New member in search of help

Hello. I am new to the forum. I’m sharing my story and would appreciate any insight.

My story starts in February 2020 when I returned home after spending 6 difficult weeks with my ill mother. I developed fever within hours and 2 days later felt two strong electric jolts between my right neck and shoulder. About a day later I started having severe pain on the right side of my neck, shoulder, ear, above the ear to the top of the head, and upper arm (all on the right side only). I couldn’t use or lift my right arm and could barely walk or function at all for weeks due to weakness. I also couldn’t lie down due to neck pain and was basically living in a lazy chair for two months. I had x-rays and MRI and was put on steroids, muscle relaxant, and lots of Advil, (some Gabapentin) and later on Doxycycline. The MRI showed some disc protrusions but didn’t show a pinched nerve or what could explain the condition. Blood tests were all normal, except for sediment that started at 107 and slowly went down to normal over 3 months, which was also the time it took me to recover.

In March 2020 I saw an ENT doctor for the persistent ear and throat pain. He did a videoscope and ordered carotid doppler test which was fine. He diagnosed me with LPR and put me on Omeprazole and low acid diet. Incidentally, last December I was also diagnosed with stomach ulcers and was put on higher dosage of Omeprazole.

Fast forward, I’ve been doing well and exercising a lot, but the pain in the throat and ear persists. Last week I had a video visit with another ENT doctor for a second opinion and he didn’t think the pain was caused by LPR. His diagnosis is either ES or chronic tonsillitis. Reading about these two conditions, I believe to could be ES. For next step, I made an appointment with Dr. Hackman, which is scheduled for the end of May.

I have the following questions.

  1. Could those electric jolts have been caused by ES? The MRI didn’t show a pinched nerve and I never got an explanation for the cause. I saw that the accessory nerve can be affected by ES and can explain the pain and the inability to lift my right arm.

  2. Since I don’t have a confirmed diagnosis of ES, I’m not sure whether to wait till the end of May to see Dr. Hackman, or try to see another ENT earlier. I’m attaching some x-ray and MRI images and would appreciate any feedback.

  3. How does a dentist identify ES? I had 3D images taken a few months ago. Can those images show the styloids?

Many thanks. This site has been super helpful.

Hi nnnia,

I’ve annotated a couple of your images to show you where your styloids are. Your right one is exceptionally thick & pointed and looks a bit long to me. Your left one is long & has quite an angle at the end closest to your hyoid bone. Both of your styloids are likely contributing to your symptoms based on how they look.

I would recommend asking to be put on a cancellation list for Dr. Hackman (if you haven’t asked already) to see if you can get in to see him sooner. There is no emergency per se, but it would be good for you to have an official diagnosis so you can move forward w/ treatment.

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Thank you, @Isaiah_40_31. This is very helpful.
I measured the styloids according to your markings and they are both about 33 mm.
This, along with my symptoms, convince me to wait to see Dr. Hackman. They already put me on the cancellation list.

Do you think Dr. Hackman will also want to see a CT scan with contrast? If so, I will try to get it ordered ahead of time in order to save time.

Looks like I’m here for the long ride. It helps to know what to expect.

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A CT w/o contrast is best for seeing the styloids & stylohyoid ligaments if they are calcified too. A CT w/ contrast is only necessary to diagnose if the styloids are causing vascular compression.

You will need to get a CT scan prior to seeing him in order for Dr. Hackman to officially diagnose you.

Glad you’re on the cancellation list nnnia!

Thank you @Isaiah_40_31

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Hi @nnnia,

I’m sorry to hear that you have symptoms too. To me it sounds like this could possibly also be caused by an eagle syndrome if the accessory nerve is affected. Your first two recordings are MRI images. As a layman, I cannot see any evidence of ES there. Bones cannot be recognized with it, or only poorly. The cranial nerves are also not very large, so that they usually cannot be displayed.
I hope the dear Isaiah doesn’t hold it against me if I contradict: I think the marked area on the MRI image belongs to the larynx (epiglottis). In my opinion, the marked area on the lateral x-ray is not a processus styloideus (SP), but belongs to the lower jaw. The bone around the joint is usually a little thicker there. In my opinion, the SP on the left side may be very weakly visible right next to it. You could have a panoramic x-ray taken to get slightly better images of the SP with a relatively low radiation dose. A CT would be the next option and necessary for reliable diagnoses, as Isaiah already wrote. I wish you all the best and good luck.

Hello @nnnia I’m new here also. I want to talk about more but for now I’d like to show you what I saw right off the bat. Maybe you have a salivary stone or something. Not to say that’s it but could be part of the problem. Attached is your pic, an example pic, my mri of epiglottis so you can see differences. Maybe if that is your epiglottis it’s swollen?? Just saying. I hope this helps and you find answers really soon.

Hi,

that’s a dental filling on @nnnia 's x-ray…

On your last picture that might be your Larynx (Epiglottis), too. I think it isn’t your styloid.

Thanks Dude!

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Hi TheDude,

I have no problem with you giving a different opinion. I’m not a doctor & can only do my best to guess at what I see in a given scan. You have a bit more experience than I do in these things so your opinions are definitely valuable.

The proof will be in an actual diagnostic CT scan which is looking at the styloids, hyoid & stylohyoid ligaments. Even radiologists have been known to misread CT scans. :joy:

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Thank you @TheDude and everyone.
If I can get a CT ordered before my appointment with Dr. Hackman, shall I ask for one with or without contrast? And is it a CT for the neck? or is it called something else?

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Hi nnnia,

You want a head & neck CT scan that cover the area from the base of your skull to & including your hyoid bone. The styloids & stylohyoid ligaments (if calcified) are best seen in a CT w/o contrast. A CT w/ contrast will additionally show soft tissues & is good if you think you have vascular compression caused by the styloids. The usual victims are the internal jugular vein or internal carotid artery. If you don’t have vascular symptoms then there is no need to have a CT w/ contrast.

Here is a post Jules wrote awhile ago that has good information regarding ES symptoms. It may help you decide which type of CT scan you should get.

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What a great compilation of symptoms by Jules.
This is all very resourceful.

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I visited my dentist and asked him to check a panorama image from two years ago that was taken by another dentist. The image was not clear and he offered to do another image for free. He was familiar with ES and showed great interest in examining the results. I attached an image of the right styloid where he marked and measured it. After seeing other images on this site, the styloid seems to me as quite thick close to the skull and a little long. Any thoughts? I’m still waiting to see Dr. Hackman at the end of this month.

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Hi nnnia,

Yes, your styloid looks a bit long, thick, fairly angled & pointed. The styloid does grow from the mastoid process of the skull so it is attached to the skull. Definitely sounds like ES to me but Dr. Hackman will make the decision when you see him. I’m glad your appointment is coming up.

This is great information! Thank you so much for this link. I learned a lot! Wow!

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