deciding to sign up. Lots of good info here.

How I got here…. I thought the story starts (as I read more on this site I realize I have been having other symptoms for years…more on that at the end) around October of 2019 when I started to notice tinnitus and some hearing loss. My tinnitus is not ringing, but buzzing almost like the sound from a transformer. I noticed that I could change the tone and volume with jaw movement. At one of my hockey games, my helmet slipped and I shook my head to get the helmet on correctly and had ringing in my right ear. Fast forward to January of 2020…Went to the ENT and was given a hearing test that showed mild to moderate at high frequencies. ENT was unconcerned that my jaw movements could change the tone and volume of the tinnitus.

Some time in March 2021, I began noticing fullness in my ears and while clearing helped, the fullness would return in moments.Also having a massive increase in tinnitus. Saw a PA in the ENT’s office on April 20th and from his exam he could see that I was not fully clearing my ears. Also during the exam there was popping and clicking of my jaw when I would open and close. PA felt that my ear pressure issues could be allergies and put me on flonase. He also recommended that I see a Dentist who specializes in TMJ issues. I had pretty bad TMJ in my late teens, but I felt that had resolved (or i just learned to deal with it).

A week later I saw the TMJ doc who noted that I do indeed have bite issues; he also saw rather large styloids in the X-Rays he took and referred me to get a Cone Beam CT. CT revealed elongated styloids. Usually you get no information out of the techs, but he was so excited about seeing the biggest styloids he has seen that he cleaned up the image and converted it to 3-D to show me.

Started stalking this page and found the list of doctors who are familiar with and treat ES. Found the only Doc in San Diego on the list (Dr. Brendan Gaylis), unfortunately he is at Scripps and they suffered a ransomware attack. Scripps has been unable to make any appointments since May 1st when the system was taken offline. I hope to be able to get in and see him when they start taking appointments.

Due to the fact Scripps is not able to set up new patient visits, I went back to my ENT (not the PA). He confirmed the CT did in fact show ES. He recommended that I get an MRI to see what has been impacted by the styloids and prescribed a diuretic to see if it helps with the tinnitus and ear fullness. Got an appointment for the MRI next week and will follow up with the audiologist and doc mid June.

After my reading here and other research other symptoms that I have had over the years that I think could be related to ES are:

  • I constantly feel like there is something in my throat that I have to clear.
  • Lots of times when I think I have a sinus or dental issue the doctor will not find a sinus infection and send me to the dentist. The dentist then finds no dental issue (also happens the other way around).
  • High cervical neck issues thought it was related to years of playing hockey, but now not too sure. My neck can go out from towel drying my hair.
  • Feeling lightheaded on long drives.
  • Odd headaches at the base of my skull.
  • Pain in upper neck/jaw when stretching.

Thanks for reading my rambling!

1 Like

BB16,

Thank you for sharing your story. All the symptoms in your list at the end of your post are things that have been noted w/ ES. The neck instability may or may not be caused by ES or perhaps it was partial contributor to you getting ES. It’s unclear which way the ball rolls sometimes.

If you’d like to read some comments made about Dr. Gaylis by forum members who’ve seen him, click on the magnifying glass icon above & type his name in the search box. Posts where he is mentioned will come up. I hope you’re able to get an appointment soon.

Cyber attacks are terrible things especially when targeted at the medical system. My daughter is a nurse in a tiny town in Wyoming, & the hospital there was hit the same way last year. Very pathetic.

1 Like

Hi @BB16

How you described your tinnitus looks similar to mine (as the sound of a transformer)…

I also describe mine as the water-jet-like sound from a tightly squeezed water hose. Internal feeling is like some muscle(s) being over-stretched and desperately trying to stay untorn… In my case I also have some hearing loss, however it feels that I cannot hear some frequencies because the tinnitus itself is too loud and masks the tones, not vice versa (though certainly I might be wrong).
Sometimes in the morning, when my body is less stiff and tense, I wake up with significantly less noticeable tinnitus and better hearing (my alarm clock is in the radio). Then if I don’t do anything, it stays like that. But it’s enough to activate any neck muscles trying to lift my head off the pillow, and the tinnitus hits me even before physically lifting the head up.

I wonder if yours is the same too?

I think initially the tinnitus would come and go, but now it is 24/7.

I’m glad that you’ve shared your story, & hope that you can get an appt soon!

I live in San Diego county and also use Scripps. My neurologist (a Scripps doctor) referred me to Dr Samji (ENT) in San Jose. I was very pleased with my surgery. I was not aware that they had a ENT that worked with ES in San Diego. Dr. Samji has done over 450 of these surgeries and has a great reputation. Good luck with during with ES. Sending you lots of positive vibes a d prayers.

1 Like

HI BB!
I have attached an article on TMJ and Eagles. I had tmj issues early in my life as well and I think I just learned to live with it and ignore the problems for many years. I have alot of the same symptoms as you for years probably stemming from a couple whiplash accidents in my late teens.I dont have the tinnitus like you.
I would suggest that you have a doctor order a CT Scan without contrast of your neck (an MRI is for soft tissue and will not show styloids to the degree needed) with the order specifying evaluation for Eagles. This will give you a head start while waiting to see an ENT who has knowledge of Eagles. I live in Seattle and sent my disk to Dr. Samji who read it within 10 days and scheduled a consult (if he feels you are a good candidate for surgery) within a couple weeks. He does do video consults. There are a couple other docs in the SF area as well but take longer to get into.
As the patient, you can request the radiology report for the cone beam CT scan to see what it says but usually cone beam CT dont concentrate on the neck area (or measure the styloids) and docs want to see a regular CT.
I have had neck instability for years and seek alot of chiropractic care to get my neck back in alignment. I also have ehlers-danlos syndrome-hypermobility that has contributed to this instability.
I started having shooting pain from my neck area (felt like bone in my throat) up to my ear in 2015. These were pretty extreme pain flairs. It switched to the other side also. I saw several docs and went to pain centers for injections. Long story short, a new neurologist mentioned eagles in Dec 2019, I found this blog, got the CT scan which confirmed the Eagles and had Dr. Samji confirm it within 21 days. I had surgery in April and Dec 2020. The 1st surgery kicked up the TMJ, the 2nd did not.

Right before my 2nd eagles, I saw a really good TMJ specialist who did the cone beam CT and told me I had significant osteoarthritis in my jaw which was causing jaw alignment and putting pressure on trigeminal nerve causing severe pain in my temples. I just got an appliance to realign my jaw last week.

My point being, is that you can have multiple issues at once and it is a journey to figure it all out and to get out of pain. I suggest seeking out a really experienced TMJ specialist and to look beyond your regular dentist for more advanced care for TMJ issues.
Sorry I dont mean to ramble either but I hope some of my sharing helps you on your journey.

1-s2.0-S221026121500382X-main.pdf (705.7 KB)
m glad you found us.

3 Likes

This was from the Cone Beam.

Those look pretty narly! Has there been a measurements thrown around on the length of those spikes?

What are the structures on the outsides of the styloids? I’ve seen them in other scans but usually those are the same length and I’m seeing that yours are not so I’m just curious if you know what that is.

I agree though your styloids look pretty long.

Unfortunately, my copy of the scans is a read-only format. I can’t get the tools to work, the tech said they are longer than 40 mm. As far as the object on the sides, I believe it is my mandible that wasn’t fully cut away for the 3D image.

That’s a beautiful image! Not only are they long, but your right styloid has a little curve on the end that could be causing some extra trouble on that side.

It is true, however, that whomever you consult for ES will want a CT scan with a radiology report to make an official diagnosis. Many doctors will re-measure the styloids from the CT scan as radiologists often get a different measurement than the doctors.

Thanks everyone for their replies. This site is such a wealth of information.

Quick update… Scripps health is now back up and running and I have an appointment with Dr. Gaylis next week on the 2nd. Since most docs don’t want to see a CBCT and want just a regular CT with a radiologist report, my ENT has ordered one and I am now waiting on the imaging place to call to set up an appointment. I will ask the imaging place for two CD’s and send one and the report to Dr. Samji for another opinion.

2 Likes

@BB16 - Please also ask them for some 3D images on your CDs. That will help you to see what the CT slices are showing.

1 Like

Woo hoo! Your on it BB :partying_face: Congrats on the progress.

2 Likes

Please let me know how your visit goes with Dr. Gaylis. I am interested to hear if he does ES Surgery. I may need to get my left side done and it would be a lot easier to have it done in San Diego than San Jose. Dr Samji is an amazing doctor and has a lot of experience with ES surgery.? But San Jose is so far away.

Well, the appointment with Dr. Gaylis was a bit disappointing, He did confirm ES based on the CBCT images and ordered a CT. He stated he is no expert on ES and suggested that I have a consult with Dr. Samji to see what he thinks. Dr. Gaylis was very nice and said he has only done “a few” styloidectomies. It’s just a bummer because I was hoping to find someone nearby.

The journey continues,

Sorry to hear that but the good news is Dr. Samji is excellent at what he does. I would definitely do a video conference with he and get his feed I rented an Airbnb and stayed there for a week. I wish you all the very best.
PS. I’m also a Scripps patient.

2 Likes

Such a shame, but at least he was nice & honest…

Yes and he never once was dimensive of Eagle Syndrome. I left feeling heard, just not helped.

2 Likes