Unsure what’s wrong with me. Maybe ES?

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Hi all.
I’m new to this group and have discovered it searching for answers. I’m in the UK.

3 years ago I started getting severe headaches. I then got covid and the headaches never went away so I was diagnosed with chronic daily headaches which I still take 50mg amitriptyline for. A few months after that my jaw started clicking. 6 months later this clicking turned into awful mouth muscle spasms. I was put in a soft diet as I couldn’t talk or smile without being in pain. I now have Botox in my jaw muscles 6 monthly, but my last dose (2nd time) hasn’t worked as well. I’ve also developed tinnitus since all these things have been going on. I also often choke on thin fluids- especially if say a fruit was juicer than I was expecting.

Since last sept I’ve had a left sided sore throat (under inhale of jaw by left tonsil. It is tender here and causes shooting/sharp pains). I’ve also had a croaky throat- mostly in the mornings which disappeared after eating breakfast. I’m the last 5 weeks this throat pain has become worse (at times feels like I’m being strangled) and the last 3-4 weeks I’ve had a persistent croaky/breathy voice bar about 4-5 days max. Last 2-3 weeks my throat has started clicking on swallowing and occasionally when I turn my head.

Was seen by ENT via 2 week wait to rule out cancer, who scoped me and said my larynx and vocal cords are normal. It’s effecting my ability to work (due to my voice) and I’ve heard getting a diagnosis in the UK can be tricky. I would consider going private for a CT 3D scan if I’m confident it could be ES. Just not sure what to do or where to turn.

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Hi & welcome to the site!
I’m pretty sure in the UK even paying privately, you would still have to be referred for a CT by a consultant, so that would mean paying for a private consult as well, I don’t know if that is something you could do? It’s such a shame that the ENT you saw didn’t refer you for one!
If you can go the private route, it’s still worth seeing someone who is familiar with ES, as it would be really rotten to pay privately & to see someone who was ignorant about it, so have a look at the doctors list, here’s a link:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Mr Hughes in London does private work with Circle group, so would be the best bet closest to you, otherwise if you can’t see him it’s worth ringing anyone more local to see if they would see ES patients before you visit!
Without a CT you can’t really say if it’s ES or not; the symptoms you describe are all ones that members have had. Sometimes Hyoid Bone Syndrome (where the processes of the hyoid bone are elongated) can cause the strangled symptom & clicking, or if the stylo-hyoid ligaments are calcified from the hyoid bone upwards. So that’s worth looking in to as well, to make sure if you get a CT it does show down to the hyoid.
If you want to go the NHS route, I think Mr Hughes does NHS work, Mr Axon is very experienced but hasn’t been able to do surgeries for members recently (cases are discussed by a team & the criteria for accepting patients for ES surgery seems to have changed), he has a really long waiting list too.
Some members have been able to feel their styloids poking at the back of the throat, around where your tonsils are- if you can feel something bony there, pushing on them gently can cause symptoms. That might give you an idea if the styloids are the issue before you pay out? It’s not a diagnosis but just for an idea…
I hope this helps!

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Yea thank you so much for the really helpful reply.

So externally at the angle of my neck and jaw where you’d feel your tonsils has felt swollen since sept and I can feel something there. The gp I saw said she thought it much be the base of my tonsil. A few months ago I did notice though that my throat, particularly up by the hyoid bone, moved side to side a fair bit on palpation and clicks with this movement (crepitus).

Yes I was aware I’d have to pay for a consultant consultation first and then the CT scan. The then issue is, if it shows anything, can I have the care transferred to nhs? I’m on an ES group on Facebook and someone on there saw/got diagnosed by a Dr Patal in Southampton so that might be an option, but like you say if I’m going to oy, I want to make sure I see someone who knows about these conditions!

Thanks again for the reply!

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We’ve had a few members raise the issue of whether they can transfer their care from private to NHS- you certainly used to be able, but one members was told no, others had seen Mr Axon privately & were going to have ES surgery on the NHS, but then their case was refused by the panel which approves surgery, so the answer is I don’t know!
Would be nice to know about another experienced doctor though, if the FB group think Dr Patel is good?

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@NRuflove has seen Mr Patel, I thought the name rang a bell, might be worth sending a private message about theexperience, it didn’t sound as though Mr Patel was that confident about doing the surgery…

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In Southampton? Privately at the spire? The person I spoke to hadn’t got as far as discussing surgery- only diagnosis. If that’s the case I’ll look at travelling elsewhere but I can’t afford private surgery.

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Here’s a link to the discussion, sorry, I wasn’t able to post the link yesterday, technical issues!
Possible VES - questions - General - Living with Eagle

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Thanks so much x

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@Arn3 Hi again, we chatted via Facebook.

I had been seing Mr Vajramani (neurosurgeon) at Spire Southampton for treatment for chronic migraine/headaches. I did keep telling him where the pain seemed to emanate from and what my symptoms were but he was sure it was occipital neuralgia and treated me for that. It wasn’t until all treatments for it failed (nerve blocks, botox, GON PENS) that we went through my symptoms again and he requested a CT scan of my neck/head. The CT report then mentioned ES so Mr Vajramani referred me to Prof Patel (otolaryngologist) at Spire Southampton.

I saw Prof Patel (otolaryngologist) in early January 2023 at Spire Southampton. He reviewed the CT scan and gave me a physical examination. He agreed that, “ES is a reasonable diagnosis with quite significant vascular elements to her symptoms.”

He said that if it was classic ES, he would not hesitate to operate and resect up to 70% of the styloid, however, due to my vascular symptoms, he doubted a resection would be of any use. We then discussed the probability that there was a vascular impingement causing a lot of my symptoms. If this is the case, he confirmed it would need removal of the styloid from the skull base and this wasn’t a decision to take lightly as the stakes were so high. He agreed to discuss the matter with his colleagues and, in particular a Skull Base Surgeon, who would need to be involved. He said it would take him a while to get back to me and that there would be a lot of tests to complete prior to any final decisions being made.

It is now 7 weeks since I saw Prof Patel. Having spoken to his secretary to ask when I’m likely to get a response, I was told that they are still waiting for the Skull Base surgeon to review the scan.

I am currently self-funding my private healthcare. If a styloidectomy is necessary, my preferred choice will be to ask whether treatment is available within the NHS with Prof Patel at Southampton General Hospital and what the timescales are. If he does carry out the procedure, but the wait time is excessive, I will self-fund the op privately. I will also make enquiries as to whether he has undertaken this op before and what the outcomes were etc.

As soon as he calls me in for a follow-up consultation, I will report back here.

Best wishes.

Nicky

For info, the costs so far were:
Initital consultation with Mr Vajramani (neurosurgeon) £350
Follow up consultations with Mr Vajramani £160
CT scan (Head/neck - no contrast) £576
Initial consultation with Prof Patel £250

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Thank you for providing thorough information, @NRuflove. Very helpful for our British contingent.

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Super happy! Asked my gp this week to referral me to Dr Axon at Addenbrookes hospital (uk) under the nhs (it’s nearly 3hrs away from me so wasn’t sure he’s so it). Said if he can’t send me that far could I be referred to Dr Patel in Southampton. Just received a letter to self book for triage phone call at Addenbrookes hospital! I’ve got a phone call booked for this Wednesday! :crossed_fingers:t2: they help me!

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I hope you’re able to find the right doctor to help you ASAP. I’m glad you were able to get the Addenbrookes phone call set up so quickly!

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