Considering investigating ES further, but is it worth it?

General
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So I’ve posted here a couple of times a few months back. I’m yet to go down the diagnosis rabbit hole and subsequent surgery, but I’m almost certain I have ES. I have the majority of the classic symptoms, and can feel both styloids either side in my tonsil area.

I can also feel the styloid under my jaw on the left side — something I know other members here have also been able to do. Nearly all symptoms are on my left side, but I do occasionally get them on the right as well. The symptoms are as follows, and I’m a 25 year old male:

. Jaw angle pain with occipital muscle pain when doing a chin tuck
. Continuous high pitched but low volume tinnitus
. An increase in the tinnitus loudness when doing the chin tuck
. Tickling in throat/feeling something is stuck there occasionally
. Rhomboid muscle pain
. And of course, being able to physically palpate the styloids and increase the above symptoms when they’re touched.

My constant debate with this disorder is that the above symptoms are really not that bothersome. They can be niggling and annoying, but I’ve had them for over five years now. I could go down the very long process of getting diagnosed, but I came to the conclusion that it wasn’t really worth it — especially having to have a CT scan which I’d rather avoid because of the radiation.

At the time, most members said my symptoms correlated with classic ES rather than vascular, but the more I think about it, the more I am concerned I do have some vascular symptoms as well.

For example, I have had orthostatic hypotension symptoms for as long as I can remember. Again, it doesn’t really affect me, but I do sometimes feel dizzy if I stand up too quickly. Then again, I know several people that have this and that it is relatively common.

More concerning is that occasionally I get ear whooshing. If I’ve been laid flat for a long period of time and stand up quickly, I can sometimes here the blood rushing through in my left ear. I don’t get it any other time other than going from laying to standing, and it doesn’t happen very often even then.

I have also noticed that my left ear feels sort of ‘full’ when I wake up in the morning. It usually goes away within 30 mins, and I don’t have any loss of hearing or anything like that.

So the more I analyse myself, the more I seem to worry that I do actually have some vascular symptoms relating to the presumed ES. Now, when I read about people here with vascular ES, their symptoms are often debilitating, whereas if these symptoms I have are vascular representations of ES, they are very minor inconveniences. I don’t have any of the extreme dizziness, vertigo, headaches etc many members seem to unfortunately suffer from.

Having said this, the prospect of having any vascular symptoms at all is terrifying to me. I have OCD and extreme health anxiety, so as you can imagine, my minds been racing with fears of going to be at night and having a stroke.

As anyone from the UK will know, getting an ES diagnosis is a long, laborious journey, and not being mentally prepared for it, I’d really rather avoid it if possible.

I feel in this constant tug of war in my mind: on one hand, none of this actually effects my day to day life, but on the other, the concept of my arteries being compressed and the potential fatal complications are terrifying. I’m unclear on whether vascular ES can simply be left alone — or whether that judgment call is based on the severity of the symptoms. I’ve also heard vascular problems like that being linked to serious diseases like Alzheimers, so then if I do have it, perhaps it shouldn’t be left alone simply for that reason. It’s so confusing!

I’m not really sure what I’m actually asking with this post — I suppose just some advice? I thought perhaps I could get an MRA scan which reassure me on the vascular stuff without having to go down the ES rabbit hole, but then everyone seems to say you need a CT.

Thanks a lot for listening.

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It is a difficult decision with whether to go forward & pursue testing & a diagnosis; I think that would be pointless unless you’d consider surgery as you’d just worry yourself for nothing!
MRIs are more for soft tissue, so don’t show the styloids very well, that’s why we suggest a CT. You could try & get a panoramic x-ray (I was diagnosed at a dental clinic with that as jaw pain was one of my symptoms)- that would be less radiation. But it wouldn’t help with the worry you have about whether your ES is vascular, & for that you’d need a CT with contrast. Some of your symptoms sound like they could possibly be mild jugular vein compression as opposed to an artery being compressed (there’s info on the differing symptoms in the Newbies Guide Section about vascular ES).
I didn’t have any vascular symptoms initially, & I got some medication which controlled the pain to a manageable level, so I decided to live with it rather than take the risks of surgery, as you’ve obviously done for a little while. But I then had a prolapsed disc in my neck & started getting the vascular symptoms- head & ear pressure, the whooshing tinnitus you describe, headaches, dizziness & some other weird & scary symptoms…so after reading up on here I realised it was likely jugular vein compression & that pushed me to get a referral to Mr Axon at Cambridge & then surgery.
It’s tricky as it sounds like your symptoms are only mild, so you could wait & see if they develop further if you’re worried about the radiation, & your symptoms may stay the same & be bearable. You’re young & they may not worsen, but often do as we age, as connective tissue weakens, which can alter the structures in the neck slightly & be enough to cause more symptoms…given the waiting times for the NHS, if you leave things & then you do suddenly feel worse, you could have to wait for a long time for a referral & testing. (unless you could afford to go private?) Maybe consider a referral for now & see how you feel when you get to see someone? If it was straight forward classic ES symptoms & it doesn’t impact your life too much I’d say leave it, but if you might have vascular ES & if this whole dilemma is making your health anxiety worse then perhaps it is wort pursuing now?

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@Jules, Thanks for detailed reply.

My thinking was that If I get an MRA (as opposed to MRI) which shows blood vessels, that I’d be able to confirm that way whether or not there was any compression.

I thought that even though it wouldn’t show my styloids — and so wouldn’t confirm ES — I would at least know if there was a vascular issue that might need addressing without having to get a CT.

After which I’d either have two choices depending on the outcome: to just leave things alone and deal with the mild, classic ES issues safe in the knowledge that it wasn’t presently impinging anything important, or if it did come back that there was restricted blood flow, that would prompt my decision to peruse surgery.

Would this seem like a sensible approach? Could the MRA even definitively make such an assessment? Having searched the term here, I’ve seen plenty of people have had them, though I know the gold standard is CT.

I suppose, though, it begs the question of why I get the occasional whooshing and ear fullness every morning. It would surely be a huge coincidence that I had those symptoms while having presumed ES, and them not be related.

My worries have been heightened by the implications of compression and Alzheimer’s. I’d be worried that even if the supposed mild vascular symptoms didn’t effect me now, that it would always be in the back of my mind that my brain might be being damaged.

I’ve come across your posts detailing Dr. Axon before, and also your description of it taking 7 months or so from start to finish. If I paid to have a consultation with him, what do you think the estimated wait time would be from that consultation to surgery? Even having paid for a private consultation, is it then a matter or deciding whether to have the actual surgery privately or on the NHS? Thereby accruing a subsequent set of wait times based on either option?

Many thanks.

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LG,
Although I understand your concerns about radiation, the gold standard for Eagles diagnosis is CT scan - I would suggest with and without contrast to cover all your bases. Unfortunately, Eagles is usually progressive and worsens over time. Myself, I would rather know than speculate. Some UK patients struggle in the symptoms and extreme pain while running the gamut of diagnosis and treatment. Better to do it ie:diagnosis, when you somewhat functional and symptoms mild than when you can barely function. In my opinion, the worse it gets and the more you struggle to find the right provider and diagnosis, the more upsetting and frustrating it can be which can make mental health issues worse.
I have that high pitched tinnitus myself. I have the orthostatic symptoms as well and generally run low BPM however I do have ehlers danlos hypermobility, as does my daughter who has severe postural orthostatic tachycardia syndrome. The vagus nerve can cause havoc with the orthostatic systems. Ive struggled with neck instability for years. I have had both of my styloids out and most (?) of the calcifications removed in 2020. My surgeon did not evaluate me for vascular compressions or IJV.

More recently I have had an uptick in neck and ear problems as well as near syncope with my neck in certain positions. I have yet to get a full vascular work up but I suspect I do have some vascular compression and know I have nerve compression in neck and mild cord compression - definitely aging!. I don’t have the whoosing like you but that is indicative of vascular nature. I have had a complete ear work up which does show some mild right sided problems but they are unsure what caused it or what to do about it. Ive recently come across more information about “cervical vertigo” which may explain some of my continuing ear symptoms and ear pain.
Jules has given you some good advice. She knows the UK system well.

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In theory the MRA should show any compression, but only of the arteries, so if it’s the veins being compressed then you need an MRV. I don’t know too much about it, obviously it’s a timing thing for doing the arteries first & then the veins as the dye goes through, but not sure if it’s possible to have both done? Maybe someone with more knowledge can answer that!
I’m no expert, but at the moment it doesn’t sound as if you have bad enough symptoms to be impacting your brain so as to cause damage, although obvs that could change in the future…
I think the waiting time for Mr Axon is now alot longer than 7 months; you may well have to wait that long for the initial appt, then there’s the wait for any testing (Mr Axon does like a CT with contrast, & likes it to be done his way), then there’s a wait for results, & a very long wait for surgery too! You could see him privately, I was told by one member that you can’t do that to skip the NHS waits any more, that you have to have all further tests & treatment privately, but I think one of our recent members was seeing him & then going to have surgery on the NHS. But we have had a couple of members who’ve been denied surgery, it seems there are new protocols & testing which Mr Axon has to do, & a board of doctors have to approve the surgery! So it’s all getting harder :frowning_face:
Sorry, not giving you an answer really!

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@LG18 - If you’re thinking about getting an MRA, you might also want to consider the problems some people have had from the contrast agent, Gadolinium, used to highlight the vascular tissues. In my opinion, radiation exposure from a CT scan poses much less of a health threat. The dye used for CT contrast is iodine or barium based thus less toxic.

Here is a post from one of our members @Cat who has suffered seriously from Gadolinium exposure:


Cat
Mar '19

Red bird:
Have you had any mris done with gadolinium?! I’ve retained a high level of gadolinium some 9 years post last MRI with gadolinium.
since 2014 when Dr Cognetti removed my thyroid (cancer HRAS Codeon 61) as well as my left styloid, I’ve found out I also have the following conditions:
Ankylosing spondylitis, neurogenic thoracic outlet syndrome, and a nerve sheath tumor at C-5-C-6 level as well as a tumor in my throat at the level of thoracic INLET!
In urge anyone who has had even just one MRI with gadolinium to get tested to find out if they have retained gadolinium. Some friends in another support group have also developed all it some of what I have, I think it’s all relative!)
If you need testing info let me know!
Cat
PS:

Gadolinium Toxicity

Gadolinium Toxicity

shedding light on the effects of retained gadolinium from Contrast MRI

I am anonymous patient #3 in both patient studies in above link, I’ve done five chelations so far but ran out of money to travel for treatment. I still have high levels…Cat
In my mind, the risks of radiation from a CT scan (Gadolinium isn’t used for CT contrast, I believe an Iodine based dye is used) is far less significant than what you’d be dealing w/ from an MRA.

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Thanks for the info, Jules.

Sounds like this is either going to be a very long or very expensive process (or both!).

I rang to arrange a consultation with Dr Axon today and was told I’d need to get a GP referral first. She told me the consultation was £250 and she also told me each subsequent appointment would cost £100. Presumably I wouldn’t be having a CT during the initial consultation, and then there’s presumably a large cost involved in actually having the CT.

As you say, what can and cannot be done on the NHS after going down the private track seems ambiguous. I’ve done a quick search in the forum but am no clearer. It seems I’ll have to spend a fair amount of money just to find out that I have to spend more.

In reality, the best case scenario would be to see Dr Axon, have the CT to see if there was any vascular compression, and find out that there wasn’t any (or that which was there was minimal and not really dangerous) and put this behind me as a niggling annoyance.

But then, from what you guys have said it seems likely it may progress and get worse. That and I feel I’ll be permanently fearful that any vascular compression, even mild, may be damaging my brain. It would be worth talking to Dr Axon even just to get his opinion on that.

Whichever way, looks like I’m in for a very unpleasant journey. :frowning:

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Interesting, thanks for this. Guess everything is more complex than it seems!

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My husband paid privately for a CT, it was £500, but that was without contrast, just to give you a vague idea of the cost…

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Thanks, that’s even more than I thought!

What I’m trying to figure out at the moment is how going privately affects your ability to use the NHS in at least some capacity. From what you’ve said it seems quite ambiguous.

Could you, for example, pay to have a consultation with Dr. Axon and get the CT on the NHS? Presumably not if you paid, or perhaps you just wanted things done quicker.

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One of our members, I think @Natty04 who hasn’t been on for a while was told if you went private everything had to be then done privately, but it seems to vary for others, here’s a link to poor @DogLover 's story, NHS surgery was refused after it had been agreed privately, whether that had anything to do with it or whether it was a genuine medical reason who knows:
Surgery advice - have I missed anything? - General - Living with Eagle

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Thanks for the link. What a horrible experience they’ve had. By the sounds of it, I might spend all that money only to be turned away because my symptoms are not severe enough. What a mine field!

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Even in the US that can be a problem, @LG18. Many of our members have seen doctor after doctor, first trying to get diagnosed, & once that’s in hand, trying to find someone to do surgery. Too many doctors who are familiar w/ ES won’t do surgery if the styloid length isn’t “just so” or if certain symptoms aren’t present. There is also the contingent who have calcified stylohyoid ligaments but normal styloid processes. Their plight is even worse as many doctors don’t acknowledge “mere ligament calcification” as significant. It’s quite ludicrous really!

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Hello @LG18
Is was wondering about your rhomboid pain
Does it come go?
I am trying to figure out if my rhomboid pain and rib pain is related to my ES
My lungs are good they tell me even after covid, but I am constantly convinced I have a tumor
The right ribs hurt and I think I have heart trouble
Before finger surgery last week I had an ECG, all good
They listened to my lungs and they were fine
Pre op oxygen 99%
Post op oxygen 96%
And yet my rhomboid pain still makes me think of a tumor
My GP and surgeon say ES has not a thing to do with ES
Only two posts refer to the rhomboid so I was wondering if you could elaborate on the type of pain it is?