Hi everyone,
After some time, I’ve got another appointment on 9th august with ENT (NHS UK) to evaluate my options with ES.
I was diagnosed with ES on both sides in 2016 after complaining about a lump in my throat (was given a CT scan after not accepting that it was acid reflux or anxiety etc)
Last time I went to the hospital (pre covid), I was keen to find out if surgery was an option. Having waited a year for the appointment, their system was down and they weren’t able to look at my notes, the specialist put his finger in my throat and touched the styloid and said ‘yes definitely eagles’ but as the system was down that was pretty much as far as it went. I was told if it continues to be a problem to get back in touch.
I have since learned to live with it to some extent and can deal with the pain but there are 2 things that really affect my quality of life: I live with a sense of not being here (derealisation) which I wonder if it’s related to ES, I’ve seen others on here mentioning brain fog and am hopeful that there is some connection? I don’t feel like I’m really here and it’s more like I’m watching from a distance and I’ve had this for as long as I can remember.
The other is an overwhelming fatigue that occurs from time to time that almost makes my whole body and especially face feel lethargic and tingly. I mostly know when to expect this as I feel the more pronounced styloid shift position in my throat. But it takes away my energy and I can hardly do anything (like today where I’ve been unable to move around much).
I’m hoping that if I had surgery these symptoms would disappear.
In previous appointments, I feel like the doctors didn’t want to progress to surgery or explore anything other than telling me that I have ES and to take some time to see if it persists or gets worse. Do any of you have advice on what I should be asking or saying to have a productive and helpful ES appointment? Has anyone else had similar symptoms that went away after surgery? I really want the doctor to understand that it’s affecting the quality of my life and not feel like I’m dismissed again. Thanks.
Glad you have an appt. coming up. A year is a long time to wait only to find the computer system is down, & there’s no help or advice forthcoming until after another long wait. Very frustrating!
Both symptoms you’ve described seem to come with vascular ES, (IJV internal jugular vein) compression in particular, & some of our members have experienced both symptoms. Of those who’ve reported back several months after surgery, all had some to full resolution of those symptoms. Recovery does take time though as the IJV needs to re-open (sometimes the vein is ballooned after the styloid is removed to help it reopen & in other cases a stent may be required to help it stay open). Often when the IJV is compressed, the C-1 vertebra is part of the problem. The IJV gets squashed between the styloid & transverse process of C-1 thus C-1 can require modification to take pressure off the IJV as well, or sometimes the IJV is moved a bit to the side to give it more space. This scenario is an unknown until the surgeon actually sees what’s going on during surgery. This is why it’s important to see a surgeon who is familiar with ES & experienced with the surgery. External surgery (vs intraoral) is required for successful vascular decompression surgery.
Two bits of advice: Read the new Patient Self Advocacy section on our home page:
Read the two posts written by Jules regarding ES symptoms. Much of the information she provides is backed up w/ links to medical research papers (which should make them more credible to your doctor):
Finally, you’ll need to do a bit of homework & read through, or at least read the abstract & conclusion, of some of the research papers which discuss IJV compression caused by ES. Print out any that mention your symptoms & take them with you to give to your doctor.
You can also click on the magnifying glass icon & type jugular compression or vascular compression into the search box, & many threads will come up on that topic.
I hope you feel good enough to do some reading to help you advocate for yourself.
Good old UK NHS! You’ve had long waits & it’s really frustrating…I had bilateral ES & was diagnosed at my local hospital (I now realise how lucky I was!), & was told that the surgery was too risky. Like you I could manage with the symptoms to start with so was okay with that, but by the time I went for the next appt a year later I was starting to get vascular symptoms & it was not bearable any more. Through this so helpful site I found out about Mr Axon at Addenbrooks & asked to be referred to him- the local doctor was very happy to get rid of me & sent off the referral. I found out through a CT with contrast done with Mr Axon that I had bilateral jugular compression & although the wait was a while for surgery I had that done & felt loads better.
Firstly I’d suggest printing off one or 2 research papers which support your symptoms (there’s one written by Mr Axon & Mr Higgins which mentions jugular compression & that might be useful) and taking that along, hopefully the ENT will listen but not always! Here’s a link to that paper: Dr. Higgins & Dr. Axon : Spontaneous Intracranial Hypotension Complicated by Subdural Effusions Treated by Surgical Relief of Cranial Venous Outflow Obstruction - General / Research Papers - Living with EagleIf they’re not very helpful then I’d suggest asking for a referral to one of the doctors on the list, here’s a link: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Mr Axon is the most experienced, although a trek for you, but does have a very long waiting list now & does seem to be being restricted on which ES patients he takes on.
I hope that you get some help!
Thanks @Isaiah_40_31 and @Jules for the advice and links - the patient advocacy article is really helpful. Printing relevant papers out is going to help too. I’ve got some reading to do
Hi, I have VES & had JV compression. If you have VES then it’s important to get styloid removed at skull base. On the UK doctor’s list Mr Axon (Cambridge) and Mr Hughes (in London) can do this. If you want to use NHS your GP could refer you but is a wait as you know. Some of other uK ENT doctors do not remove to skull base, which is fine for normal ES but not VES. if you go private is still a wait. CT scan with contrast is used to diagnose. Doctors reluctant to operate as they regard skull base surgery as high risk. Good luck and keep going if you need this surgery you will have to persist.
Thank you for your helpful input @PatientD. I’m glad you’ve been able to have one of your surgeries already & have the other one coming up soon. I hope you’ll feel much better when both your IJVs are open & flowing properly again.
So a bit of an update - I had my appointment today - I prepared - did quite a bit of reading and wrote things down in my notepad so I wouldn’t forget. But it wasn’t great. I felt like I was wasting their time as soon as I walked in and it flustered me. I was told many of my symptoms are possibly psychosomatic and when I tried to discuss papers I’d read which suggest some symptoms are relieved by styloidectomy, I was told there was no research on eagle syndrome. It felt like I was having to convince the doctor of my symptoms and my experience. I was offered an intraoral styloidectomy of the symptomatic styloid but it was made clear it is only about 50% likely to help and there’s a big chance it could cause further problems.
I mentioned my styloid clicks across the back of my throat and when it does it makes me very tired but he said most peoples throats click and it’s normal and the fatigue isn’t related to it.
He then moved my throat back and forth and it clicked and he said that’s perfectly normal. I said that that’s not what I mean so I don’t think I explained it very well. He then put his finger in my throat and felt the ES - he seemed to slightly change his approach after feeling the length of the right styloid and he explained that the intraoral approach is pretty simple, just snipping it back not removing it entirely. About 10 days recovery. It’s about a 78week wait.
I’m a bit confused how to proceed. I’d like the styloid a removed/reduced but I’m not sure I was able to discuss it properly and I don’t really know how to weigh up the risks. I’m now left with the question of whether its worth living with the discomfort and pain (which makes me feel anxious but is probably doable) as the surgery could potentially lead to other problems. A bit of a frustrating experience but good to have the option of surgery.
Hi, it is very common for medics to disregard your attempts to describe your symptoms and tell you “it is all in your head”, and for consults to be difficult and frustrating. Don’t blame yourself, that’s just how it is. I try to go in with written bullet points & insist on discussing them. It’s never easy. Very few medics know much about ES/VES & the medics list on this site is helpful in finding them. I would be cautious about intra oral approach as some patients need most of styloid removed & have heard about repeat surgeries. If you need more help then do persist in getting it. Don’t give up. Good luck.
So sorry that after all that wait you didn’t feel listened to properly! So frustrating that this doctor clearly hasn’t read up on any current research as there’s a ton of it, & by UK doctors too. As @PatientD says, intra-oral isn’t the best approach, & just snipping it back may well not be enough to give you symptom relief, personally I’d be wary about proceeding with this surgeon! Can’t believe the waiting time too! I know that Mr Axon has a long wait as well, is there any chance you could be referred to him? BTW, is the doctor you saw on our list? Would you send me a private message with their name & I can make a note on the list if he is on it?
Thinking of you & sending you a hug
Thanks @PatientD and @Jules - it was a disappointing experience and I came out of it quite confused and embarrassed but having had a bit of time reflect, I can see things a bit more clearly and it certainly helps that your responses support what I was thinking - so thank you.
I’m going to talk to my GP about it and see what my options are.
I have an update to my journey with ES…
After having the rather unpleasant and demoralising appointment with an ENT consultant that I previously wrote about above, I asked for a second opinion and specifically asked for a consultant that had been mentioned positively on this forum in the past. Although I was told I could be waiting up to a year for another appointment, I had the appointment in December (so only a 3 month wait) and saw the consultant I’d asked for. The experience was completely different. A very positive and respectful consultation in which I was able to discuss my condition and surgery options, risks, etc. I have bilateral ES, but after discussing it with the consultant, I chose to have surgery on the left styloid (as that is the symptomatic area) via the intra-oral approach with the option of further external surgery later down the line if symptoms persist. It’s the same approach as the previous consultant recommended but I’m really pleased I asked for a second opinion. I’m reassured by having an informative and respectful discussion and in knowing that the surgery will be performed by a surgeon I feel comfortable with and trust. And also knowing that if symptoms persist there is more that can be done. I’m now waiting for my surgery dates which I was told would be about 6months from the appointment date. My left styloid has been increasingly painful recently, but it’s been manageable knowing that it will be out soon.
I’m glad for you that this appt went better! Intra-oral surgery can be a bit of a tougher recovery, so good if you prepare for that, do you know why that approach has been suggested, or is it your preference?
I went into the appointment hoping that it would be external surgery based on what I’ve read on this forum but the consultant advocated the intra-oral route and after discussing it with him further, it made sense to me to try that first. He said it would be 5 days off work. I’m prepared for it to be an uncomfortable recovery.
@Mafre - I’m so glad you had a better consult second time around. It’s so great you are almost scheduled for surgery. I hope the date isn’t too far away once it’s specified. I also hope your symptoms are manageable until then.
As long as you’re happy with the decision & confident in your surgeon that’s good- we’ve had members with good results from intra-oral too. I think he’s a bit optimistic about the 5 days off work though, it can take a while to heal & to be able to eat more solid food afterwards, but we all heal at different rates…
Thanks for your continued advice, I realised after you said that 5 days seems optimistic that maybe I haven’t thought or asked about post operation as much as I should have. In your experience, what should I expect after the operation and is there anything I should prepare for in advance? What is the operation experience for intraoral?
I think at least 2 weeks is more likely…you can search on here for post-op recovery with intra-oral surgery, and also if you google recovery from tonsillectomy as an adult (the tonsils are often removed if you haven’t had them out already), it will come up with quite a few stories- some are quite bad, but it will give you an idea of what to prepare for.
The same things to get ready in advance are the same as for external surgery- a wedge pillow to keep propped up, ice packs to help with swelling, soft food as your throat will be sore & you may not be able to open your mouth too wide, laxatives in case you get constipated with the pain killers…
Here’s a few discussions you could look at: Surgery this week with Dr Bove - Questions - Support - Living with Eagle Intra oral surgery-who has had this who already had tonsils out previously? - General - Living with Eagle 3 Weeks Post Op - General - Living with Eagle
