Heading to my PCP today

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Going to see the PA in 4 hours. Hoping to get some sort of referal for a 3D CT scan. Been reading all the advocacy posts and trying to get a list of symptoms down.

I can feel a boney lump under my right tonsil with my tongue/finger. It feels sharp. Also i feel like my throat is more asymmetrical than it used to be and that my right tonsil is kind of being “pushed out” a little from the object beneath. If I open my mouth as wide as I can, I cant feel the lump through the tonsil any more and get some minor relief. I recall the shape of my right tonsil used to be more flat before I had these symptoms:

Feeling of a foreign object in throat
Painful swallowing
Often feelings of congestion on the right side
Pressure / fullness near right inner ear
Hoarseness - possibly from trying to clear my throat
Sometimes it feels like dry throat / needing to cough but water and coughing never seem to help.

I am not sure if these are related, but:

I feel like it is difficult to touch my back molars together on the left side and my jaw / face trembles a bit when I try to have an even bite. Feels like I am having to push my jaw really far to the left. But it looks symmetrical in the mirror. I had braces and my teeth line up pretty well, but ive gotten used to having my lower job off to the right all day.

My right shoulder / back / arm hurt with a dull ache all the time. It is intense enough i have a hard time sleeping or laying on my right side for more than a few minutes. It radiates all the way to the fingers and I am contantly trying to pop them as a result.

My right leg has similar aching pains and feelings of needing to pop my toes and ankle constantly.

I am 31 years old so I feel like the right side stuff could just be wear and tear and like old soccer injuries or tendonitis / tenis elbow? But also feels young for the whole right side of my body to be in constant pain. Makes me think it could be a nerve thing.

I dont want to over load the PA with every symptom I have that could be unrelated, but i want to be thorough.

I feel down a few times as a child/adolescent and had my neck get stuck to the side for a few days. Perhaps this trauma could have been related? I also had a wisdom tooth removed on the right side of my mouth around the time the symptoms started - i cant remember if it was before or after the extraction, though.

Even if my appointment has passed before i get a reply, I am curious if anyone thinks the pain on the right side of the body could be related.

Thanks for the support, all. Glad I found this community.

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Hi Kiriez,

I’m really sorry you didn’t get a reply before your appt.

These symptoms are all consistent w/ ES. The shoulder/upper back pain come from irritation to the accessory nerve by the styloid(s) & the other symptoms are caused by irritation to the glossopharyngeal, trigeminal & vagus nerves, most likely. These are nerves that are frequently victims of an elongated styloid(s). Your trigeminal nerve runs very close to both your upper & lower gum lines & can be impacted by tooth removal especially wisdom teeth as their roots go so deep & can actually tangle w/ the trigeminal nerve, too.

Regarding the lower body symptoms, it’s possible that those may be the result of your “stuck neck” injury when you were younger as that could have begun muscular compensations all the way down your spine which could be irritating nerves in your lower spine which innervate legs & feet. Another option is that your neck has lost it’s lordotic curve (we see many images on this forum where the neck vertebrae are straight when they should have a curve). That problem can also create nerve & muscle symptoms but is correctable w/ gentle exercises.

Here’s a good resource for ES symptoms which @Jules wrote:

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Sorry to not see this before your appointment, how did it go?

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Thanks for the information on the neck, back, and arm pain. I feel like it could very well be from pressure/damage on nerves in my neck, nice to get confirmation that it is quite possibly related.

The visit with the physicians assistant went to my liking. She was very direct and quick to recommend a CT scan. She believed my symptoms instead of dismissing them, and said she will take my word for it that you can feel a lump with your finger toward my tonsil and didnt need to feel it herself. Stark contrast to the dental hygenist 2 weeks ago feeling and telling me it is normal.

I explained it to her as feeling like a bone spur or calicified ligament or feeling like a tooth coming in but in the wrong place. She said based on the amount if time I’ve had the symptoms she can rule out a lot of things like an absess because I would have had fevers etc.

Im not sure she had ever heard of a condition like elongated styloid process or calcified ligaments in the head and I didn’t mention them by name and just described symptoms, but she seemed to understand what would be needed to get more answers, which was a great relief.

So she recommended CT scan and blood work in case I need a scan with contrast. She also went ahead and wrote me an ENT referal if I need it for after the CT scans. She said she was writing one for a different ENT than my PCP reccomended years ago because she seemed really concerned that they never put any of my ultrasound images into my records, and she couldnt understand why they (i forget the term) but put a camera up my nose to the back of my throat if the irritation was coming from around the tonsil area. I remember that ENT visit being frustrating so it was great hearing the PA be really confused as to what the ENT was thinking.

Anyways, she said she would recommend me to physical therapy for my shoulder/arm pain and said I could get an xray of my foot/ankle while getting my bloodwork done.

Either way I am most excited for the CT scan so I can have a better idea of what is causing my symptoms. It feels like it would be a relief to know what is wrong instead of just guessing.

Anyways, sorry if I jumped around a bit. No worries at all that you guys couldn’t get back to me before I went in. It was pretty short notice.

The list of symptoms and patient advocacy information was probably the most helpful resources that could have been handed to me, and I appreciate and respect all the good work that has been done on this site. There seem to be some of you, like Jules or yourself, that put a huge amount of work into helping equip others with the tools they need.

Working with the PA and understanding her job makes things flow so much better, similar to dining in a restaraunt and having been a server before yourself it can be easier to not be a hassle for your server. I figure most patients are probably not feeling good and difficult to deal with. Me being friendly and prepared was probably a breath of fresh air.

Also, the support is amazing. Knowing I can talk to others with similar synptoms or that persevered and were able to get treatment they needed is very comforting.

The PA said to let her know if I dont get a call within 2 weeks to set up an appointment for CT.

I’ll keep you posted. Let me know if I missed anything if you have any other questions or recommendations for me. :grin:

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Welcome to the forum …So glad you had a good appointment and the investigation has started. Hoping you find answers sooner rather than later.

And no doubt @Isaiah_40_31 and @Jules have patiently walked most of us through this process and we are so grateful.

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Your news about the appt w/ the PA is very encouraging, @Kiriez. Thank you so much for sharing it with us. You know we’re here for you if you have other questions as you await your CT scan & after you get it done. You should ask whomever orders the CT scan for you to please have the radiology clinic include some 3D images of the area from your styloids to your hyoid bone. Those will be helpful for you to better see what’s going on in your neck.

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And also ask for a disc of the scan. They should be able to give to you that day.

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Great that your appt went well & you can get a CT done :+1:

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@Jules @Kiriez
Firstly, I hope you do find resolution to all your symptoms :pray:
This is very interesting about the spinal accessory nerve. I have this symptom to and thought it was on related. Ironically, mine is also on the right side! It feels definitely like a nerve is not allowing my trapezius or scapula to work correctly. Does that sound like spinal accessory?

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Definitely could be related to your accessory nerve, @Psalm73_26. I had similar symptoms as well as achy collar bones. All that went away when my styloids were gone.

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I have a CT scan with contrast scheduled for monday at 9:30am. They said not to eat for 4 hours prior. The appointment should take less than an hour.

I am definitely going to ask for a digital copy of the scan on a usb drive.

Any advice or things to remember going into this?

Really excited to hopefully get some answers soon. Will be neat to look at my own scans and make a 3d image and share them with the community and see what I think about them.

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@Kiriez - The radiology tech may or may not tell you prior to the scan, but when the dye is injected into your arm, you will almost immediately feel like you have to urinate badly. Fortunately the sensation goes away fairly quickly. Forewarned is forearmed!

Usually they give you a CD of the scan. If you take your own usb drive, you may be able to get a digital copy, however, any doctor’s office you want to send the scan to will most likely require it on a CD.

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