Looking for some advice regarding getting an ES diagnosis in the U.K

Hi PD, thanks for enquiring.

Unfortunately my GP apt was cancelled for a second time, so given that you said you could actually book to see your doctor without a GP referral, I think I might just do that at this point.

How long do you think it would take to actually see him if I was referred on the NHS, by the way? Would we be talking months, weeks, do you know? As this will factor into my decision regarding waiting again for a third appointment to be referred.

And can I still have treatment with the NHS even if I choose to see him for the initial consultation privately, do you know? Many thanks!

Hi, I don’t know how long his NHS waiting list is. If you go to see him privately he was willing to ask my GP to refer me to his NHS practice. I am on his wait list so if I get any info on timing can let you know. For me am hoping all ops are over now but expect will be follow up help in future. Not good your GP keeps cancelling your appointments. D

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So are there two separate waiting lists I presume? One for scheduling an initial consultation through the NHS, and another to be referred to his NHS practice? And yes, fingers crossed for you!

Thanks :slight_smile:

Hi, not a great expert on nHS systems but I think it’s just a single ENT referral to get in queue/wait list. Then first step is initial consult & then wait for diagnostics &/or surgery. Have a few nHS referrals now but most of them have not yet resulted in a initial consultation after several months waiting. Wait times do vary I think between NHS Trusts. I did have one respiratory telephone consult and one remote pain consult but no real help as a result so far. Due to see eye clinic in person on 3/12. Good luck! D

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Thank you for the reply. I think I’ll probably just book a consultation privately to bypass the wait time and the possibility of another GP cancellation. It’s difficult to know what order to do things in.

I could have a CT with my max fax surgeon which I need anyway before my appointment with Dr. Hughes - the benefit there, I guess, would be that I’d then have that to show him at the consultation, which I guess would speed things up a bit?

But then I’m not sure whether the CTs need to be done a certain way for ES diagnosis or if he likes to have them done a certain way. I certainly wouldn’t want to have to have two done.

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Hi, so scan they use in UK is CT with contrast. If head position is relevant then CT with head rotation and if possible flexion is recommended.

Tbh I doubt max fax scan would suffice but maybe they can talk and agree a combined approach to diagnostic scans.

I don’t know how much scan with mr Hughes costs but did get private CT scan price from Queens Sq for £550.

I agree your GP seems a slow road to nowhere right now. Private will be much faster. But preserve with Gp as you want NhS support in longer term. I write to mine & drop letter at practice when communication barriers exist (which is most of the time). Good luck. D :slightly_smiling_face:

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Hi, thanks for your reply.

I discussed this briefly with Jules; I don’t think the head position will necessarily be relevant for me. I don’t get pulsatile tinnitus because of any particular head position, it’s just when getting up fast from lying down, so I don’t know if any CT variation would be able to detect that.

My regular tinnitus is exacerbated and made louder by certain head positions (such as head tucking or tensing neck muscles), but I’m unsure if that’s relevant so far as having a CT is concerned.

Other than the use of contrast – which presumably is only relevant for the detection of vascular issues, of which I’m not sure is possible in my case – do you know of any differences in how CBCT scans are done for an ES diagnosis vs the usual?

Hi, in uK ves diagnostics seem to be CT with contrast & rotation &/or catheter Venogram.

Nick Higgins May do other tests but have not seen him.

Ent will advise you on scans but if you have pulsitile tinnitus & issues on rapid standing it suggests to me there is a component of venous structure involvement for you from your symptoms. I May be wrong. D

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Understood, thanks. So what I was thinking though was that I could just get a standard 3D CT, which presumably would show the styloids, and go from there? Even if it wouldn’t show the vascular compression. I mean might they operate just on the basis of having the elongated styloids? Or would it be essential to also find out any vascular issues first and diagnose them.

The I’m thinking is that a standard CBCT would physically show the styloids and is something I could use for the jaw surgery, but I’m not sure whether that would be the case the other way around - what you described with having to have one done with contrast and rotation may mean that that scan couldn’t be used for the jaw surgery….but then I guess the same could be said for the other way around, perhaps. So confusing!

My supposed ES is a weird one because as I say, the symptoms don’t even particularly affect me. I’m not in pain everyday or anything, and if there’s any vascular issues it’s likely mild, as all I have is that occasional whooshing.

It is important to know prior to having ES surgery whether or not you have vascular compression. If the styloid process is involved w/ the compression, it should be removed to a point where it is no longer causing or aiding in compressing the vascular tissue involved. A surgeon looking to liberate a compressed vein or artery will examine that vascular tissue after the purported cause of compression is excised to see whether or not the vascular tissue has re-opened. When there is no concern about vascular compression, that extra step is not taken.

You can get a CT scan w/ contrast w/ your head in the position(s) that you’ve noted cause the whooshing sound in your ear(s). If there appears to be compression, doctor may order an angiogram for confirmation later.

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Thanks for the post. The thing I’m struggling to understand is how the contrast element of the scan will even be helpful for me.

My whooshing pretty much only occurs after being laid down for at least an hour and then standing up quickly; how would they be able to simulate that during the CT to have useful data afterwards? I understand if you can simply move your neck into a position to induce it, but I don’t get how they’d mimic it for a CT in my case.

Also, I thought that good ES surgery removes the styloid all the way back to the skull. If this was the case, wouldn’t it pretty much be guaranteed that the vascular symptoms would be solved anyway? In which case couldn’t I just have the surgery as someone with a common ES type, which would inevitably solve the vascular stuff if it is present?

And if the doctor needs to examine the tissue afterwards to see if the compression has resolved post styloidectomy, wouldn’t that mean I need another CT afterwards?

Sorry for the multiple questions!

The question about duplicating your ear symptoms for a scan would be one to ask a vascular surgeon/ ENT doctor. You make a good point i.e. since this is a very intermittent problem, it may not be indicative of anything very serious. It may also mean that having your styloids removed might not change anything if the whooshing isn’t being caused by vascular compression per se. Yes, it would seem that removing the styloids to the skull base would resolve vascular compression that’s up high, but sometimes it’s not caused by the styloids. We’ve had members whose IJV was being compressed by muscle, scar tissue or the transverse process of C-1.

ES is a very complex ailment & some of us have just had to go w/ what our gut told us was the right thing to do. Your best answers will come from consulting with someone like Mr. Hughes who is experienced w/ ES, VES & the surgery to remove the styloids. Getting his opinion should be very helpful.

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Hi, I think you should see Mr Hughes before you have jaw surgery as getting any operations in the right order is important. I know my jaw surgery made my VES worse as it moved my right jaw bone too high inside ear canal (I can feel the bone). Not saying that will be so in your case. Also jaw surgery will seriously affect your jaw & neck area ( I had multiple daily physio with Therabite so could recover jaw opening to speak& eat). So do diagnostics before operations so you know what you are dealing with. I agree lack of upright scans or scans without movement is a big issue. There is an upright MRI in london & Manchester allowing movements but are rare here. I think your jaw scan will be done upright (mine were) but the machine moves, not you. they dont use contrast. Contrast helps medics see your vascular structures more clearly I believe. Hope that helps. D

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Thanks for the post, Isaiah. Indeed, it’s a weird one. I certainly wouldn’t classify myself as having a pulsatile tinnitus issue per sae, as it doesn’t affect me at all really, just something I’ve noticed. I know other members here are in torture with their symptoms - which goes for the common type of ES, too, which also doesn’t really bother me.

I worry that I’ll go through all this stress with tests and appointments, and ultimately be told they won’t operate anyway because the symptoms are too mild! I know members here have been refused operation with far worse symptoms than I have, which must be an awful situation to be in.

Regarding the vascular component, I can’t imagine there’s actually a legitimate way of testing for it using the CT scan - that is if the compression has to be active as the scan is done. Unless there was a CT can which could lie me down for an hour and flip me upright!

Regarding my gut feeling, considering getting an appointment with Dr. Hughes will take some time, yet alone then being referred for a scan and a diagnosis, I feel it might just be better to get my max fax scan (which I could have as early as next week) and just take that to my consultation with Dr. Hughes when he’s avalable.

It won’t show any compression, but then it doesn’t sound like there’s a way of testing for that anyway in my case, though I suppose I’d have to ask. At least if I had the CT, he’d be able to see the elongated styloids there and then, which would take away a lot of the ambiguity.

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Thanks PatientD, yes most certainly. My main reason for getting this investigated was because I knew I’d need it looking into before I had any sort of jaw surgery done.

I think I remember you mentioning before that you too got your ear whooshing/pulsatile tinnitus going from laying to standing. Did you also have other vascular issues triggered by head positions, I presume? Or else you would’ve been in a similar situation to me - with vascular symptoms unable to be identified with the standard testing procedure of CT, contrast, and triggering head positions.

Yes at my worst I got PT on position changes supine to upright and other significant symptoms on head turn (affecting ICP levels in brain) & causing big pulse spikes/oxygen level drops. D

@LG18 - I think you should proceed w/ the Max Fax scan as planned to expedite this whole process. I must say that if your symptoms are tolerable for the moment, I’d wait on surgery until they’re more bothersome. It is major surgery & can take months for recovery. Seeing Mr. Hughes is a good plan, but it’s worthwhile to discuss the option of putting off surgery until symptoms are worse. For some people they never get worse & are tolerable w/o surgery, for others, the symptoms worsen as time passes since the styloids tend to keep growing at a slow rate.

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Guess I am not a fan of jaw surgery if a guard could open your airways enough. Very major surgery if for cosmetic reasons. But your choice. Good luck. D

@LG18 -

I forgot to add that if you proceed w/ cosmetic jaw surgery, it could flare up your ES symptoms. On the flip side, there is a small chance it could help resolve them but the first scenario is more likely.