I’ve been lurking on here for a month or so and thought I should introduce myself properly. My name is Alex and I live in the UK. I’ve been ill for around 4 years now, previously healthy. I think I may have vascular Eagle’s. Primary symptoms are:
- POTS / Orthostatic Intolerance
- Headaches and head pressure
- Brain fog and difficulty concentrating / feeling woozy in brain
I have had a CT Venogram and catheter venogram with Dr Higgins who diagnosed me as having bilateral jugular vein compression between styloid and C1. He thought it likely that the C1 is a significant culprit, and thought I would need a styloidectomy and C1 resection on the right side, possibly left as well if necessary. More tests are required with Dr Higgins before Mr Axon will be allowed to operate.
Unfortunately, as some of you know, things are pretty stagnant with the Higgins / Axon team at the moment so I am seeking alternative routes. My hope is to find someone in the UK who will remove one or both styloids to see if that gives some relief. (Other, less desirable, options are to seek out surgeons in Europe or the USA).
I have a few questions, if anyone is able to help with any of them I would be very grateful.
Does having a styloidectomy via the external route prevent a future surgery on the same site to shave C1, perhaps due to scar tissue or something?
Mr Hughes seems like the most promising UK option. Does he use the external route for surgery, or intraoral only?
I searched on the forums here and couldn’t find much but would love to hear any experiences of Mr Hughes or the other UK surgeons: Mr Ken McAlister, Mr Michael Saunders, Mr Mike Rothera, and Mr Rogan Corbridge
- Has anyone had fatigue as a primary symptom that resolved following eagle’s surgery? I have read many studies about Vascular Eagle’s / Jugular Compression and fatigue is rarely (never?) listed as a symptom.
I include some images from my scans in case it is useful. Many thanks for reading
Hi, I have had styloid removed to skull base by Mr hughes. He uses external approach and incision is made in neck crease. I would have no hesitation in recommending him to you, he is a highly skilled surgeon. I have listed his contact details on earlier post.
I agree Mr Axon delays etc are now an issue.
I saw Mr Corbridge- he does not operate to remove at skull base so fine for ES but not VES patients. Don’t know about others you list.
I have both my jugular veins decompressed. First one was with Neurosurgeon mr Jake timothy at Nuffield Leeds. He trimmed my C1 tubicle & cut styloid. He makes a very small incision in area behind ear so it does not mean same area is being operated on twice (ie. not neck incision). But he does not normally touch styloid just does C1 trims.
Not sure if I answered all your qus but hope that helps. Good luck in finding help you need soon. D
Ps. So on your fatigue question I’d say (based on my own experience) that when abnormal fluid (likely blood) gets trapped in your skull (due to Jv compression) you do feel very sleepy/fatigued. I can see on your scans you have white areas just inside your skull around your brain , which is maybe trapped fluid. After JV decompression I learnt that I could reduce sleepy feeling by lying down so JVs opened and abnormal trapped fluid reduced and Sleepy feeling goes away. Only my experience & not a medic but maybe that’s why. D
I’m so sorry for your plight & for how long you’ve felt so bad! @PatientD has given you some great information about Mr. Hughes.
As far as fatigue being a symptom of ES, ABSOLUTELY!! Many, many of our members have suffered from fatigue as an ES symptom & it has gone away after surgery. It can take awhile though as ES surgery recovery is a many month long process for most people. We blame it on the nerves for being slow to recover, & of course, if vascular tissues are involved, it takes time for them to “spring back” into proper function.
I hope you’re able to get some real help soon!
Hi, so will try to share a few tips that helped me while JVs compressed & awaiting help. You can maybe try one at a time to see if helps.
Try sleeping upright, then your body will use your spinal drainage system and not use your compressed JVs. Hoping your spinal drain system (that we all use when upright) is working ok. There are good tips on this site about how to sleep in more upright positions.
Try to keep pulse rates low and try to keep cool. The faster your heart pumps the more blood is circulating and the more your head may struggle to cope.
Consider getting a Viatom ring (c£150 Amazon) to record your oxygen and pulse overnight on your mobile phone. If it shows significant desaturisation (up to 5 drops over 4% ph is “normal’ limit), then hiring a portable oxygen concentrator to reduce overnight desaturisation may help brain get more oxygen. Brain not affected below 80% desats.
Try to get referred to Queens Sq London where national neurological hospital is based. Maybe your GP can help with this. I paid to see Mr Lawrence Watkins in a private consultation and he has been an invaluable source of knowledge, logical advice and calm for me during difficult times. He did my ICP Monitoring & Venogram for me at Queens Sq and so has seen Neuro impact of JV compressions.
We are all different but I hope something above may prove helpful. I hope you get the help you need soon. I have been in your shoes and it’s tough. Take care and good luck. D
Thank you both so much for your thoughtful and helpful replies
It sounds like Mr Hughes should be my next step, unless you think there is some advantage to seeing Mr Watkins first?
Funnily enough I have tried all of your tips in the last 12 months or so, mostly in the vein of trying to understand and tackle my POTS. Sleeping on an incline and keeping cool have both certainly helped, and I actually bought a Viatom monitor only last month! Oxygen saturation seems to be fine for me.
Yes I think Mr Hughes visit is best next step.
But still think about gP referral to Queens Sq as NHS wait list is long & they know more than most how to help Neuro in uK. D
It’s so frustrating in the UK at the moment with getting treated, so I feel for you! If it’s any consolation, Australia & Canada are even worse!
Re the other UK doctors on the list, we do always suggest them, but other than Mr Corbridge who doesn’t seem to be doing many ES surgeries either, & Dr Hughes who @PatientD has given you info about, nobody seems to have mentioned them on here!
I second all @PatientD 's advice for IJV compression, sounds like you’ve tried lots though! I had bilateral JV compression & had alot of fatigue & brain fog; this has definitely improved following surgery.
I hope that you can start moving forward with treatment soon!
Hi @IJVCompression ,
I have been diagnosed with ES by a local ENT surgeon who attempted oral ES surgery but he aborted the op after removing my Tonsils. After that episode, he referred me to Addenbrooks but Mr A is saying he doesn’t think I have ES because I don’t have severe throat pain,although I do have all the other sympoms. Mainly Tinnitus and Ear pain and a constant Headache. Its ruining my life.
Have Addenbrookes mentioned ES to you ?.
As far as Fatigue, I get that as well but I was diagnosed with CFS/ME many years ago but obviously being in constant pain and having ES or something similar is fatigue inducing anyway.
Unfortunately I came to a dead end at Addenbrookes so I am looking for help like you. I too am now considering Mr Hughes. He seems like a good bet.
All the Best. Sparky.
Hi, so looking again at your scans you posted earlier it looks to me like on one side your styloid may be main culprit fir your JV compression, but on other side looks like C1 May be causing worst problem? Important you identify what will be best way to help each side and which order to operate on first. Based on my own experience do one side at a time and choose side offering best drainage gains first. D
Hi Sparky, thanks for your response. I consulted with Mr Axon and he basically said that unless I had pulsatile tinnitus there wasn’t much he could do for me. He said the fact that my main symptoms were headache / fatigue / POTS / brain fog meant that I didn’t fit his patient profile and he wouldn’t be able to perform surgery without further investigation from Dr Higgins. I started the process with Dr Higgins but he seems to be halted indefinitely. Mr Axon didn’t mention eagles specifically but did say my jugulars were “impressively” squashed
Are you thinking the one on the left side of the image here? If so, I believe that is my right IJV, and I agree it looks like removing the styloid would allow it to spring out towards the top side of the image. This bodes well because when Dr Higgins did a full CT Venogram from the head to the heart it showed that my IJV system is right-side dominant.
I didn’t get a copy of my CT but they look similarly squashed as mine did, so frustrating that Mr Axon can’t help, just getting the styloids out made a massive difference to me, hopefully it’ll help you too, if you can get surgery!
If it helps you get the surgery you need, then next time just say you have PT. not viewed Axon video as so long but think only some types of pT can be heard by others. Up to you but I think axon is tied down with slow checks at Cambridge now so best to move on. D
haha yes I did consider saying that I experience pulsatile tinnitus but it seemed a bit crazy to lie in order to get surgery which may or may not help me!
Hi @PatientD, I have an appointment booked with Mr Hughes in early October and am preparing for it now, trying not to get my hopes up…
Do you have a feel for how much Mr Hughes wants/needs you to have pulsatile tinnitus as a symptom?
(Apologies if I’ve already asked you this, I have a funny feeling I have but I’ve searched thoroughly and cannot find it anywhere).
Hi I don’t think Mr Hughes is very hung up on PT topic, unlike Mr Axon. In fact we never discussed PT at all. We did talk about JV compression and fact that in my case I could not turn my head even slightly without causing large pulse spike/big drop on oxygen levels shown on Viacom data. If your styloids are compressing your JV I think he will help you. I did tell him he may be one of only ENT surgeons in UK who can remove to skull base & that other patients needing help may follow soon. Good luck
Your symptoms are very similar to mine, such as POTS, head pressure, brain fog, headaches and fatigue. These are the core part of my worst symptoms. Do you have an almost constant overactive sympathetic nervous system?
As briefly described in my previous post, if you want a highly regarded surgeon for styloidectomy, then Dr Heim is your man. He’s done roughly 120 surgeries, doesn’t get a dime for the surgery as he gets a yearly wage, so there’s no real financial incentive for him to try and get you to come to see him for surgery. He takes into account any fibrous tissue or nerves that might be affecting the jugular vein.
Here’s his instagram page, I think you’ll find it quite an interesting read at times - PD Dr. Nils Heim (@all_about_eagle) • Instagram photos and videos
Argh yes, Dr Pulsatile Tinnitus Axon. It’s odd that he has this as his first line of defence at dismissing certain people who have genuine eagles/vascular eagles syndrome. So if a patient doesn’t have bad enough PT but every other core symptom under the sun of this syndrome, it’s bon voyage!
Not sure about the overactive sympathetic nervous system. My partner does make me “jump” easily these days and I do feel kind of anxious or stressed about small stuff from time to time but not sure how I would know whether my nervous system is overactive?
Do you know if Dr Heim removes the styloid right down to the skull base?