Please help - suspected Eagle's

Let’s be honest, even a day is a long time for someone with anxiety! But hey - at least this time they sent me to a specialist, I could’ve been brushed off again. Just have to pray the ENT believes me now!
I just skimmed through the thread you mentioned and I’ve heard of a few of the mentioned disorders, I shall NOT google the unheard ones though, I know where that’s gotten me in the past haha. But again, many of those you could probably suspect if you have either vague or specific pains and whatnot, which I don’t have much of. My main concern is that darn pointy lump, all at the moment I can do is wait for my appointment and pray it’s not deadly in any way.
Yes ES itself would be much rarer. But I think most people in this thread have concluded that I most likely don’t have that, but quite possibly an elongation instead. Which, again, I really do prefer over something a bit more sinister!

.4% x .4% = .16% which is the same as .16/100 or 16 out of 10,000 people have a long / angeled styloid process enough to cause some of the symptoms of the long list of potential symptoms causing pain or vascular issues or both which is why it is on the United States Rare and Genetic Disorder Website. Yah - we are special!

Hello everyone, haven’t updated in a while! I am finally going to see the doctor tomorrow - my first appointment got canceled before it even got confirmed, but luckily my re-booking was for only two weeks later. So I am taking all of my previous printouts that I took to my GP - articles, images etc. - do you have any last minute advice? Like, what should I ask, what’s the most specific test you suggest, what to avoid etc. I know you guys have given me a LOT of valuable info here, but I don’t have enough time or mental strength to go through it all thoroughly, let’s just say my health anxiety is at quite a high at the moment haha! Thanks again for all the help!

Here are a couple of Q’s to ask, if the doctor says they want to do the surgery:

  1. Ask if s/he plans an internal or External surgery approach?
  2. How much bone s/he “Plans” to remove ?
  3. Do they use nerve sensors?

I hope this appointment gets you on the road to recovery

For diagnosis, a CT is the best scan, and ideally if you can get a CT with contrast, then that will show any compression of blood vessels. And if they agree to that, ask that the radiographer specifically reviews it to measure the styloid processes and to look for any calcification of the ligaments.
Hopefully you can get this and it’ll put your mind at rest that it is a styloid process you can feel and nothing nastier…
Best wishes, and hope that it goes well!

Well let’s hope it doesn’t get to the point of surgery or anything that has to cut into me! Well it hasn’t grown in all this time (knock on wood) so let’s hope it’s not something nasty, it’s already caused me distress as it is. Jules, if for some reason they refuse a CT scan specifically, is there any alternative way?

A panoramic x-ray can show the styloids quite well- that’s how they saw mine, so easier to get done than a CT. The first doctor I saw felt them as well- pretty painful though.

Should’ve posted an update a bit sooner but I had quite a busy work week! Anyway - I was under the impression I would actually see the consultant I was referred to but I was seen by another person who works for the actual consultant? Which I think is a very strange system and I pointed that out to the nurse after I was seen. I once again felt brushed off, as they couldn’t feel anything from the outside - again, because simply grazing the skin will surely do the trick. They didn’t even palpate my tonsil from the inside like I said - even when a GP did, and they are so so SO reluctant to do anything like that! All they did was shine a light around my throat - not very helpful when there’s nothing to see. And I think I irritated the doctor when I said I spoke about this with people on the internet - is it just me or do doctors think that all people on the internet just outright lie about their health issues? Anyway I said what I ideally needed to get this sorted, they spoke with the consultant and now I’m just waiting for a contrast ct scan referral. Too bad they refused to look into my other nose-related worries, I thought I could shoot two birds with one stone, considering it took a while to see a specialist. But if I want that sorted, need to be referred again apparently. Why is it so difficult to get answers again?

It is frustrating, especially when you have to wait so long for each appt.! It saves time to have to see someone under the consultant- but sometimes they can be more aware of unusual conditions being fresher out of med school… obviously not in your case though! Look on the positive side- at least you’ve been referred for a CT with contrast, and I know you’re worried about that lump you can feel, but the CT should be able to put your mind at rest hopefully!
Yes, doctors are very wary when you mention looking at things online- I guess they must see patients all the time who’ve googled their symptoms and come up with something wacky, which probably 99% of the time is completely wrong- but very bad if you’re the 1%!!
So more waiting for you… hope that you can manage your worries for a bit longer…

It is frustrating indeed, especially when you know you have HA but you don’t want to be going to the doctor TOO often because you know you’re a bother! Fair enough, I understand that some rarer conditions can fly under even a senior doctor’s radar but that’s why I believe that doctors should be a bit more open minded and listen to someone’s findings. It’s not like I could come up with something like Eagle’s, heck I didn’t even know styloids were a thing that existed! Anyway…I finally got a letter for the CT scan, it’s in less than a month now, so not too bad. Lump hasn’t changed at all since I found it, so that’s a thing. I have a question though - when you get a scan for your styloids, what area do they scan? Do they scan only that particular part of the jaw/neck or does your whole head get scanned? I’m asking because of the previous nasal worries I mentioned, basically one of my posterior nares feels completely different (it’s completely blocked, eek :frowning: ) and I wondered if the CT scan will reach that far? I hope it’s not a tumor, but knowing my luck…anyway it’s probably my anxiety talking again, but what can you do! Again I thank all of you guys for all the information you’re providing me with.

I think that they did most of my head, not 100% sure- the images I had done were different from the ones most people get; instead of front on mine were from the top of my head going downwards. I don’t know if that’s just the way the doctor I was under prefers doing them… If you’re concerned about anything else perhaps you could ask the radiographer what it covers.
Glad that your lump hasn’t changed, and I’m sure that the month’ll go fairly quickly!

My CT scans were of my full skull & neck. There are pictures on some of the posts at the top of the Forum list that have pictures of people’s CTs. You can see that the nasal area is included in all of them. I expect yours will be, too.

:slight_smile:

My scans were of the whole head, you can see my scans that I turned into 3D pics by searching my Forum Topic. I made them using a program that is linked from this. Living with Eagles. Someone was nice enough to even provide directions for DIY 3D pics from CT.

Hi Sparrow i also have health anxiety really bad and a fear of doctors and anything medical. Ive just recently been diagnosed as my scan was pretty obvious and have the bone behind one tonsil but i have also swallowing pain on the other side and because of my HA im still thinking cancer and wondering did they miss something because when i got my scan and throat scopes they were looking for problems on the left at first and then i developed pain on the right side a couple of months later in my soft palate and behind my nose. I also went through the lymphoma obsession a year ago when three lymph nodes came up at the back of the head and ear for no reason whatsoever! That was another nightmare i still wonder was it a warning sign that eagle syndrome was on its way! So i know how you feel with the HA. Your scan should deffinately show the styloids if you can feel it in your tonsil.

Ah so it seems there’s generally two types of CT scans, either downwards the head or downwards the face. Are both of them good enough to see the styloids, I imagine they’d the easier to see face-front? By the way, did you guys have a blood test done before your CT scan? I had to go get one done and wasn’t told what it was for by the receptionist which was a stupid step because it sent me into a panic attack. The blood lady did tell me it was for the scan, I just didn’t expect needing blood test for a scan.

July, having to battle health anxiety every single day for pretty much a year and a half now, I really feel for you! As a kid I had a fear of doctors as well, mainly because I was scared of them telling me something bad. Maybe that’s why I have full blown HA now…now I don’t fear doctors haha, but I’m only scared of very very bad results from tests, scans etc. Is your ‘tonsil bone’ visible? Did your doctor actually palpate it or brush it off as it’s not visible? I know how you feel about them missing something - those thoughts tend to come back to me. Sometimes the palate can feel ‘different’ and maybe even painful when you have allergies? And I wouldn’t be surprised if eagle’s could cause pain there as well! Personally my ear is still freaking me out because it just feels different, I still rarely get shooting pains and now I have heavy dullness setting in. But the dullness sometimes jumps from left to right, so maybe it’s pollen/weather related? And don’t get me started on lymphoma…the thought of it is still in the back of my head, lurking. If it wasn’t for my lymph nodes popping up literally everywhere in my body (I literally have maybe between 10 to 20 palpable ones :frowning: which is a scary thought when I type it out…) I don’t think I’d have hypochondria now. It’s literally wrecked my life and I don’t know what to do. And naturally, new lumps and discoveries don’t help!

If you have elongated styloids both sides, the symptoms can jump side to side… I’d have days where things were worse, then would change sides, or be really painful, then go completely for a bit. It is weird, but this does come up regularly, symptoms coming and going for no reason!

So I’ve just had my CT scan today. Needless to say my HA was having a field trip today, not because of the procedure itself but fear of the results. The hospital staff were lovely though! Barely felt any effects of the contrast as well which is good I suppose :slight_smile: I asked the prep lady to take a note for the radiographer to look at the styloids specifically but thankfully that was already specified in my case file. I did ask how much they are asking as well and I actually think they aren’t scanning my full head - I think only my whole neck and maybe half of my head? Well, either way now it’s the hard part - the nerve wracking wait for the results. They said it should be around a week or two, but the consultant told me it can take up to two months? Oh well, I will be stressed out either way - mind you if I get a call from the hospital this week I think I might pass out because of anxiety!

Glad that you’ve had the CT and that the staff were helpful. They don’t need to do the whole head, just the skull base area (so from ears down) and the neck will show enough. They want to keep the radiation to a minimum, which is obviously a good thing!
I don’t know what they’ll do with the results- I had my CT done at the request of the consultant I was seeing for the ES, at his hospital so the results went back to him, and yes, it was a stressful 2 months to wait for the follow up appt. with him! Sorry, I can’t remember- did you have to go through your GP for the CT or was it through the ENT? If it was through the GP then hopefully the results will go back to them, and should be quicker. I don’t think the results take that long, it’s just the UK system of having to wait to see the specialist…
Let’s hope that you hear fairly quickly, and that you don’t have to worry for too much longer!

My request was through the ENT. It would be mission impossible to get anything more than an ultrasound through my GP! From what I gather once the scans are evaluated they go back to the hospital consultants, who then set up any further appointments etc. Yes that’s what I thought, the time between scan and results is quite reasonable, but the time between result and seeing someone again, especially if it’s not anything too major can be quite the wait! At the moment I’m more worried about my sinuses because half of my face is burning up, I wonder if those will be included in the scan, oh well, all I can do is wait and see I suppose!

@Sparrow - see if you can get a CD of your CT. There is a really cool app that allows you to make a 3-D image. I found it super helpful to look at my own images. If you get the CD let me know.