Eagles syndrome the cause? Long road need help with images and confirmation

[Eagle11]

Hi!

Thank you so much it has been a long road of seeing multiple doctors and symptom treatments that left me confused and frustrated. I have a consult with Dr. Samji on may 8th who reviewed my scans and said I am approved for consult but borderline candidate. He did not give me measurements and also I had trouble requesting these scans since most doctors refuse. The radiologist said mildly elongated in the report but didn’t give measurements and claimed it’s “normal” . My cone beam scan from my TMJ doctor was where I noticed the elongation.

My symptoms are ear fullness, ear ringing, pain behind and above the right eye causing my eye to droop intermittently, feeling a prick pain in my throat right side, severe headaches and fatigue, neck pain and neck muscle stiffness, right side jaw pain, pain behind right ear feels like there is a tight ball there.

Last August I had a thyroid ultrasound on right side where they found a suspicious thyroid nodule and I was overly stressed about it because I was scared and had to the biopsy. Thankfully it was benign but three weeks after is when symptoms started. My neck cracked a couple times and severe headache came on with eye fullness and eye droop that caused me to go to the ER since it was a week and no meds would help. The er had no answer except diagnosing with hemicrania continuum migraines and was given indomethacin. That was numbing the pain but so many side effects I couldn’t tolerate and had to take a very high dose so stopped that. Checked my sinuses - that was clear. Checked blood work- no autoimmune showed up or anything out of the ordinary. Tried acupuncture, massage therapy, meditation, upper cervical chiropractor and regular chiropractor. also tried physical therapy- which caused me to get more inflamed after each session.

I had terrible TMJ pain so tried pursuing that route and was charged $7000 for a treatment that didn’t work- orthotic, tens unit , regular adjustments and PT. Did the cone beam scan with him which I will attach here and show you what I seen. The ct with contrast didn’t even show if it’s pushing on any nerves. I would like to attach pictures to forum if I can figure out how to do that as it’s not still images maybe I’ll do screen shots. I also have terrible occipital pain, check muscles and ligaments under jaw are so sore and stiff. I forgot to mention the nagging right eye twitch that’s been going on over a year that causes intermittent slight right eye ptosis , as well as cheek sinus pressure /pain and facial pain/ heaviness, and heaviness over right eye.

A few of my scans are posted here. When I have time I’ll post my MRI and CT and all this info to the forum. Let me know what you think and if Dr Samji is a good choice.

I also wanted help to see if someone can look at my scans and help create 3d rendering or help with measurements

Thanks

[Isaiah_40_31]

@Eagle11 -

Good job getting your scans posted. Our system doesn’t let new members upload images until they’ve posted at least once so the PM you sent me must have counted.

I’ve annotated your styloids using the bottom image. I can’t really tell what I’m seeing in the top two pictures.

I have concerns that the way your right eye is being affected may mean you have some internal carotid artery compression being caused by your styloid, other symptoms including headache, fatigue & tinnitus also point to possible vascular compression. Your other symptoms are mostly nerve related including the sinus issues. & are common with ES. Many of our members including myself have thyroid nodules or other thyroid problems. We’re not sure why that is, but it seems to go along w/ ES for some people.

Dr. Samji did my ES surgeries & I had good outcomes, but there is a doctor much closer to you who is also very experienced w/ ES surgery & who, I believe, will cut your styloid shorter than Dr. Samji does. That is Dr. Cognetti in Philadelphia. He also does telehealth consults so would be worth contacting. We’ve had a couple of members who recently had surgery done by Dr. Cognetti & who have given him great reviews.

Please remember that styloid length isn’t necessarily the key factor in the styloids causing symptoms. The angle of growth, how thick, pointed, twisted or curved they are can play a bigger role than length. Both of yours look very angled inward to me with the right one being shorter than the left but more angled. The angle could be your bigger issue. It will be interesting to see what Dr. Samji says.

You have noted what many of our members have learned & that is that PT & chiropractic care when you have elongated styloids, can do more harm than good. Even post op, high velocity neck adjustments are not recommended ever again, though PT can be helpful. I’m sorry for the money you spent on TMJD appliances & treatment. We also have many other members who’ve been misdiagnosed & have gone that route because some ES symptoms do mimic those of TMJD.

I can’t help you with converting your images to 3D but perhaps others on here can.