Are these my styloids?

Shocking that the radiologist who looked at the scan didn’t note something in the report about the area that is enlarged. Definitely looks to be a problem. I’m really glad you have an appt tomorrow that may give you some answers. Also very sorry you’re feeling so awful. I hope this is diagnosed & resolved soon. It would be great if you don’t have ES!! :pray: :hugs:

2 Likes

@Isaiah_40_31 - that area looks to be parotid gland and nothing was said at the time. In fact my then phone consultation didn’t have any results and I was left in tears. My daughter phoned to complain and 10 minutes later they phoned with the miraculous results which they said, were all normal! I was also told that bloods were also normal despite my not remembering them being taken! It took a further 2 months, a change of GP and another (private) consultation to reveal that no bloods were taken at all during my stay both in ED and an acute medical ward.

Today, I attended an emergency appt and find there are no results available yet for the CT petrous bones done last week. So I wonder, were they writing about in the letter which must have been written BEFORE I had the scan?

I now await an urgent MRI brain, I had another panoramic x Ray while I was there.

The pain and dizziness is becoming unbearable and my throat is so sore with no obvious cause. I’m feeling very sorry for myself so excuse me x

so sorry that you’re feeling so rough, I hope that the emergency appt throughs some light on what’s going on…strange that you’ve been told after the MRI about results for tests you’d not had, I wonder if they’re getting your notes mixed up with someone else’s! Or maybe you’re just very unlucky…Thinking of you & sending you a hug :pray: :hugs:

1 Like

I"m sorry your results have been so slow to get to the doctor. In the US, scan results are often delivered to the doctor the same day as the scan but not always to the patient. We are often handed a CD of the scan before we leave but other times have to ask for one.

I’m glad you’ve gotten another panoramic x-ray & hope it shows something about your styloids. I’m praying that the MRI is scheduled this week since it’s labeled urgent.

No worries about feeling sorry for yourself. That happens easily when we feel awful & things aren’t lining up medically for immediate help. We’re here for you no matter your mood. Complain away if you need to. Hopefully there are much better days ahead. :hugs:

2 Likes

Thank you @Isaiah_40_31 - I may not have Eagle in the end, but for now, your care and support means a lot to me. Thank you all xx

3 Likes

@Mcwelly I’m so tired of these radiologists not noting important structures until asked. Here’s what I have done and what I would like to share with you.

The proper diagnosis for Eagles is a CT scan of the neck or temporal bones. Radiologists do not note elongated styloid processes or calcified stylohyoid ligaments on CT scans. I called the place where I had the CT scan and asked for an addendum to my CT scan specifically requesting the measurements of my styloid processes and other structures related to Eagles syndrome.

Next - Google “styloid process in tonsillar fossa” and look at the picture of what the styloid process looks like poking through the tonsillar fossa. Then look in your throught to the side. That’s how I found mine. It looks like a bump. If you try to press on it you may gag (gag reflex) but you can also feel the pointy bone if it’s there. Don’t push on it. It will hurt.

Next - feel underneath your ear, slide down just behind your jaw. Do you feel a bone there? If so, when you push on it do you feel pain?

Radiologists can be very quick with their report. However, they’re taught not to include other structures that “may or may not” cause symptoms. That includes the styloid processes. You need to ask for an addendum and be specific in asking them to measure the legth of the styloid processes. It’s so unfortunate, but I have even educated 2 head and neck surgeons last week on Eagles. I called them to yell at them for not looking at my scans, but they were so apologetic and nice. They’re not taught about Eagles. There’s no continuing education on it.

If you do have Eagles, I hope this helps. If you don’t have Eagles, I pray that you find help and that people listen and help you find a solution so you can be out of pain.

2 Likes

Thank you @Danielle1. Everything is so disjointed here and with only my dentist to look or listen to me, I’m currently back under the Max Fax as certainly in the early times 3 years plus ago, it was a undiagnosed/misdiagnosed dental infection that led to the whole sorry saga.

I’ve had an initial MRI TMJ of which I have a copy. Told on phone all was normal.
Panoramic dental x Ray, all was normal.
Another ditto.
I had a CT neck last year but to rule out # of C2 after a bang on the head - told was only OA.
I’ve had an MRI neck recently, not discussed but told was ok.
Had a neck USS
Had a sialogram
CT petrous bones done 26 October, letter arrived next day saying ears ok. Subsequently found out it had not been reported on yet so I take this with a pinch of salt.

I have another MRI this Thursday - of the head this time.

How many of these structures have been overlapped or missed by not actually listening to the patient? When does max Fax become ENT?

I continue suffering, my throat is constantly red and sore but each visit to ED or clinic seems to make me more of an anxiety case!

I’ve asked for a copy of all my scans on disc as I believe that Eagle or not Eagle, the answer is there, if reviewers thoroughly enough.

Oh, my bloods are always ‘normal’ but I have repeats this week for previous positive ANA.

I get through this one day at a time but it is very hard.

Love to all :heart::heart:

3 Likes

Ps, here in UK, patients rarely have their reports read or discussed with them let alone have a look at the scans.

1 Like

@Mcwelly I am so sorry you’re going through this. I hope and pray that someone will care enough to go outside of normal protocol to help you. I am sending hugs, prayers and positive thoughts your way.

4 Likes

Good morning all. I had an MRI head last week, with contrast and continue in unbearable pain until my Max Fax appointment next week. I finally managed to get a GP appointment last Friday and he did listen and told me my last bloods were all “normal” (yet again). Because of the weight loss and haematuria he has fast tracked me to a ? Kidney Ca but I can’t even comprehend this as I have trouble dealing with the pain. I am back on Amoxicillin (course number 12), ? Salivary gland infection. I did show the doctor the MRI pic I posted on here and when he saw it, he then prescribed the antibiotics. I started Tegretol at a low dose of 100 mgs bd but by yesterday I was 10 times worse, with severe agitation, restlessness, dizziness, diarrhoea, nausea, vomiting and a sense of something horrible about to happen to me. The only thing that helps the pain is Dihydrocodeine which I use sparingly, it take the edge off. Today I have NOT taken the Tegretol and feel better with just pain in the temple, cheek and jaw.

I am still awaiting my scans which I requested more than 2 weeks ago, I have no idea what is on them, what was reported or if anything was abnormal. I doubt Eagle would even be mentioned unless specifically asked for?

So sorry that you’re still feeling so rough & that the Tegretol made things worse…Unfortunately Eagles isn’t generally reported on unless asked for- we usually suggest that people request radiologists to look for the length & angle of the styloids, & to look for any calcification on the stylo-hyoid ligaments.
I’m guessing that you don’t have the energy to chase things up right now- do you have a family member who could help you out at all?
Sending you very gentle hugs :hugs: :hugs:

Thanks Jules, you’re right, I don’t have energy for anything at the moment and I’m still not even sure that Eagles is the culprit as contenders are also Sjogrens and Giant Cell arteritis, salivary gland infection…… I have not involved my children as to be honest, I had short shrift from one of them as when this started 3 years ago, she took a junior doctor at face value when he told her all the blood tests were normal, it was not until 2 months later that I found out that no blood tests had actually been done! The same thing happened with the MRI as they only discounted TMJ dysfunction and ignored everything else. My partner does what he can, ferrying me around but usually I go to appointments alone. I think probably like a lot of people, I hide myself away, sleep and take painkillers.
Xx hugs to all xx

1 Like

Oh @McWelly, I’m so sorry for the way you’re suffering. Lack of family support just makes it worse. I wish your daughter could have a more open mind & realize this isn’t the way you’ve spent your life behaving. I am glad your partner is being helpful.

I hope the MRI shows something. If you can muster the energy, please call & request the radiologist re-read the MRI looking for styloid length, angle, etc., as Jules suggested.

I hope this round of Amoxicillin does its job & you start feeling better. Feeling awful all the time is no good & does make it hard to chase down the cause(s).

I’ll be praying for you, too. :hugs: :pray:

2 Likes

Thank you Isaiah_40_31

I am hoping that something be will be seen and that when I get my scans, I can go and get another radiologist to properly look at them.

Whatever I find out, I will share with the Community, it has helped me and I know many people are still suffering and going through hell too.

Hugs :heart:

2 Likes

lol - i feel like a bit of an idiot… read this and immediately went to see if I could make them out. Unfortunately I have very large tonsils and couldn’t see anything. so of course I reached back there and pushed directly on one side. I have never felt such a pain shoot down my throat - it is still sore 24 hrs later. I have the vascular variety and have never really experienced that pain as such, so it was quite a shock. I completely missed the whole “** it will hurt” ** part

3 Likes

I’m sorry for your pain but you did experience what a knowledgeable ES doctor often does when confirming an ES diagnosis. I hope your pain subsides ASAP!

Were you able to get an appt. w/ Dr. Hepworth?

2 Likes

@Rather_b_hiking Oh no! I’m sorry but I’m laughing at your post. I know the pain you experienced :-(. Don’t push on it again! I hope the pain subsides soon!

2 Likes

@Isaiah_40_31 I did talk to his office and I will need to get a referral - not sure if I need to get this from my current ENT or wait to talk to Dr. Krempl?

I’m laughing too - I feel a bit like the little kid who touched the stove to see if it’s hot

2 Likes

@Rather_b_hiking - either one will do. Sorry you need a referral. That’s just another step that slows the process but it seems the more specialized doctors have that requirement now.