Looking for insight: persistent left-sided head, neck & ear pressure

[Trinamc]

Hi everyone,

I wanted to share a bit of my story and where I’m currently at, as I’ve been struggling for quite some time and thought this might be the right place to reach out.

For a long time now, I’ve been dealing with constant left-sided symptoms. This includes a persistent left-sided headache, neck pain, and a heavy feeling of pressure in my head. The pressure and pain involve my jaw, ear, neck (front and back), and up the back of my head, all on the left side only. My left ear often feels blocked or uncomfortable, (popping) and the pressure can feel deep and hard to describe.

The pressure fluctuates throughout the day. At times it’s more manageable, but by the evening it’s usually much worse. I also notice it increases when I’m moving around, bending forward, or putting my head down, which really adds to the discomfort.

About six months ago, I developed what was diagnosed as chronic sinusitis, and that’s when the headache became significantly worse. I went through three rounds of antibiotics and steroids, but the headache and pressure never improved — if anything, it felt worse. Eventually, I was told there was nothing more that could be done from a sinus point of view, even though the symptoms continued.

I was then referred to a neurologist, who diagnosed me with migraine. I’ve never had a migraine before. I was started on Imgality, but unfortunately it didn’t help at all. I also had an occipital nerve block — and when the local anaesthetic was active, I had immediate relief, especially in my neck and the back of my head. That brief relief was honestly amazing. However, once it wore off, the pain returned, and the rest of the headache and pressure never really improved.

Since then, I’ve tried physiotherapy and pretty much everything I can think of, but I still don’t get any lasting relief. I work as a painter, and I’ve reached a point where I can’t tolerate paint fumes at all anymore. Even mild fumes cause the pressure in my head to build rapidly, with a burning sensation in my nose and eyes, and then the head pressure just escalates again. It’s been incredibly hard and very debilitating, and the pain feels never-ending. I’m just desperately hoping for some answers or relief so I can get my life back.

I decided to see a dentist, as I wondered if my symptoms could be jaw-related since I have quite a bit of jaw pain. A dental panoramic X-ray picked up calcification of the stylo hyoid process, which was then reviewed by a maxillofacial surgeon, who confirmed the finding and raised the possibility of Eagle syndrome.

I then went on to have a CT scan, which was reported as showing no elongation and nothing significant. I was never told there was elongation — only calcification — so that added another layer of confusion.

I’ve since learned that elongation isn’t the only factor, and that calcification of the stylohyoid ligament can still cause symptoms.

I also continue to have a feeling of constant congestion and post-nasal drip, even though my sinuses are now reported as clear.

Right now, I’m still trying to piece everything together and understand what’s actually driving these symptoms. Finding this group has helped me feel less alone and a bit more hopeful after a long period of feeling dismissed and exhausted.

Thank you so much for taking the time to read this. If anyone has had a similar experience or has any insights, I’d really appreciate hearing from you I’ve been reading lots of your stories and I’m so impressed with your strength and courage.

[Trinamc]

[Trinamc]

[Trinamc]

[Trinamc]

[Jules]

Your styloids aren’t elongated, in fact they’re really short, but they’re unusually shaped & are very thick, I can’t recall seeing styloids quite like that before! They could well be compressing your IJVs right where they emerge from the skull base (through a gap called the jugular foramen). It looks like there could possibly be a bit of compression further down at the C1 processes too, but can’t say for definite from that angle… The possible IJV compression would explain the head pressure you’re getting . Sometimes the head pressure can cause CSF leaks, so if you ever get clear fluid coming from your nose (or ears) & a metallic taste, that can indicate a leak.
You do have sections of calcifications on the stylo-hyoid ligaments; they’re not large, but can be enough to potentially rub on nerves & cause pain.
Your hyoid bone processes look pretty long & needle-like too, sometimes these can cause pain, clicking throat sensations or irritate blood vessels & cause fainting or heart arrythmias, although you don’t mention those symptoms?
Your thyroid cartilage looks quite calcified too, which we sometimes notice, but I don’t know if that’s clinically significant.
I’m sorry but I’m not good with tech so can’t label any of the structures in your imaging…
I don’t know how possible it is to get referrals to doctors in Australia, or whether you’d be able to travel, but A/Prof Michael Elliot in NSW, along with Dr. Prashanth Rao have done styloidectomies & C1 shaves, so would be more knowledgeable than most ENTs about IJV compression.

[Isaiah_40_31]

@Trinamc - Welcome to our forum but I’m sorry for the reason you are here. Your styloids look like molars to me, something you’d find in your mouth vs extending from your skull. They are very unusually shaped & thick.

I agree w/ @Jules’ comments about what she sees in your imaging & will add that your right IJV is your dominant one. You can see how much thicker it is than your left side, however, while your left side may have some compression caused by the TP of C1, I see worse compression lower down on the vein. Lower compressions are caused by soft tissues & where yours is, your SCM, the largest of our neck muscles, could be causing or contributing to it. There can also be other causes in that area such as the internal/external carotid arteries, scar tissue, lymph nodes, or possibly a nerve, so please don’t take my suggestion as a diagnosis.

Pressure & pain up the back side of your head can be the result of collateral veins that have expanded there to try to help your left IJV drain the blood from your brain. Collateral veins can be quite painful. I didn’t see any in the images you posted, but that means nothing as they’re usually inside the skull.

You have a bigger piece of stylohyoid (s-h) ligament calcification on the right than on the left where there are two small ones. Since your symptoms are more vascular & left sided, I suspect your ligament calcifications may not be causing symptoms.

Try sleeping with your head elevated at night to see if that reduces your symptoms at all. Icing your neck for 15 min. every couple of hours w/ a thin cloth between ice pack & skin to prevent ice burns can help, too. Some of our members with IJV compression have been prescribed a blood thinner which has helped reduced their head pressure while they await surgery. Those most often mentioned on our forum are Plavix, Xarelto, & Brillinta but there are others.

@Trinamc

I then went on to have a CT scan, which was reported as showing no elongation and nothing significant. I was never told there was elongation — only calcification — so that added another layer of confusion.

I expect the calcification mentioned by your dentist/maxfac surgeon is the bits of calcification I mentioned on your styloidhyoid ligaments. As Jules said, sometimes these are a significant cause of symptoms but sometimes they aren’t. It’s hard to know for sure even for doctors.

Here are the images I annotated. Please let me know if you have questions.

[Trinamc]

Hi Jules,

You honestly have such a wealth of knowledge, and I’m really grateful you took the time to explain things to me. I can’t tell you how much it helps. I’ve been feeling quite lost at times through all of this, and if it weren’t for this page and the support here, I think I’d be really struggling. It’s just so reassuring to be able to learn from people who understand.

I get quite a bit lightheaded especially getting up too quick and the brain fog is awful. That’s the thing my partner and brother have been so concerned about I forget words or my speech can be slurred at times. Maybe that’s from the pain. I wouldn’t say I have throat cracking but I do sometimes feel like something is pointing or pressing into my throat. But again only on the left side and it’s not all the time.

I had an ENT appointment recently that I’d been really looking forward to, but unfortunately it was quite upsetting. I was completely dismissed and told I shouldn’t even have come to the appointment as it’s not an ENT issue, which made it really hard to stay positive. I’m trying not to let that discourage me, but it was tough.

At this stage I’m hoping my GP might be able to refer me to Professor Elliott — that would honestly be amazing, as he seems to really understand this area from all the stories I’ve read.

Thank you again for everything you do here

Trina

[Trinamc]

@Isaiah_40_31

Welcome to our forum but I’m sorry for the reason you are here. Your styloids look like molars to me, something you’d find in your mouth vs extending from your skull. They are very unusually shaped & thick.

I agree w/ @Jules’ comments about what she sees in your imaging & will add that your right IJV is your dominant one. You can see how much thicker it is than your left side, however, while your left side may have some compression caused by the TP of C1, I see worse compression lower down on the vein. Lower compressions are caused by soft tissues & where yours is, your SCM, the largest of our neck muscles, could be causing or contributing to it. There can also be other causes in that area such as the internal/external carotid arteries, scar tissue, lymph nodes, or possibly a nerve, so please don’t take my suggestion as a diagnosis.

Pressure & pain up the back side of your head can be the result of collateral veins that have expanded there to try to help your left IJV drain the blood from your brain. Collateral veins can be quite painful. I didn’t see any in the images you posted, but that means nothing as they’re usually inside the skull.

You have a bigger piece of stylohyoid (s-h) ligament calcification on the right than on the left where there are two small ones. Since your symptoms are more vascular & left sided, I suspect your ligament calcifications may not be causing symptoms.

Try sleeping with your head elevated at night to see if that reduces your symptoms at all. Icing your neck for 15 min. every couple of hours w/ a thin cloth between ice pack & skin to prevent ice burns can help, too. Some of our members with IJV compression have been prescribed a blood thinner which has helped reduced their head pressure while they await surgery. Those most often mentioned on our forum are Plavix, Xarelto, & Brillinta but there are others.

@Trinamc

I then went on to have a CT scan, which was reported as showing no elongation and nothing significant. I was never told there was elongation — only calcification — so that added another layer of confusion.

I the calcification mentioned by yo. As Jules said, sometimes thsignificant cause of symptoms but sometimes they aren’t. It’s hard to know for sure even for doctors.

Here are the images I annotated. Please let me know if you have questions.

Hi Isaiah,

Thank you so much for taking the time to look at my images and annotate them — it truly means so much to me. I feel quite lost at times and often don’t know where to turn, and this page honestly feels like it has come into my life at exactly the right moment, just when I was starting to feel like giving up. Having this support really helps.

Thank you for explaining everything so clearly about the IJV, the transverse process of C1, and the SCM. Even just having some feedback and understanding makes such a difference — it’s reassuring to feel heard and supported.

I really appreciate your suggestions around blood thinners as well. It helps to at least have an idea of possible options or directions to discuss with my doctors. I’ve been sleeping with my head elevated and that does seem to help, so I’ll continue with that. I haven’t tried icing yet, but I’m going to start today and see how I go, as the neck pain can get quite intense. Sometimes it feels extremely tight/stiff and then pain can shift from a throbbing ache to more of a nerve-type pain.

Thank you also for identifying the small areas of calcification. Even if they aren’t directly related to my symptoms, it really helps to understand what I’m seeing and what it might — or might not — mean.

Thank you again for your kindness, time, and all of your suggestions. It genuinely means a lot.

Trina

[Isaiah_40_31]

@Trinamc

I get quite a bit lightheaded especially getting up too quick and the brain fog is awful. That’s the thing my partner and brother have been so concerned about I forget words or my speech can be slurred at times.

These are symptoms of vascular compression which you seem to have in spite of normal length styloids. I hope you’re able to get a referral to Prof Elliott & he’s able to help you!

Here’s a paper which has a lot of information about IJV compression but mostly related to elongated styloids, but it would still be good for you to read it. There have also been a couple of long webinars about “vascular outflow obstruction” which you can find on YouTube:

Webinar on venous congestion, brain and neck disorders

I can’t find a link for the second one but it is provided in this discussion from our forum by our member @stuuke on Feb 4. You’ll need to scroll down the discussion a bit to find it. Date is in the right upper corner of each post:

Headed to Denver tomorrow

I’m on Ketotifen now. I haven’t noticed any improvement. I really think the Vagus nerve is an issue I’m having but convincing doctors of it is another thing. Did the decompression help relieve his Vagus nerve? Did anyone else watch the Venous Congestion webinar? It was pretty interesting. The doctor(Yoon-Hee Cha) that Dr. Fargen recommended for Botox was part of the panel. [Venous Congestion with EDS Webinar]

The second one deals primarily with venous congestion (IJV & other veinous compressions) caused by or related to Ehlers Danlos Syndrome. That might be another thing worth looking into in your situation.

If you find icing your neck makes your pain worse, try heat. Heat does work better for some people. Ice worked best for me.

[Trinamc]

Thank you so much Isaiah, for sharing these webinars — they were incredibly informative and honestly gave me some much-needed hope. The topic of vascular compression and venous congestion is so complex, and it’s clear that it’s still a relatively emerging area. Unfortunately, it also seems to be something that many doctors aren’t very familiar with yet.

What really stood out to me was the discussion around how compression isn’t always about the length of the styloid — that even shorter, thicker styloids or other anatomical factors can still cause significant issues. That resonated deeply with me.

I recently had a CT venogram and angiogram, both of which came back as “normal” with no compression reported. However, I continue to have persistent and very real symptoms, which makes this extremely difficult and confusing to navigate.

One thing I’ve noticed is that my symptoms change significantly with posture and head/neck positioning, which makes me wonder whether more dynamic imaging might be more appropriate in my case, either now or in the future.

One of my biggest struggles right now is simply trying to obtain a referral for a second opinion, ideally with Professor Elliott. My GP has already referred me to an ENT, but unfortunately that experience was very good. The ENT dismissed me outright, didn’t listen to my symptoms, and told me it wasn’t an ENT issue before any real discussion could take place.

Because my imaging was reported as clear, I’m finding it hard to be taken seriously or to advocate for further assessment — despite how unwell I continue to feel. It’s incredibly frustrating to be stuck in this position, but learning more about venous compression and these nuances has helped me understand that “normal imaging” doesn’t always tell the full story.

I was just wondering if anyone in this community has had a similar experience, or if anyone has any suggestions on how to approach a GP for a referral when CT imaging appears normal, or whether dynamic imaging was helpful in their case.

Thank you again for sharing this information — it truly means a lot to those of us still searching for answers.

[Jules]

We’ve had a few discussions recently also about how some people don’t have what looks to be particularly significant compression, yet are highly symptomatic, yet others with very compressed IJVs don’t have symptoms that badly…And some people manage/ compensate for quite a while with the venous obstruction, then suddenly they don’t! The veins around the back of your head can swell (collateral veins), to take the extra blood load when IJVs are compressed, & these swollen veins can cause pain too. Yours look like they might be a bit swollen, but not as much as some people’s. But the experienced VES doctors recognise the symptoms of IJV compression & will treat VES, not just relying on the scans.
Whether your GP would watch the webinars I don’t know, if they would it would help them see that you do need more imaging, and a referral to someone with more experience? Otherwise there are lots of research papers in the research papers category about IJV compression, perhaps you could print off a couple & show your GP?
In the UK we can pay privately to see a consultant and have scans looked at by them, is that possible in Australia?

[Isaiah_40_31]

I’m reposting this picture of one of your images which I annotated. Your CT scan w/ contrast clearly shows IJV compression on the left & I labeled it but noted it’s soft tissue which is causing the compression though C1 might have a minor role up higher. It’s very important that you share this image w/ any further medical professionals you see & ask for an explanation for that flattened area if they insist there’s no compression.

As you suggested, a dynamic scan could also be helpful, but if the worst of your compression is lower down, the scan will need to include the whole neck, not just the area near the skull base. I have IJV compression on my right side which isn’t bothering me but looked awful in the MRV I had. When I had an angio/venogram, no compression showed up on the right, in spite of what my imaging showed. I have wondered if the venogram was negative for compression because the catheter was able to push the soft tissue compressors out of the way & squeeze through the narrowed area w/o incident & w/o noticing a problematic blood flow gradient. If so, then that could also have happened in your case.

[Trinamc]

Thank you so much for taking the time to explain all of that — it really helps put things into perspective. I’ve found it so reassuring hearing how differently people can be affected, even when the imaging doesn’t always look dramatically abnormal. It makes so much sense now why scans alone don’t always tell the full story.

I really appreciate you pointing out that experience doctors recognise the clinical picture and symptoms, not just what’s obvious on imaging. That’s been one of the hardest parts — feeling dismissed because reports say “no significant compression,” despite how unwell I feel. The explanation about collateral veins around the back of the head also helped a lot — knowing that even compensatory changes can cause pain is validating.

I’m not sure my GP would watch the webinars, but I think you’re right that bringing in a couple of relevant research papers could really help support the case for further imaging and referral. I’ll definitely try that approach.

I’ve actually just travelled back to Ireland, and your comment about the UK system gave me a lot of hope. It’s really encouraging to know that a referral might not be necessary if I can get a private second opinion. I was wondering if you know of any consultants in the UK who are experienced with VES/IJV compression and who are open to reviewing imaging remotely? If there’s anyone in particular you’d recommend for looking at scans, I’d be incredibly grateful.

Thank you again for your kindness and for sharing your knowledge — it honestly means more than I can say.

Take care,
Trina

[Trinamc]

Thank you so much for taking the time to explain all of this— I honestly can’t tell you how helpful that is. Knowing exactly where the flattening is gives me something concrete I can actually bring to future appointments and ask informed questions about. I never would have recognised or understood any of this on my own without your help.

Your explanation about dynamic scans and the importance of imaging the whole neck (not just the skull base) makes a lot of sense, and I really appreciate you sharing your own experience as well. It’s reassuring to hear how imaging and venograms don’t always line up, especially when soft tissue is involved — that really helped me understand how compression can still be present even when tests appear “normal.”

I’m extremely grateful for all the time and knowledge you’ve shared. The support and guidance you’ve given has made a huge difference — both practically and mentally — and I truly appreciate it more than I can say.

Thank you again,
Trina

[Trinamc]

I’ve also shared a few images of the back of my head as well, in case they’re helpful or show anything additional. I’m not sure if they add much, but I wanted to include them just in case there’s anything else you’re able to see or think is worth noting.

I hope it’s okay that I’ve shared these with you too — absolutely no pressure at all to comment, but I really appreciate any help or thoughts you may have.

Thank you so, so much for taking the time to look at all of this and for sharing your insights. I really, really appreciate all of your help — it truly means a lot to me.

[Jules]

I missed the IJV flattening further down that @Isaiah_40_31 spotted! Looking at the new images you’ve posted, there’s some collateral veins which look larger than veins you’d usually see , especially on the left side, between the C1 process and the base of the skull. What’s interesting is that there appears to be a swollen blood vessel each side of the IJV which is possibly compressing them (especially on the left again), & it’s a little higher I think maybe than where @Isaiah_40_31 saw the compression on the other scans…I don’t know what that blood vessel is, if it’s the carotid artery then it looks more swollen than you would expect? I would ask a doctor about that if you get the chance ever to discuss your scans…Your right IJV looks like it might be the more dominant one (lots of people have one dominant one & one smaller one)
Mr Axon in Cambridge UK, does do virtual consults, so you could have an appointment with him, & he does know about IJV compression. He’s done lots of surgeries & has done some C1 shaves too. But he is a skull base surgeon/ otolaryngologist, not a vascular surgeon, so I don’t know if he would know about the soft tissue compression lower down.
Quite a few members have had online consults with Kjetil Larsen, at MSK neurology. He’s very good at spotting things in scan that other radiologists miss, that might be a possibility? He doesn’t do surgery, but you could possibly take his report then to a doctor in Australia?
These are the contact details for them:
Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Also does private work at Spire Lea hospital, Cambridge, for Spire Health care. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospital
Not currently a qualified doctor, but Kjetil Larsen has written numerous research articles about biomechanics, IJV stenosis etc and has helped several members with interpreting their scans. Appts are only available online currently:
Home - MSK Neurology

[Isaiah_40_31]

In the top picture of the two you just posted, @Trinamc, the left internal carotid artery appears to be causing at least part of the compression lower down on your left IJV. The right ICA may also be causing some compression of your right IJV. I believe those are the enlarged vessels @Jules noted, & they do look quite engorged from the back side.

[Trinamc]

I’m very grateful for the suggestions and the contacts you’ve shared — it really helps to know there are still avenues to explore and people who understand these issues so well.

Wishing you a very happy Christmas and I hope you’re able to enjoy a well-deserved break. Best wishes to you for a healthy and happy New Year ahead

[Trinamc]

Thank you so much for taking the time to annotate this image also — I really appreciate it more than I can say. You’ve helped me understand things and it’s given me some real hope.
Thank you again for all your help and kindness. Wishing you and your family a very happy Christmas, and I hope you’re enjoying the festive season. Best wishes for a healthy and happy New Year ahead