I have to say this is a brilliant forum—full of welcoming, informative people.
Around March this year is when my symptoms started. It began with an episode of vertigo when lying down in bed one evening (maybe just BPPV?). Over the next few days I felt very “off” (lightheaded/unsteady) and began noticing more symptoms—like feeling more unsteady when looking down. Around the same time, my neck started aching much more, and I would occasionally get radiating pain around the mastoid area behind my right ear.
About three weeks later, I developed pulsatile tinnitus in my right ear, completely out of nowhere. It was loud and very unsettling, and it sent my anxiety into overdrive. Thankfully it has stopped and hasn’t happened for the last couple of months. Since then I’ve also had other odd symptoms, including frequent ear fullness, lots of neck clicking, and aching at the top of my shoulder.
I’ve had an MRI/MRV/MRA which noted jugular compression, but the ENT didn’t feel any further work-up was necessary. I was only offered tinnitus retraining therapy. Another ENT ordered a cervical spine X-ray which showed osteoarthritis at C6–7. I’ve been having physiotherapy for that, and it has been beneficial—reducing my neck and shoulder ache, and I also feel less lightheaded.
Based on my symptoms and the research I’ve done, I’m now looking into Eagle syndrome/CCI/AAI as possible causes. That research is how I found this forum, and I’ve already learned a lot from it.
I also have some images from 2021 (taken during an investigation for dysphagia/pharyngeal pouch) which I think may show an elongated styloid. However, I’m not sure if I’m actually seeing something significant, or if it’s just artefact/normal anatomy.
I’ll try to upload the images ASAP, and I’d really appreciate any thoughts if people don’t mind taking a look.
I’m absolutely astounded that you’ve had a diagnosis of IJV compression & no further work-up or follow-up was deemed necessary. That is ridiculous. Any radiologist or doctor who thinks IJV compression is something to be ignored needs some re-education! Even the symptoms you have point to the fact your IJV compression is causing problems for you.
I’m glad the PT is helping relieve your shoulder pain to some degree. Shoulder pain can also be a symptom of ES when the spinal accessory nerve is being irritated by an elongated styloid. That affects the SCM (sternocleidomastoid muscle) in your neck which in turn affects the shoulder.
I’ve circled what looks like it could be the tip of your styloid in your image, but it’s not the whole thing. A CT scan w/ & w/o contrast between skull base & hyoid bone is the best way to see what’s going on in your neck. If you can get the scan done dynamically (w/ your head turned L/R & looking up/down) that can show things that a neutral head position doesn’t show.
Mr. Axon is the UK doctor who is most experienced with styloidectomies where IJV decompression is also needed.
As @Isaiah_40_31 says, a CT with contrast is the best way to see the styloids & IJV compression, so frustrating that this has been noticed but you’ve not been offered any help! Mr Axon is very experienced with vascular ES; I don’t know whether you’d be able to get a referral to him? The NHS waiting times to see him are pretty long though, so some members have seen him privately if that’s an option?
Otherwise we’ve recently been given the name of a doctor in Sunderland, which might be easier for you to get a referral there?
Mr Ajay Wilson, Sunderland Royal Hospital, & also at Spire private healthcare. Mr Ajay Wilson - Oral & Maxillofacial Surgeon
Thanks @Isaiah_40_31 — I think you missed uploading the annotated image? And yes, it is indeed really frustrating that the ENTs don’t seem to think further investigation is warranted — just no patient advocacy, and it makes you question what they’re in this for?! The handling of this, both privately and on the NHS, has been a complete saga. For instance, the consultant’s follow-up letter to me reported the MRI as “reassuringly normal.” So you ask, how did I find out about the IJV compression… I found it in a more detailed letter he sent to my GP on the NHS app that I stumbled over while waiting on my blood test results! This wasn’t the only thing that had me miffed with this particular consultant’s mishandling of things, so, enough was enough — I requested all copies of medical images and notes from him/the hospital, and that is the last I’ll see of them.
I’ve also included a front-on image and highlighted around the bit that I think shows the styloid process. Is that it, or something else?
Thanks Jules. Yes, private is an option. Thankfully, a lot of my symptoms have settled down, but I haven’t felt like my normal self since it all started. As things have calmed down, I’m a little more chilled—but when I was at my worst, I would have gladly travelled anywhere within the country for help. Do you find that some other members report the same, e.g., symptoms that come and go?
Hi @carl I have seen Mr Axon privately through the Spire in Cambridge, the cost was £500 for 35 minutes to see him for ES. I was also referred to Mr Axon under NHS Addenbrookes and he has agreed to operate removing my styloid process & C1 resection for IJV compression, although there is a 15 month wait for the operation under the NHS. Hope this info helps.
Thanks Rosie, it does help. I didn’t really know you could be asked to be referred to a specific consultant on the NHS outside of your area until I read about it elsewhere on this forum. If I need to pay, I will, as I think the money would be well spent to sit in front of an ENT who isn’t dismissive and take the symptoms more seriously. I’ve only seen one ENT (out of two others) who has taken this more seriously, but still didn’t think the IJV compression was anything of concern despite my symptoms. He was more inclined to think it was a muscle / cervical spine issue.
Yes I was referred to Mr Axon by my NHS Neurologist in Norwich, but not until my elongated SP and IJV compression was picked up on this forum. My CT with contrast was originally deemed satisfactory. I don’t know whether the scans that you have had will help, but I had a CT with contrast available before seeing Mr Axon. Maybe other members can comment on what you have uploaded.
@carl - OOPS! Sorry about that! I added the image I annotated to my previous post. I can faintly see the styloid you outlined. Getting a CT scan w/ contrast as previously mentioned will be the best way to see how your styloid may be playing into your symptoms, especially the vascular ones.
Yes, it’s very common for symptoms to come & go , lots of members ask about that. Sometimes you can think of something which has caused it, but often there seems to be nothing obvious!
Just a note, Mr Axon hasn’t been able to do as many surgeries on the NHS as there’s a team which decide now whether somebody needs surgery or not. So if you were going to see him on the NHS there are certain symptoms he expects to see, here’s a link: UK surgeons - General - Living with Eagle
And also @byebyetwenties felt dismissed by Mr Axon seeing him privately because they didn’t have pulsatile tinnitus, here’s a link: New user and unsure of how to proceed - Welcome / New User Help - Living with Eagle
