Wrong MRI scan

After having my right Sided ES styloid partially chiseled away last May. I’ve had balanced problems.
The ENT specalist has referred me to a spine specialist as he saw my eagles needed attention in the spinal cranial area.
So a MRI Scan was sorted out in Dec 2019. Saw the specialist recently and I feel i had the wrong MRI Scan as the scan did not show my eagles syndrome only my spine. He said I had thinning on my ride side of my vertebrae. But I was in shock as he now says I have to see the neurologist. No I need a
MRI scan with contrast. I’m going round in circles I saw a neurologist 9 yrs ago. I feel like I’m hitting a really big wall. I’m on naproxen and pregablin there not taking the pain away. The ballance is really bad too.
Has anybody else had the wrong MRI Scan and been pushed from pillar to post as the specialist don’t know anything about ES.

It’s a CT that you need, not an MRI- MRIs show soft tissue, a CT will show the bones, so will show if the styloids are elongated & if there’s any calcification of the ligaments. You need it to be done from the skull base down to the hyoid bone.
In the Doctors Info Section we have a list of doctors familiar with ES- the 2019 one is the current list. I would suggest that rather see a neurologist who may not know about ES, that you try to see someone familiar with it. This is unfortunately common, being passed around doctors! Hope that you get somewhere soon!

Hi I have got eagles on both sides right side is more painful. They did a MRI.scan with dye put in too the blood vessels so the Eagles showed up. I will ask my ENT specialist to ask my spine specialist to do a CT scan of my whole spine. Then he can see what’s going everywhere in my body x x

Thank you very much Julie

Anash1966 -

The most critical area to have scanned for ES is the neck from hyoid bone to skull base. Your vertigo troubles may indicate that you have vascular compression from your styloids. If only a small part of your styloid was removed previously, you need to have that redone, & as Jules said, have them both removed from hyoid bone to skull base. It could be your remaining styloid causing “crossover” symptoms or the side you’ve had operated on wasn’t cut short enough. Crossover symptoms have been known to happen.

A CT scan with contrast will show if there is vascular compression but during the scan your head will need to be in the position that causes your dizziness for the compression to be visible.

If it’s possible for you to travel, you could make an appt. w/ Mr. Axon as he is the most experienced ES doctor in GB.

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Sorry, didn’t notice you were UK! if you were thinking of trying to see someone with more experience, as Isaiah suggested, Mr Axon is the most experienced UK surgeon that we know of, although a bit of a trek for you as he’s at Addenbrooks in Cambridge. If you were to see him, he likes to do his own CT scans, so it would be double the radiation if you had one done & then had to see him & have another one. There’s a doctor on the list in London, Dr Jonathan Hughes also, & one in Reading, but he didn’t seem too keen to do surgery on a member who saw him a little while back. I guess this is a terrible time to be trying to get diagnosed; I would imagine a lot of ‘routine’ stuff will be put on hold…Mr Axon & Mr/Dr Hughes do private work; it might be possible for you to have an initially consultation with them privately but the have the rest of the tests& treatment on the NHS, if financially that’s possible? Of course, if you don’t think that seeing Mr Axon is an option, then try & get a CT done.

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I have been diagnosed for ES. 4 yrs ago I’ve seen Mr Hughes in London. I I thought having surgery nearer to me by Mr Saunders would be better for me. It has eased the pain and tinnitus in my right ear but it now my head aches and balance is awful. X

Getting your other styloid removed will likely help stop your current symptoms. It sounds like maybe the remaining styloid is causing some vascular compression so removing it will allow better blood flow & your balance will improve & headaches should stop & tinnitus will likely reduce or disappear.

I’m glad the surgery Mr. Saunders did for you helped!

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Hi can any tell me if they have found out they have kidney stones and is it related to ES.
I’ve just found out I have a large stone in my right kidney. Still suffering with My ES balance and pain headaches also hit a brick wall with specialist. Back to square one .I was sent to spine specialist he sent me to a neurologist who want to ply me with more tablets x ho well I’m still here x

So sorry that you’re still suffering & now kidney stones…
Metabolic disorders have been suggested as a possible cause for ES, so could be linked I guess. There have been a few discussions about calcification / Vit D levels, etc you could look for.
Surgery unfortunately is the only real cure for ES; it is worth the hassle of travelling if you can to see someone with experience.

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Anash1966 -

Mr. Axon is the most experienced ES surgeon in the UK. As Jules said, if you can travel, he would be the person to see to help you w/ ES.

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Thank you. I’ve been in touch with Mr Saunders secretary and asked if he will refer me yo Mr Axon in Cambridge. So hoping the next step is an appointment to see Mr Axon x



I’m sorry Mr. Saunders wasn’t able to help you. I do hope you can get an appt w/ Mr. Axon sooner than later.


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I’ve recieved a letter from Mr Saunders hes a wonderful man he has sent a referral to Mr Axon. I need a skull base surgeon to take my styloid away. So Mr Axon will be able to fo this . Fingers crossed x

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THat’s good, just hope that the wait is not too long :crossed_fingers:t2: :grimacing:

On 20th November I’m going to Cambridge. All being well. Heres to the next faze .

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Good luck, hope your appt goes well & let us know how you get on…

Fantastic news, Anash1966! Onward Ho you go!!