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View Full Version : Need to have a CT scan, and terrified they'll find I have a brain tumour



LG18
13-12-22, 16:33
Hi, I'm 25 now and It's been a long while since I posted here. Generally, I had been doing better with my HA and OCD having been through therapy.

But alas, it has reared its head again as I face possibly my biggest fear -- having a scan.

For years I've had this nondescript neck pain, that I've come to worry was a whole range of deadly diseases since I discovered it. Since all of that, I came to realise that it is likely something called Eagles syndrome, which is essentially an elongated bone that can press into the surrounding tissue of the neck and even compress veins and arteries.

I have basically every symptom of this and have consulted others over on the Eagles syndrome forum, and they all think I have it too. The symptoms are muscular neck pain around the ear and base of the skull, constant mild tinnitus that is exacerbated by certain head movements, and a whooshing I get in my ear (pulsatile tinnitus) which happens only sometimes if I stand up quickly from lying down. All of these are symptoms of ES, and the real tell was that I can physically feel what is presumably this piece of bone under my jaw and in the tonsil area -- which you're not supposed to be able to do, and if you can feel it, its highly indicative of the condition.

So it seems pretty clear I have this, and have had for several years. Elongation of the styloids isn't too rare, but having the condition is considered rare (though my symptoms are very mild and far less than the majority of people on that forum who find it debilitating).

The solution to the problem is a styloidectomy, where they basically remove the bone. It's considered best to be left alone if it isn't causing problems, but my issue is complicated due to the fact that I am currently in the process of having consulting to have jaw surgery. So I want this looking into as I don't want it to go undiagnosed by the time I have the jaw surgery.

Diagnosing it requires a CT scan, and it's completely set my anxiety running wild. I've never had any sort of scan like this and it's my ultimate fear. Despite pretty much everything indicating I have ES, I can't help but think, "what if I'm wrong and I have a brain tumour".

I initially wasn't too concerned as I thought that if I did have a brain tumour, I would have a lot worse symptoms by now having had this for years, but then I recently read an article where a woman had a tumour for ten years and didn't realise until she started to get some weird symptoms. It was really slow growing and now inoperable. Couple this with the fact that Eagles syndrome is rare, and I'm thinking, "maybe it's actually more likely I have a brain tumour with these symptoms. Perhaps that's less rare".

I'm sat here on my own trying to get on with a uni assignment, and it's just all I can think about. I'm not sure what I'm hoping to gain by posting here as its something I cut out as a coping mechanism during my therapy, but I feel I've relapsed and I'm in a bad way with it.

Would appreciate some positive thoughts :(

Many thanks.

NoraB
14-12-22, 06:43
I saw your thread title, and it reads, 'Need to have a CT scan, and terrified they'll find I have a brain' :ohmy:

One day, when you're not terrifying yourself on Google (and forums of rare conditions), you might laugh at this. (I had a good laugh, so thanks)


Since all of that, I came to realise that it is likely something called Eagles syndrome, which is essentially an elongated bone that can press into the surrounding tissue of the neck and even compress veins and arteries.

Not a diagnosis.


I have basically every symptom of this and have consulted others over on the Eagles syndrome forum, and they all think I have it too.

Also not a diagnosis.


So it seems pretty clear I have this, and have had for several years.

Symptoms are not proof of what you think you have.


Diagnosing it requires a CT scan, and it's completely set my anxiety running wild. I've never had any sort of scan like this and it's my ultimate fear. Despite pretty much everything indicating I have ES, I can't help but think, "what if I'm wrong and I have a brain tumour".

What if you have neither?


I'm sat here on my own trying to get on with a uni assignment, and it's just all I can think about. I'm not sure what I'm hoping to gain by posting here as its something I cut out as a coping mechanism during my therapy, but I feel I've relapsed and I'm in a bad way with it.

So you have muscular pains around the back of the skull, and you are at uni - presumably spending a lot of time hunched over a keyboard? :huh:

Neck pain from Computer Use - Computer Posture (computer-posture.co.uk) (https://www.computer-posture.co.uk/neck-pain-computer/)

If you've been prone to using headphones/earbuds and playing loud music etc, then that would account for some mild tinnitus. (That's certainly how mine started in my 20s).

Has your GP referred you for a scan? (While I very much doubt that they'd find a tumour etc, it might reassure you to know that they've found a brain). :yesyes:

pulisa
14-12-22, 08:03
If you told the doctor that you think that you have Eagles syndrome and need a CT scan...what do you think he/she would say?

Lolalee1
14-12-22, 08:05
He/She might say - There’s the door!!!