Ct Scan help please! Eagles Styloids causing my pain?

[MandS]

First I want to say “OMG”! I can’t believe what you all have gone through the suffering and pain! For years I’d pray that no one suffered like I did or any type pain, if they did please help them find a dr that could help them. And oh how I think about people without health insurance praying and hoping they can get help. I’m so so sorry you all have gone through this. It’s beyond a nightmare!!! - In 2003 I started having a metallic taste in my mouth and odd swelling. I’d have a burning nerve sensation in my right side of my mouth and neck at hyoid bone especially when bending over and certain laying and sitting positions. It began to start upon rising from bed and ease off when going to bed. (Now the pain inside my mouth lingers on till I finally go to sleep) Went to a dentist and tmj was the diagnosis and stuck for many years. A stigma that’s difficult to rid. It progressed to pain in my cheek, jaw, ear, mastoid, even side of head, tongue/throat/hyoid to sternomastoid neck pain with something getting infected causing more pain and swelling with redness inside my mouth and an awful odor from my breath smelling like gasoline. I’m very meticulous with hygiene. My tongue swells getting larger and very painful. Right side of mouth at tonsil area is so painful with redness at tonsil area that has been there since the beginning. I rinse with warm salt water to try to ease the burning sensation. Body aches and fatigue and all over malice that pain med and antibiotics would help to relieve. Dizziness and vertigo on occasions. I’ve had several MRIs ct scans X-rays and dental scans. The same radiologist has read all my ct scans saying all normal except neck changes?? I’ve done steroids shots and pills, pain pills, all sorts of medicine, physical therapy, clinch trays, etc anything and everything to make this better. Each year it gets worse and worse with no help except more pills. I’ve had biopsy of tongue that came back chronic infection and was told I was probably biting my tongue?! The place biopsied was in the back right side of my tongue at tonsil area. Years before I had a perfectly good tooth removed that was the right top back because of nerve pain hoping it would help, So biting my tongue would be difficult in that area. I honestly believe that my muscles and ligaments in this area are calcified and obviously my salivary glands are affected by swelling reeking more havoc. I can see a thin long muscle in the front of my neck that is red. I have read a lot in this site! You guys are awesome helping others to get answers and relief!oh how I wished I’d found this sooner. I look at my scans a lot! following the areas of my pain for years seeing something isn’t right. I believe my styloids are contributing if not the cause of of my suffering. They don’t seem to look all that long as compared to others I’ve seen in this site but they are thicker wider and slanted in towards my throat. I’ve told drs this for years and they’d give me a look like you’re a nut. That’s how I got my user name. I’m hoping I can send my 3D pictures and ct pics for you all to look at. Please please let me know your thoughts. I know you’re not a dr but I do think because of the experiences you have gone through and how you have looked at your own scans and others that you can see if my styloids and/or ligaments and muscles and such could be Eagles Syndrome and/or vascular eagles syndrome. I also think there is something on the right side behind the middle of my sternomastoid that doesn’t look right, it looks like a nodule of sorts. Could someone let know if yours has this please? Please let me know if I can send the pics and how to do it.

[MandS]

Isiah 40-31, I told you or Jules about the finger like thing in my neck that an oral dr said was my styloid process. He quickly changed to another subject regarding my salivary glands. Attached is
The pics of that. One is mri view and other is 3D view. It looks like it is right where the most extreme pain I have is, in the hyoid carotid area. I figured out how to add pictures so hope it was ok to add in last post.

[MandS]

Oh and I added a pic that looks like ligaments or muscles that could be calcified

[Jules]

I do agree that the styloids look a little long, but definitely wide & angled as you say. I don’t know enough to comment on calcified muscles though, I’m sorry…If you can get a referral to a doctor with experience, or see if you could send them to someone to review, I think that would be your best bet. Have you had a look at the Doctors list; what about Dr Hackman? I’d also suggest if you do get to see someone experienced that you as them to look at your hyoid bone processes to see if they’re elongated too.
Quite a few members have had salivary gland issues too- I had a stone & when I went for tests for that I got my ES diagnosis- if you’re having lots of trouble with that it might be an idea to look online for how to massage them which can help if you’ve not done that already?
Hope that you can get some help soon!

[MandS]

Thanks Jules. How long is considered long for styloids? Like left measure 2.72 and the right was
Shorter at 2.23. When I measured what looked like the styloids in a sinus ct scan they were longer but I don’t know where to begin. I’m attaching these also. Honestly Jules this is been such a struggle for me with drs. They have never mentioned Eagles which is hard to believe because of the pain having. Why do they not know about this? I see the oral surgeon in may for biopsies of salary glands in my mouth. I will definitely ask a lot more about my styloids. When he looked at the picture he asked if the radiologist mentioned it. I said no. All drs go by what the radiologist say. So I need to ask the dr to have the radiologist to specifically look at my styloids and ligaments and hyoid bone?

[Jules]

If you can get the CT images re-evaluated for ES that would be good, some members have got back in touch with the office of where they had the CT done to ask, otherwise it would be an idea to ask the doctor who you’re seeing next if they could get it re-examined.
I wouldn’t worry about trying to measure them yourself- it’s quite difficult & even the radiologists can’t measure them accurately at times; there is a research paper which mentions that it’s because of the medium used that they can’t be accurate. Also some of the research papers in the Newbies Guide Section mention that the angle of the styloids can cause symptoms too.

[MandS]

Thx Jules. Gonna ask the oral surgeon when I see him. The place I had the scans and the ent were not very helpful. I don’t understand why they would say neck changes and not say what it is that’s changing. I’ve had so many scans in the past I’m afraid to be radiated yet again although if I have to I will. The sternomastoid muscle on the right is so much bigger than the left. Is this what other Eagles members have? Is this a normal thing? To have one side larger than the other?

[Isaiah_40_31]

Hi Medrudumme,

Your right styloid is very thick at the top & really, overall thicker than normal. Your left styloid does look a bit elongated to me. We have noted that it’s not always the length but also the thickness, angle, how twisted or pointed the styloids are that can cause symptoms. We have had members who had a swollen/enlarged SCM muscle in their necks from ES. I believe, in at least some cases, that resolved after the styloid on that side was removed. As Jules noted we’ve had quite a few members w/ salivary stones & even tonsil stones. Not sure they’re related to ES but there is some possibility as it all involves calcium being accumulated where it’s not needed.

Your time & money will best be spent on a doctor who is familiar w/ ES. If you’re able to travel to see Dr. Hackman, I think his opinion will be valuable for you.

[Jules]

Members have certainly had issues with the sternomastoid muscle- you can use the search function to look for previous discussions.