5 years of symptoms, 18 months off work - vascular Eagles in the UK

Hi everyone, thanks for having me here.

I’ve been lurking for a while, reading everyone’s stories and with each one I read my stomach drops knowing that so many have been through the same frustrating and demoralising experience.

I’m 38F, from the UK. I used to work as a doctor in A&E until I was signed off work in December 2022 after having a breakdown to my boss where I told him “I feel like I’ve got dementia”.

I’d had a rough couple of years with separation from my now ex-husband and my Dad dying of a brain tumour, on top of working through Covid before that. Psych said it was depression, even though I pointed out my mood was only low because I had these cognitive issues that I couldn’t figure out - thinking about anything feels like wading through treacle, my intelligence and ability to understand things overall is only a little impaired but my mental processing speed, working & short term memory and executive function are shot, recalling certain things used to automatic/unconscious but now takes active effort, and I was making small but stupid mistakes. In addition, my ability to emotionally regulate has deteriorated and I’ve gone from calm and stoic to easily overwhelmed, tearful and frequently irritable and angry.

Anyway, I resigned myself to what my colleagues said and assumed I was depressed, even though I’ve had episodes of depression before and I was adamant that this wasn’t the case. I took antidepressants and after 3 months was completely convinced that it wasn’t depression - my mood was a little better but the cognitive issues were awful. I’d had to start taking a photo of where my car was parked at the supermarket so I wouldn’t have to look for it again, I ended up with four tubes of tomato paste in my cupboard because I’d forget I bought some, I had post-it notes on the door to remind me to check I’d put my clothes on the right way around!

My balance was off and I’d misjudge distances like stepping off a curb, and when I closed my eyes to rinse my hair in the shower I’d feel myself sway backwards.

I also had angular stomatitis and heels so cracked they bled, so I asked my GP to check B12, ferritin & folate which he did. My folate was low and my B12 was low normal/borderline. I’d been eating less healthily due to crushing fatigue and the mental effort of preparing proper meal so I figured that explained the folate, but my B12 should have been better considering I’d mostly graze and this included meat, eggs & dairy products.

My GP messaged me my folate result but declared he “didn’t think it was relevant”. Given my background, I was aware that symptoms of B12 & folate are actually different depending on which is deficient although they all get lumped together. I asked my GP to check my MMA and homocysteine levels, which are the metabolic substrates of B12 and folate respectively and this is a step recommended if clarity is needed. He wouldn’t, saying it’s not his remit so I got MMA tested privately and it was elevated, so either I was B12 deficient with ‘normal’ levels or my folate was so low that it definitely WAS relevant.

After that rigmarole, I knew there was no way he’d refer me for any other investigations into my cognitive decline so I organised a private MRI.

It showed hydrocephalus, but the radiologist suggested normal pressure hydrocephalus as there is significant ventricular dilatation but without some of the other radiological signs of acutely raised pressure. GP wrote to Neurology who saw me promptly in clinic but decided my cognitive deficits were “attentional” and said he would discuss my imaging with a Neuroradiologist but that since I was born prematurely and had a small intracranial bleed at birth, that the MRI appearances were longstanding from infancy. I’d tried to get my NICU notes a few years prior out of interest and told unfortunately they were stored in a basement and destroyed in flooding, so there’s no way to confirm whether this would be expected. I pointed out to the Neurologist that I never had any symptoms as a child and to cause ventriculomegaly like that, at some point there MUST be raised pressure - if it occurred in infancy I would have an enlarged head since my skull hadn’t fused. As it is, I have a small head - my snowboard helmet is a children’s large size. But he wasn’t interested, he’d made up his mind. His plan was to do bloods for autoimmune encephalitis, an EEG, and to discuss at MDT and then make a decision regarding a lumbar puncture and see me for follow up in 6 months.

I never heard from him again, despite chasing with his secretary and emailing him directly. He works in the same trust I did - I have previously worked directly with him in the course of my training, including picking up a neurological pathology that 2 consultants had missed… but I feel he’s written it off as my mental health too, despite this. I only know the results of my bloods & EEG because I requested my notes.

The EEG did show that after lying down for 10 minutes or so, I have an arrhythmia called bigeminy. I knew this - it’s part of a spectrum of other symptoms which have been getting worse since around 2016.

I tried to explain to my GP, my boss, the psychiatrist and the neurologist that I feel all of these things are relevant due to the time frame they’ve occurred/worsened over… but none of them want to look at it as a whole.

The other symptoms include:

  • ‘migraine’ - (usually) left sided headaches with nausea & photophobia plus a dramatic worsening of cognitive symptoms but also other neurological symptoms outside of headache episodes including subtle double vision, sensitivity to light, pulsatile tinnitus
  • in 2020 a 15 minute episode of sudden onset marked double vision that then resolved, in 2022 a 6 hour episode of sudden onset vertigo that resolved but then would reoccur with the ‘migraines’ for about 3 months afterwards but then settled (except if I tilt my head to look at the ceiling, so neck & head hyperextension then it can reliably be reproduced)
  • ‘allergy’ - sneezing, facial oedema, alternately watery/dry eyes, nasal & ear discharge, episodic wheeze, high eosinophils
  • hand & foot swelling with hands worse in the mornings and feet after standing, and at worst this is noticeably pitting oedema
  • intermittent tachycardia, exercise intolerance/shortness of breath on exertion, dizziness on standing
  • ‘IBS’ - acid reflux, bowel habit alternating between constipation and steatorrhea (oily loose stools), stabbing gallbladder pain, intermittent episodes of severe epigastric abdominal pain associated with fever
  • weight gain/inability to loose weight despite being fastidious with diet, symptomatic hypoglycaemia, abdominal fat accumulation, high cholesterol, mildly deranged liver function tests and CRP

On the NHS I’ve seen a rheumatologist for the hands and had ultrasounds of my gallbladder (negative), with spirometry for the wheeze confirming bronchoconstriction. My GP refused allergy testing even though the ‘allergy’ came out of nowhere at the same time the headaches, reflux, palpitations and hand swelling did.

To stop this getting too long, after neurology dismissed me, I started looking into all of these other symptoms as I was convinced they were related. At worst, I had to take 4x the usual daily dose of antihistamines to control the ‘allergy’ symptoms… and it was this fact that lead to a breakthrough. I saw ENT to rule out a sinus issue, then Immunology who said my IgE levels weren’t in keeping with an allergy but didn’t know what it was, then a Gastroenterologist for the abdominal symptoms, but she couldn’t find anything to explain it. Eventually I saw a Neurogastroenterology Professor, because I wasn’t accepting GP’s ‘IBS’ unless it came from an expert.

He was the first one to consider everything together and said the acute abdo episodes were vagally mediated gastroparesis and that he suspected was some kind of dysautonomia. He did some basic bedside testing and said my Valsalva response was wildly abnormal and he struggled to find my carotid at one point. The antihistamines were relevant not for their antihistamine effects but for their anticholinergic effects on autonomic nervous system signalling… and the B12 was relevant because to absorb it from food, you need intrinsic factor to be released from the stomach - this is under control of the vagus nerve. It takes 4-5 years for stored B12 to be depleted, so again this coincided with the timescale of symptom onset.

I tried to contact the Neurologist but got nothing so I organised a repeat MRI. It showed the hydrocephalus was a tiny bit worse.

I then arranged a scan of my neck privately, the website saying you’d discuss your problem with the clinician and they’d work out what to look at. The radiologist doing the scan was clearly skeptical when I described my symptoms and the ordeal it’s been to get anyone to listen. He did a carotid Doppler in the standard supine 45 degree head up position, and it showed good flow through my carotids - with my head resting back and in a neutral position or away from the side being looked at, I didn’t feel particularly symptomatic. He did detect low resistance flow in my external carotid and mixed resistance in my internal carotid on the left - this either means there is an anatomical variation where they lie in reversed positions when scanned at that point in my neck, or it’s often seen when the internal carotid is blocked. Mine obviously wasn’t in the scan position but it gave me another clue re: positioning. He could barely find my right vertebral artery, which fits with it being barely visible on MRI (it also has some concentric density around it and the vertebral vein alongside is dilated on MR).

I didn’t appreciate that the main issue was likely IJV’s so I didn’t ask him to look at those - to be honest I could tell the moment at which he’d decided I was mad, so I didn’t advocate for myself as well as I should have. I’m now nearly 18 months down the line from being signed off work, thousands of pounds worse off, I’ve had to move back to live with family and my job is on the line. I’ve seen so many doctors who’ve either told me I’m crazy/implied I’m lazy or just shrugged and said they don’t know and won’t investigate further… plus the cognitive issues are very much at the fore when trying to explain myself, so it’s just a vicious cycle.

But that’s how I came across Eagle as the potential diagnosis. I went back through everything with a fine tooth comb…

Both my MRI scans show compression of my IJV’s. MRI isn’t the best for visualising bone but then I remembered the CT sinus scan from private ENT and requested those images. Lo and behold, the distance between my C1 transverse process and styloid on the left is 3.5mm and 5.9mm on the right. I’ll do another post after this with some images from my scans.

If I take sumitriptan as prescribed for ‘migraine’, it causes cerebral arterial vasoconstriction - my right IJV becomes prominent as this causes venous shunting, but my left IJV is never palpable.

If I lean forwards, clear fluid runs from my nose. Particularly when the headaches are worst, I have small amounts of wetness in my ears. I never mentioned this to the neurologist as at the time I lumped it with the ‘allergy’ symptoms which he made it clear he had zero interest in and considered entirely unrelated. There is fluid in the right mastoid process on my second MRI, and fluid levels in my paranasal sinuses with signal that’s the same intensity as CSF. As I left that appointment I remember noting the ear & nose fluid as it hadn’t been prominent for a few days before that.

My theory is that I have compression of my IJV’s between C1 and styloids bilaterally, worse on the left. I suspect there may be thrombosis of my sigmoid/transverse sinus on the left which may have recanalized to a degree. My external carotid and vertebral arteries on the left have tried to accommodate additional flow, with the vertebral dissecting and then recanalizing. I suspect the MRI appearances of hydrocephalus but without periventricular oedema is because I have CSF leaks partially compensating.

I have an appointment with Mr Hughes on 22nd April and really hoping this is the start of the end in terms of finding answers and hopefully a fix for this.

Will post again shortly but already my brain is feeling pickled. Appreciate any thoughts or advice people have - I have some specific questions about the upcoming appointment and about people’s experiences if they do also have known vascular complications but I’ll have to come back in a bit.

Thank you all for sharing your experiences and for being such troopers. At some point I’ll also share my thoughts re: patient experiences and the diagnostic journey/how medicine lets people down here. I was already aware of it from my medical school days after I researched the experiences of people with EDS but this process has really highlighted how intensely problematic the NHS system and clinician attitudes can be and one day I want to be able to influence that for the better.


I feel for you being dismissed so much, with your knowledge too! We have seen quite a few members with styloid & C1 processes compressing the IJV, and several have had CSF leaks as well.
I had bilateral IJV compression by the styloids which were a little over 4 cms (I’m short!), so I can sympathise- I had IH symptoms; dizziness, constant off balance / drunk feeling, pulsatile tinnitus, head & ear pressure, brain fog & some other weird and scary symptoms too, never had a CSF leak though… I was lucky enough to find out about Mr Axon on here, & at the time he was researching pulsatile tinnitus, was really interested in my symptoms so ordered a CT with contrast which confirmed the compression. That was back in 2015/16 and after the first side was done the symptoms improved loads. I had the second side done a year later. Unfortunately things have changed and he’s not been able to do as many surgeries and I don’t think I’d meet the criteria for surgery with him now either! So it’s good that you’re able to see Mr Hughes as he’s been doing surgeries for members recently. Are you seeing him privately? It’s crazy when you work for the NHS too!
If you need a C1 shave as well as the styloids being removed unfortunately he doesn’t do this; we’re quite limited with surgeons that we know of in the UK!
I really hope that Mr Hughes can help you so that you can get back to practising medicine, I’m sure you’re a great doctor! Will pray that your appt with Mr Hughes goes well :pray: :hugs:


45F also from UK with a recent ES diagnosis. Debilitating symptoms also, but mine are very neurological, particularly affecting my vision. This has been the worst, most distressing 2 years of my life. You’re not alone.


Ps I’m seeing Mr Hughes on 22nd April. Feel free to reach out to me, as we are obviously close by and on a similar journey. I’m from Reading.


Thank you so much, Jules.

I’m really pleased Mr Axon was able to help you. It gives me hope to hear how much you improved after surgery! But it really does seem luck of the draw for people as to whether they end up seen by the right person at the right time, and then finances/timescales being another barrier - and it just shouldn’t be that way. As a clinician I can appreciate that none of us can know everything, which is why specialisms and sub-specialisms exist, but the system is such a battle to navigate and that’s the last thing a sick person needs.

It’s really weird kind of straddling both sides like this. I’ve had my fair share of patients who are anxious about conditions they don’t have, or have found information online and tried to make it fit because they’re desperate for an answer to their symptoms. The misinformation and fear that came out of Covid really made that worse - but the solution isn’t to dismiss but to spend time explaining, educating and re-thinking what the problem actually is, rather than make them feel bad or crazy or with an ulterior motive… it’s usually the opposite - if a patient comes with their own research and ideas, it’s often because they are highly motivated to get better and get on with life, not because they’re playing the system or some of the other negative judgements that get thrown around.

But yes, it does feel so much worse that I’ve been tarred with that brush. It’s easier for (white, male, middle-aged) clinicians to decide I’m the problem versus accepting that multiple people have failed me - and clearly many others. I’ll say to anyone who’ll listen that I’m not mad that no-one figured this out… it’s clearly complex and unusual. But I am livid at the refusal to listen and keep looking for an answer. Even with colleagues I’ve worked with, I’ve noticed a shift from “let’s figure out what’s wrong, starting at the start” to “which pre-made box do you fit in, or can I force you to fit in?”

Anyway, apologies for the rant! To answer your questions, yes I’m seeing him privately. His next available appointment was at The Chiltern Hospital (Cleveland Clinic was booking into June) so I’ll have to figure out travel too as I now avoid driving unless I have to, and even then only short distances and on days I’m feeling better.

If I need the surgery, I won’t be able to afford that privately as this has taken up my savings already but at least with a firm diagnosis my job might be held open for me to go back to afterwards. If it’s not… I’m not sure I have it in me to fight to return to medicine. In my heart, I don’t want to give it up, but this has really shaken my faith in both the system and individuals. Hoping to get this sorted first then cross that bridge as/when.

I’m really hoping my C1 doesn’t need anything doing to it. I have hypermobile joints and have had several axial loading injuries over the years (fell off a balcony when I was 17, ‘scorpioned’ snowboarding several times, whiplash as car passenger as a kid and once as driver in adulthood) and my CT shows C1 isn’t perfectly aligned on C2 so there’s probably an element of instability contributing… but I know that’s a whole new can of worms and that Mr Timothy is one of the few options (and I just can’t afford it). My styloids aren’t actually massive - around 3cm each - but they’re an odd orientation and go almost vertically down from the mastoid process. This is one of my concerns re: Mr Hughes, that he won’t deem them long enough to be problematic even though the space is clearly super tight.

Sorry, I’m wittering now - getting my thoughts out concisely and coherently is something I struggle with now but I hope I’ve not bored or confused you :laughing:

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It is so distressing, I’m so sorry you’re going the same. The number of times I’ve just hidden away and bawled my eyes out because I feel like I’ll never get my life back… and then cried harder because it feels like indifference and resistance is all that’s out there. I’ve been on the brink of giving up so many times in the course of this journey.

Do you mind me asking where you’re seeing Mr Hughes? My appointment is at The Chiltern Hospital - of all the places he has clinics, it’s the furthest away but was also next available. Given they’re on the same day I’m guessing the same or close by? I’ll pop you a DM tomorrow in case they’re close in time/place and you fancy grabbing a coffee and swapping notes x


I’m also going to the Chiltern one. My nearest would’ve been Slough, but I took the earliest available. Do message me if you’d like to. I am near Reading. It’s a tough journey and would be happy to support each other if we can.

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I meant 29th April… a week after you!

This is a very insightful & provocative statement, @inky! This is the way ALL doctors should manage their practices & patients. In past times, it was the way more doctors handled their practices. My father was a doctor (OBGYN) who made house calls, was often out in the middle of the night attending to a baby delivery, & had amazing surgical victories because he cared about every one of his patients. My parents’ marriage didn’t make it because he was so devoted to his practice, but he made a difference for hundreds if not thousands of women over his 50 year medical career. My brother-in-law is a pediatrician & has been for 42 years. He has the same attitude toward his practice as my father did. I’m not sure what’s happened or is happening with doctors in current times, but it seems there is a loss of compassion & patience in working with patients who have difficult to define health challenges. It’s very disheartening as you & so many others have experienced. Caveat - there are still “good” doctors out there, but it’s like a treasure hunt to find them.

I will pray that Mr. Hughes won’t dismiss you but will make a decision based on symptoms not styloid lengths.

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You didn’t witter at all, and it’s really interesting to get your perspective as you’ve seen it from a doctor’s perspective as well as now a patient’s…
If you suspect some CCI, we’ve had discussions about this with UK members, several have been to see Iain Smith at Newport Chiropractics:
There’s lots of info in this discussion:
General ES diagnosis advice - General - Living with Eagle
It might help you with your journey & thinking about whether styloidectomy will be enough or whether there is anything which needs doing with your C1, although obviously will be more money, but it might save money in the long run?

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Sorry to hear of your health:medic struggles.

If you have imaging showing compression of JV at C1/styloid do take that with you as it will help persuade him to help you. I took screenshots from imaging and printed as photos/also had on phone.

I’d try to get his private Secretary to order copies of relevant past scans so he can review with you/afterwards if wants to. He is so busy it’s important to focus his attention on critical factors at outset. I take a list to help me.

As Hepworth says it’s not just styloid length, it’s trajectory/thickness etc. to me it’s just basic common sense if imaging shows JV is compressed by bone.

The hydrocephalus teams at UCLH QS may help you ( with urgent GP referral /unless you have already seen them). They won’t do styloid but they may help with diagnostics for free. They sent me to Axon for styloid but he was no help at all. Private consult at outset is one option to consider as modest cost.

I found Neurologists to be very unhelpful and stuck following their “Migraine treatment pathways”. I tried Neurosurgeons instead who seem to grasp issues better.

Anyway enough from me. Good luck. D

Ps. My advice - Try to focus on your health & not your career now. I had to stop my career as lawyer. But if you don’t focus on getting back health as top task then any quality of life (including professional) is lost.


Good morning and good luck on this tortuous journey. I won’t go into detail as I’ve posted on here before but being concerned about the physio not having heard of ES et I researched and came across a couple of good papers and ended up emailing one of the authors and sending him a couple of screenshots of my C spine CT with contrast.

The answer back was that my left IJV is severely dilated and compressed and to get a vascular opinion ASAP. Funny that Mr Hughes and the radiologist never mentioned or saw it, the styloids were not reported on either and no replies to any communications……

Meanwhile, even the private vascular appointment is 90 days’ wait. Every appointment is 9 mths, 1 year or refused by the NHS yet they deny any age or sex discrimination.

I hope you get some answers but when a professional can’t be heard, what hope is there for anyone else, in any speciality!


So frustrating for you @Mcwelly , I hope that if you see the vascular surgeon they’re more helpful than the other doctors you’ve seen :pray:

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I’m very sorry you’re still struggling to get a proper diagnosis & proper medical care, @McWelly. Please let us know how your appointment goes after you see the vascular surgeon. I can imagine you’re very discouraged. I don’t know why Mr. Hughes missed something that is so obvious to another doctor.

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Thank you @Isaiah_40_31 - I believe that he didn’t even look at the scans! The Ct with contrast was supposed to discount or confirm ES but failed to even mention their existence, let alone anything else relevant to this. To date, neither JH nor the radiologist have replied to my emails and phone calls!

I now have another long wait to see a vascular surgeon! :disappointed_relieved::disappointed_relieved:


I would think that getting another appointment w/ Mr. Hughes (w/ another long wait :rage: to see him) & taking in the research paper & report you have from the doctor who co-authored the research paper would provide you with ammo for your case. You could also request that Mr. Hughes go over your scan(s) with you to validate why he doesn’t think you have a problem (that would allow you to know he’s actually looked at them).

Self advocation can take being firm & not taking NO for an answer which is hard when you feel awful. Do you have a friend or family member who could help you advocate for what you need so your stress level is reduced which may also help reduce your symptoms?

Thank you, yes I agree with you but I can’t face trekking up to London to be ripped off again, I’m too exhausted now to be honest, I have a GP appt tomorrow morning as still unwell after yet another course of antibiotics, my body is protesting and I’ve had to start taking omeprazole again. I just haven’t got the strength anymore, sorry xx

I can understand that you’re exhausted with it all right now…I don’t know what the complaints procedure is for private consultations, maybe at some point you might feel up to that :confused:

I’ve just emailed him again, reiterating everything I said before, plus the images and support by the responses from Vince Kabbaz. I think he and the radiologist have a duty of care?

Next step I suppose is to see if the legal dept at my Union’s medical neg might take it on? I’m a retired member but am covered for this. It’s not a route I want to take but I’m being sidelined here and can only think it’s because I’m not a nice, easy, young case?

Thank you all. PS my family are not really supportive, 1) they’re bored with it, 2) they can’t see how anything can have been missed after all the scans and 3), still going down the stress/anxiety route - I’m not anxious but I am very angry and despondent. You will all know how so called good friends quietly drop you when you’re chronically ill. True friends remain true xx



Have you tried a good (they’re often expensive) prebiotic & probiotic which will help reinstate your gut flora which the antibiotic has killed off? That might help you more than taking an anti-acid like Omeprazole which is treating symptoms not cause. One that’s not too pricy & is OTC but has to be asked for at the pharmacy counter in the US is Lactinex. It comes in powder or chewable tablets which taste a bit like malted milk powder to me. They do contain lactobacillus so wouldn’t be good if you have a milk allergy. There are many others you can buy at almost any pharmacy, grocery or natural foods store. A drinkable version is available at many grocery stores in the US. One trade name is Yakult which was the original one, but there are many others now.

I’m very sorry to hear about your family & friends bailing on you at the time when you need them most. That’s so awful of them & leaves you all the worse for their lack of support. You know we’re here rooting for you & will uplift you however we can through this forum. :hugs:

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