New Here- NYC Frustrated no diagnosis, but acknowledgement

Hi. I have been suffering with this since December 2019, maybe longer. Still no real diagnosis.
In December 2019, I felt like something was stuck in my throat. I thought I was just getting a cold. I then had sinus pressure and pain as well as unspecified tooth pain. Then one day in January, I woke up with incredible brain fog. I thought I was coming down with something. The brain fog did not go away. I began really clenching my teeth at night and my digestion was getting worse. I became so tired and dizzy. I then began to get earache on my right side. I finally went to the doctor in March. He told me it was anxiety and offered me medication. I told him, that I was not anxious or stressed. A week later I almost passed out and went to the Emergency Room. They did all tests on me, which came back normal, and said it was anxiety. I told them that I had facial pain and tooth pain. They dismissed it. In February, I had a root canal done on one tooth. It did not need a root canal. I had a root canal done on another tooth in April. Still no improvement. Dentists and Oral surgeons told me that I was fine, that there was nothing wrong with my teeth. Unfortunately, I saw an Endodontist who probably shouldn’t have done the Root Canals. Finally, I was able to see an ENT, he thought I had a sinus infection based on my symptoms. The CT scan showed no sinus issues. At this time my symptoms were full blown, ear pain, burning tongue, burning pain in palate and tonsil area and brain fog fatigue. Saw another ENT, he said nothing was wrong, but phantom pain. In July I had Brain MRI, Neck MRI, both normal. I started researching my symptoms and saw TMJ so I had a TMJ MRI, it was normal.
At this point nobody believes me, everyone thinks I am losing my mind. In October went to see a Endocrinologist and Infectious disease doctor. Nothing wrong. I didn’t have covid, checked for antibodies and was tested multiple times. In January went to see a new ENT, first visit he said that everyone has strange pains. I went back again in March and suggested Eagle Syndrome after reading about it… He did Head and neck CT looking for Eagle Syndrome. The scan came back showing" bi-lateral slightly elongated styloids and partially mineralized styloid ligaments. I thought we found the issue. I saw 2 specialists who have done this surgery.
The first one said that it was highly unlikely that this was causing my symptoms. He said it might be silent reflux and put me on PPI, which I stopped after 2 weeks, it did not help. The other one said that he did not believe it was my styloids or the ligaments that were causing the pain. But he did think it was something in the area. He said perhaps my C1 transverse process or my Hyoid bone. He felt that they were also misshapen. If that were the case I thought, wouldn’t this have been noticed a long time ago?
So, this doctor suggested doing an exploratory surgery, but was unsure weather it would make a difference, he also said that it is a very risky surgery, he would do it through my neck. I am looking for anyone who may have had similar experiences.

I am trying to post 3D pictures, but



Please feel free to comment on the pictures. I really would like to know what people think. I am unsure weather to do the exploratory surgery, and would like to get an opinion on what people think about my styloids and calcified ligaments, and their experiences.

Thank you very much.

Picture from non contrast ct in 2020
Ant thoughts would be appreciated

Obviously we’re not doctors on here, so can only give you an amateur opinion!
It certainly looks as if the right side is a bit long, & then there’s a gap & more calcification, presumably the stylo-hyoid ligament has calcified. The left side looks shorter, & I can’t see any calcified ligament on those images…but on the first image you’ve posted it looks wide & a funny angle. It’s not always the length which can cause symptoms but also the angle, & the gap between the styloid & the cervical vertebral processes. I can’t comment about the hyoid bone, as it can’t be seen on these images, but we have had members who’ve had the stylo-hyoid ligament calcify from the hyoid up, & also who’ve had elongated hyoid processes, although it’s not that common.
Your symptoms certainly sound as if they could be from ES, & it sounds as though it could be vascular, as you have dizziness, brain fog & have passed out. Unfortunately no-one can say for definite which symptoms can be resolved with surgery, it’s very much a wait & see thing. If you see an experienced surgeon, & they remove as much of the styloid as possible, smooth the tip & also remove any calcified parts of the ligament, then generally surgery has good results. It sounds as if your doctor would do external surgery, which is good as this gives better vision of all the structures. If you’re considering surgery, I would find out how many he’s done, whether he’d remove the calcified part of the ligament too, & what exactly he’d do during the exploratory surgery- you don’t want to have to go back again if nothing’s removed. And I’d also suggest getting clarity on what’s the issue with the hyoid & C1 process.
Have you looked at the Doctors List? Here’s a link in case you haven’t:
US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
Not sure who you’ve seen, but Dr DeLacure is experienced, otherwise if you can travel, Dr Cognetti & Dr Newman in PA have done lots of surgeries too.
Hope this helps!

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I fully agree with Jules and have nothing to add. Wishing you to see a real specialist quickly, @Taylor.

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Thank you, Jules and The Dude,

I have actually seen 2 specialists, Dr Tassler and Dr. Delacure. I personally liked them both very much. They answered my questions and spent quite a bit of time with me. Dr. Tassler told me that this did not qualify as ES. He suggested that it might be silent reflux and offered PPI’s. He said that he would not do surgery as he felt it would not help me. Dr Delacure also said that this is not a typical ES. He felt that it was more likely my transverse process, hyoid one and calcified ligament possibly conspiring to cause symptoms.
He said that he would do an exploratory surgery with neurosurgeon, but he was not convinced that this was the cause of my symptoms. This is why I am so frustrated. I want to feel like a surgeon is confident with a possible cause of symptoms before going in there, even if there is a possibility that it may not alleviate them.

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If you are clenching your teeth at night you could be developing TMJ. TMJ can aggravate the trigeminal nerve which can cause tooth pain. I know this is not a easy journey, mine took 5 year and now 9 years to get diagnosed.

I agree, it is frustrating… Dr DeLacure has done quite a few surgeries so is experienced. It’s hard to give advice; surgery is a personal decision even with a definite diagnosis, you can’t ever be sure that it will resolve all symptoms, it’s always a balance between the risks of surgery & how your quality of life is affected.

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Hi I have calcification on the styloids
I take 10 -20 mg of indep 10 a day to help with nerve pain ,
Just for couple of weeks try to eat soft food , no yelling , no crying ,dont talk to o much ,

Slow rotations for left to right 10times 3times a day
Basically trying to let your neck muscles relax

And feeling of something stuck in throat might begin to go

2 other thing I do
When sneezing continue to blow air out for couple of seconds after sneez helps muscle from tighting up

And don’t turn head when yawning

Hope these little tricks help a bit

Thanks, Trevor, that is sound advice.
I have found that laying on my back seems to settle it down a bit. Maybe a different angle or the ligament may shift. I have tried soft foods, not talking, etc. Sometimes it settles it down a little bit. Out if nowhere pain and numbness comes back strong at times. I actually had a root canaled molar pulled in November, ENT thinking that was the issue. It wasn’t. I hope you are feeling well today.

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