New to the group, introducing myself and hope to get some help identifying if I possibly have es

[Dannyh14]

Hey my names Danny, I’m a 27 year old male from the east coast of the United States. A little bit about me. I am a diesel mechanic. Have a passion for working on vehicles being with my family and having an abundance of animals( 2 cats, 1 dog, 4 rabbits, 3 goats 2 mini horses, and a full-sized horse) I’m also a new ish dad. My little girl just turned one a few days ago.

I’ll start from the beginning. Last November me and my girlfriend were driving about 3 hours away from home for a horse convention. Everything was just a normal day unti we were on our way home. We pulled over to grab a few snacks and switch seats so she drove the rest of the way home. I had fallen asleep for maybe about 30 minutes or so. I won’t up to my ear drum on the ride side was feeling like it would Tense up real quick then release. Didn’t really bother me just found it odd.( I do already have ear problems and just figured I was just over tired) made it back home everything was fine, went to bed. The next the a few hours into the day my ear drum did it again but it was on the left and a little more pronounced. Again thought nothing of it and went on with my day. So that was day 2 on day 3 I went to work as usual was fine all day. Then came home jumped in the shower, about half way threw I noticed my ears felt full one after the other. It was very weird. At first I thought I had water in them but no mater what I did it would not go away. I came out of the shower and was holding my daughter on the couch with my head tilted on the arm rest. Not even 5 minutes and my normal tinnitus( self inflicted) sky rocketed to 10/10. This lasted for about 2 weeks. Then I made an a point meant moth my pcp. She diagnosed me with ETD. Went back and forth for 3 months with my doctor trying to figure something out. In that time I had a few more symptoms show up.(I’ll list all my symptoms down below) made an appointment with an ent but that was 3 months out. So ended up talking to my dentist and had regular X-rays done and a cleaning. She stated my bite looked good. Slight over bite very minor. And have full range of motion in my jaw. Ended up getting a night guard. The night guard did nothing for me if anything it made it worse. I ended up going to a rmk specialist who took a panoramic X-ray, he felt my jaw said I had tense neck muscles. He ended up giving me a quick split and said if I didn’t feel better then i would need pt. So tried the splint for a week. Still no change. The specialist had called me by the end of the first week and asked if it was any better. After telling him it felt the same he suggested his pt dr. I opted out because I didn’t have anymore money to spend on something that I don’t even have a clear diagnosis on. Went back to my pcp still waiting for my ent appointment. She gave me prednisone and after a few days I was finally able to some what release pressure from my ears. A few weeks went by still had all sorts of problems. Saw the ent. Ended up with a tiny cut in the worse side and felt a lot of the pressure disappear but was still in pain. At the following appointment I discussed with him that I was also getting this weird sinus pressure issue and my nose would get stuffed up randomly durning the day. It was never on both sides but either one side or the other. Went and did a nasal rinse with steroids for about a month. Seamed to help the fullness for a bit then slowly got worse again. And that brings me to here. I have another appointment with the ent again in august and am just trying to figure out what is going on. Any help or suggestions would be appreciated. I know people on here are not doctors but you guys know way more about this then I do. I’ll list all the symptoms in order Spence I got them and a close up of my panoramic X-ray that I had received today after calling the specialist.

Ear drum tensed
Ear fullness
Loud tinnitus
Jaw pain
Ear pain
Tense neck
Numbness under ear/jaw
Random muscle spasms on temple, neck, lips
Intermittent sharp pain by tonsil area on left side when swallowing or burping. Doesn’t happen all the time
Feels better when eating
Sinus pressure/ stuffy ness
Pressure around eyes
Blurry vision
When waking up I sometimes get like these weird spikes like something pulses in my head
Can feel/ hear my heart beat when laying down on a pillow
Random tooth pain on the left side

Here are both right and left panoramic

[Isaiah_40_31]

Welcome to our forum @Dannyh14! You certainly have busy life with all those animals & now a baby! Congratulations on being a dad, but I’m sorry you’re feeling so awful!

I couldn’t really see a styloid on the left side (maybe someone else can), but your right styloid looks elongated & curvy which could definitely bring it into contact w/ nerves & possibly vascular tissues like your internal jugular vein (IJV). To me your symptoms sound like those of vascular ES w/ IJV compression. The best way to get diagnosed is to have a dynamic CT scan with contrast. Dynamic means the CT scan is taken with your head in several different positions not just lying on your back. Vascular compression often doesn’t show up when the head is in neutral but turned left or right, up or down, it becomes obvious thus the need for a dynamic scan.

An ENT is the type of doctor to see for this, & you mentioned you’re still waiting for your appt. If your ENT doesn’t know about ES, ask for a referral to someone who knows about it. If you can’t find an ENT near you who can help you, Dr. Annino in Boston is very knowledgeable & has helped a number of our members, & Dr. Costantino in NY specializes in vascular ES. I realize that traveling outside of your state may not be an option for you, but many of our members have had to do that to see a specialist for ES. It’s imperative that you see a doctor who is experienced with ES surgery, & if you do have vascular ES, a surgeon who is experienced with vascular decompression as well as doing styloidectomies so you can get the best results from surgery.

[vdm]

It feels that the segments of the calcified stylohyoid ligament are correctly highlighted in both pictures, otherwise the styloid processes themselves in my non-professional opinion aren’t visible on the x-ray. The right side stylohyoid ligament seems to be calcified in segments, so perhaps it was broken during your road trip? I only can speculate that when the neck is relaxed while asleep, any road bump might give the head/neck some overstretch in that area, but it could simply be natural way how it ossifies, segment by segment.

It might or might not be the cause of the symptoms, hard to say. It doesn’t look like very obvious case.

[Blessu2]

Hi!
Welcome. If you have vascular ES please be very careful. Research states that stress can increase the risk of Strokes, therefore stress management is crucial to the avoidance of exacerbated symptoms.

On the sunny side of life, you are not alone in the exhausted finances department. ES though common to this group is like COVID to the world (without being contagious). Lots of symptoms, lots of unknown, and lots of fluctuating professional opinions.

To help reduce financial stress, anxiety and frustration,
Consider pacing yourself by doing your own research; using your unique or common symptoms as your guide. Be very adhement with the doctors that you see and the support that you need.

You are amongst believers, fighters, warriors, overcomers,.

PENTA in W-S NC Dr. J. Willis was one of my surgeons.
I had vascular ES. and I chose to have external surgery.
( I love my survival scar)

#prayingforusALL.

[Isaiah_40_31]

Potential strokes are more commonly seen with internal carotid artery compression/irritation but your warning is important @Blessu2 since @Dannyh14 doesn’t yet know what his diagnosis is.

[Blessu2]

I apologize if I provided incorrect information. It was in research article about ES and ischemic strokes that I honestly may have misread😳.
My response was honestly meant to encourage our newcomer to do what it takes not to stress.

Again I sincerely apologize.

[Isaiah_40_31]

No need to apologize, @Blessu2 . It is a good warning especially since @Dannyh14 possibly has vascular symptoms.

[Blessu2]

I honestly don’t know what I would have done without the insight from you and Jules. The encouragement and prayers were and are priceless.

[Isaiah_40_31]

I’m glad we were able to support you when you most needed it @Blessu2! We were both well supported by moderators & members on this forum in the past when we were learning about ES & considering surgeries so we’re very grateful to be able to give back now.

[Jules]

I wouldn’t have had surgery if I hadn’t found out about a surgeon on this site, just paying it back, but thanks

[lilwider]

I second this! I am so lucky I found this group