I’ve posted a few times on the forum and am pretty certain I have ES. The question now is how to go about getting diagnosed.
I have an appointment with a GP on Wednesday, and my initial plan was to get them to refer me to Dr Axon for a private consultation.
Having looked it up here, though, it seems more complicated than going to him, getting a CT, getting diagnosed, and having the surgery. There seems to be a problem getting surgery under the NHS after having had a private consultation, and having no idea what it would cost privately, I don’t want to shoot myself in the foot going for a private consultation and then having to pay out of pocket for the surgery.
On the flip side, who knows how long, if It ever even happens, It would take for me to be referred to Dr Axon through the NHS. I have a hard time believing I’d be able to convince them about ES and my need to see a specific ENT if I wasn’t paying for it myself, and then there’s the waiting time.
How do you think I should play this GP appointment on Wednesday? Because I’m confused about what I need to do to get the ball rolling with this.
You could take with you info about ES to show your GP in case they’re skeptical, & ask for a CT- I’m not 100% sure if they can send you for one in the UK, or if you’d need to see a consultant first, but that would be a waste of time as then you’d have to wait for the consultant appt, wait for the CT & wait for a follow up to get the results, so you could push that angles with your GP…if the GP won’t send you for a CT, you might be better off asking to be referred to Dr Jonathan Hughes at UCH London: Mr Jonathan Hughes : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk)
I don’t know what the wait is for NHS appts with him, otherwise @PatientD has seen him for surgery recently privately. We hadn’t heard too much about Dr Hughes until PatientD had surgery, so although his name was on our list, we didn’t know if he’d done many surgeries.
You’re right that it seems iffy whether you’d be able to get surgery on the NHS after private consultation, we’ve heard differing things. And Mr Axon’s wait is very long, plus as you’ve probably read, there seems to be strict protocols & restrictions on whether he can do surgery for ES now
Hope this helps & you get somewhere on Wednesday!
There’s info on being an advocate for yourself on here too, have a read of that if you’ve not already, here’s a link: Latest Patient Self Advocacy/How to Self-advocate and Be Heard topics - Living with Eagle
Hi, another thought is to get diagnostic help from National Neurological Hospital in Queens Sq London but again nhs waiting list is long & you’d still need ent surgeon to do your surgery. You did not say if you have normal Eagles or vascular version. If normal Eagles you could see other ent surgeons. My gp sent me to axon on nhs but not even had initial consult yet. ask gp to mark referral as urgent not routine. Once seen gp you could see someone privately & self pay then decide if will wait on nhs or pay. Good luck. D
@Jules thanks a lot for another detailed reply yet again.
Regarding Jonathan Hughes, I presume would be quicker than trying to see Dr Axon, whether it be privately or NHS? Is it possible that the GP would be able to refer me to Hughes through the NHS the in that case?
I’m also planning to have jaw surgery at some point for another issue. I don’t have a planned date yet or anything, but having consulted with a maxillofacial surgeon about upper and lower jaw recession, it was indicated that this would be a good choice for me.
I’ve known I’ve likely have ES for about a year after having mild symptoms with it for several years and then being able to feel the styloids in my tonsils (one side, the symptomatic side, worse than the other).
Given my symptoms were mild I initially decided to just leave it for now, but having learned I might also have some mild vascular issues, (some ear whooshing when sitting up fast after laying down) coupled with the fact I want to have jaw surgery to which ES then would need to be identified, I realised I needed to get it checked out.
My plan was to determine what was going on by seeing Dr Axon and getting a CT (which I’d need anyway for jaw surgery) and see if I needed to first have surgery for ES.
I just feel it’s going to be so difficult articulating stuff the the GP, but as you say, If I take some info with me that should be easier. And thanks for the link, I haven’t read through it before!
I am having problems with site when members direct message me. When I try to reply I just get an error message on iPhone. But I am able to reply here on main site. Trying to figure out if is an issue at my end or if is something to do with how site is now working. Don’t want other members to think am not replying on purpose. Any advice welcome. Thanks. D
I sent a message to ModSupport @PatientD. Someone will either contact you directly or will give me an answer that I can pass along to you. I’m sorry you’re having that problem.
Thank you. So today I heard that mr Hughes can operate at Cleveland on Nov 18, which is soon, to remove left styloid. Not looking forward to another op but at least I get some recovery time before Xmas.
He asked my GP to refer me urgently to his NHS practice at UCLH which happened today, which was kind of him and will help in future.
Have asked Queens Sq about cost/timing for a CT scan with contrast & rotation so I can decide whether to do that now or later. Mr Hughes said won’t change what we do so no need to scan now unless want to.
I did have a worrying bad brain event last night, due to trapped fluid I think, so will factor that in as think about scan topic. Feels like I am playing a game of roulette with my brain at stake still. Not a great place to be. D
I got in contact with the people that would be doing my jaw surgery in the future. You need to have a 3D cone beam CT scan for that.
I asked them about it and they said I’d just be able to come in and have that whenever. It would cost £350, and obviously I’d bypass the hassle of having to explain to the NHS why I needed one as my surgeon would arrange all of that.
As I understand it, though, the surgeon doing the ES may want my head in a certain position and to use contrast to test for vascular issues? Or maybe the positional thing is for people who get the vascular symptoms when their head is in a certain position? - I don’t have that, it’s just occasional whooshing if I quickly stand from laying down and it only happens sometimes. I’ve tried putting my head in various different positions to see if it triggers it but it doesn’t.
If there does need to be some specific way of doing it, though, then having the CT with the maxiofacial surgeon my not be appropriate, and I’d be better doing it the other way around: getting the CT done to diagnose ES, and then using that same CT for the surgeon planning my jaw surgery.
Obviously I don’t want to have two CTs - I’m concerned about the radiation from just having one, so it’ll be important which way round I do it. I’d imagine it would definitely reduce the hassle to have the CT with the jaw surgeon though rather than trying to convince the GP for one.
We have had quite a few members in the past who’ve had the cone beam CT & have been diagnosed with that. As for your head being in a certain position, I’m not sure that alot of radiology depts would do that, especially NHS ones, & as you don’t seem to get the pulsatile tinnitus in certain positions, maybe you don’t need to worry about that. Mr Axon does like the scans with contrast, and from the top of the head down through the neck, whereas lots of the scans you see on here are side view. I don’t know if Dr Hughes has a preferred way though.
I would think that the maxfac surgeon probably also has his preferred way of having a CT done, so might be best to get the cone beam one done & hope that it’s okay for the ENT as well?
That’s a pretty good price for the CT; my husband paid £500 for a head CT last year!
@PatientD - Your experience with the doctors you’re seeing sounds so much better & more efficient than what many of our members are experiencing especially in the UK. I’m so glad for that. Really great that your surgery is in mid-November rather than later. You should be feeling ok by Christmas.
I’m going to send you a private message regarding your struggles w/ private messaging for the purpose of seeing if you can reply to me using the info I give you.
Hi, so wanted to talk about jaw surgery to see if my experience can help you, before getting to Eagles stuff.
I had jaw surgery in 2017 (right jaw joint deranged) and have spent hundreds of hours with the dental/ jaw specialists before I got to Eagles topic.
So don’t want to pry but why have they told you that jaw surgery is necessary? Can you share who is planning to do the surgery for you? Do you know why you have got jaw issues that have developed?
Have you tried using a guard type yet to relax your jaw and manage any bite problems you have first? After many jaw guards I believe the Tanner guard type on lower teeth is probably best, it can be adjusted as your jaw relaxes to get your bite right. Sadly in uK is no consensus between that profession on what does/does not work, but that is my painful, expensive and hard earned conclusion. Guards on top teeth are more difficult. Don’t rush to jaw surgery without seeing if right guard can help you first. Jaw surgery meant I had no functioning bite after, which is difficult and I think it made my Eagle issues on right side worse as jaw bone is high up in right ear canal now & causes more compression in that area.
Jaw issues are really tricky so important to get it right. I could not speak after & had to use therabite to get jaw muscles to open again. We have 22 sets of muscles working in jaw/C1 area, so if things get put in wrong place can be very difficult. Don’t want to worry you, just trying to make sure going to jaw surgery is the right thing now for you. D
Also have you tried help from a specialist jaw physio, is one or two at King Edward VIi hospital in london & I know from my max fax surgeon that they have saved some of his patients from having surgery on jaw. D
Hi Isaac, thanks for your message. I agree that medics now involved in my care are really trying to help me even though they don’t fully understand my VES and past instability conditions. But finding this medics group has taken me many years and I have had no accurate diagnostic or meaningful therapeutic help for many years in the past, despite constant engagement with medical and dental profession . So my ill health journey has been a long & difficult road like most other members. I hope the medics I have now found may be of some help to other members trying to find badly needed help. D
@PatientD Hi, thanks for bringing this up. The decision for jaw surgery was kind of snowballed from an initial concern. It began as a cosmetic concern; I didn’t like the way my chin looked and thought it was weak, so I was looking to get a genioplasty done. Having seen a maxiofacial surgeon about a year later, though, I was diagnosed with recessed jaws - both the mandible and maxila. My bite is fine, but after having a sleep study done it was discovered that my airways were very narrow, and that I qualified as a sleep apnea case. Given that this is something that gets worse with age, it was recommended that I have bimax surgery to prevent that, which would also rectify my cosmetic concerns.
You’re right though, it’s a pretty serious decision and not without risks, which is why I’m going to one of the very best surgeons. I see what you’re saying regarding the guards for the teeth, but my issue is a skeletal problem rather than a bite focused one; the idea is to advance both jaws and keep the bite as it is.
Realising I very likely have ES, though, obviously adds further complication that will need to be addressed first. Pretty sure I couldn’t have surgery when there’s that there, even though my symptoms are pretty mild.
@Jules understood, thanks for the info! Yeah, hopefully a standard CT will be enough for the diagnosis - I just really don’t want to have to have two! I can envisage the CT being sufficient to diganose ES, but then having a problem having a justification for surgery without them being able to prove the vascular issue, which would then require another one with contrast I presume.
The vascular stuff is really the thing that worries me. It’s only mild and nowhere near as bad as most of the people I’ve read about on here, but the fact that it’s associated with dementia is pretty scary. The prospect of leaving that alone, even though my symptoms are totally manageable, is what concerns me most.
The one I’d be getting for the jaw surgery would be a 3D one, so you’d be able to rotate the skull in three dimensions.
Ok Understood (mostly). So my lower jaw was affecting my airways. I had a couple of guards that help to pull the lower jaw forward to help open airway. I can send more info on that if helpful. A very large percentage of our brain relates to our jaw and bite and it’s very important to the central nervous system so glad you are being careful about surgery. If you move the jaw then the muscles have to adapt & move too. Our muscles can stretch with guards but best to do gradually rather than in one go after surgery. My max fax surgeon was Peter Ayliffe if that helps. Good luck. D
Thanks, any info on the guards would be interesting to read about, and thanks for listing your surgeon, I’ll look him up.
Regarding the ES, I’m going to the GP tomorrow to hopefully start the process of getting this looked into. As I mentioned in my original post, I was initially going to ask for a referral to see Dr Axon, but having read about your experience I think I’m better of trying to see Dr Hughes instead.
I’m guessing seeing him would also require a referral from my GP? How did things happen with you and do you have any advice further to this? It’s difficult to know how to play it tomorrow. I’m certainly going to go in with some printed information on ES as has been suggested.
