UK Newbie!

General
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Hi,

I’ve been having a lot of neck/jaw pain and neurological symptoms (tinnitus plus visuals like tunnel vision,visual snow, after images) and a chiropractic 3d scan showed I have 4.6cm long styloid process on both sides.

I’ve managed to book a private consultation with Mr Hughes, but can’t afford to pay for private treatment.

Has anyone been put on the NHS list via a private consultation with him? Any idea of current waiting times? Or how much private may be?

Currently my anxiety is very high and I’m scared of having a stroke or something!

Thank you.

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Welcome to our forum, @BabzieAM. I’m sorry for your pain & visual symptoms. Your styloids are significantly long so definitely could be involved with causing the symptoms you have.

Internal carotid artery (ICA) compression or internal jugular vein (IJV) compression are the two types of vascular compression most commonly seen with ES. ICA compression produces stroke-like symptoms, TIAs (transient ischemic attacks i.e. mini strokes), intermittent facial paralysis, inability to speak clearly, etc. whereas IJV compression causes visual changes such as the ones you’ve described, brain fog, pulsatile tinnitus, intracranial hypertension (high blood pressure in the skull which puts excess pressure on the brain) & possibly CSF (cerebrospinal fluid) leaks in the brain or sinuses. ICA compression is the type that can cause a stroke so it’s more dangerous. IJV compression makes people terribly miserable but stroke risk is almost non-existent.

Here’s a link to a post written by @Jules that will be helpful for you:

I’m glad you have a private consultation w/ Mr. Hughes. That’s a great place to start. I’m in the US so can’t answer your question about a private pay consult followed by NHS paid surgery, but I do recall reading on here that it’s possible. You’ll just have a long wait for the surgery.

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Hopefully @PatientD can chip in, as she’s seen Mr Hughes privately for surgery, & finally saw him on the NHS recently… here’s a link to one discussion:
Surgery with Mr Hughes London this Friday - General - Living with Eagle
She did post a breakdown of costs for surgery but I can’t find that!
We’ve heard different things about whether you can have a private appointment for a diagnosis; you certainly used to be able to do this, but one of our members was told that you would have to have all following treatment privately if you started down that route, so worth checking maybe with Mr Hughes’ secretary?
I had a 6 month wait for surgery with Mr Axon I think after I’d had CT scans done at Addenbrooks and follow up appt etc, and that was 8 years ago, I don’t know what it is now?!

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Hi Jules, I have been wiped out by dreadful head/chest virus and in bed for last 4 days. I will try to provide more input as soon as I recover a bit. I think Mr Hughes would try to refer to his NHS practice at UCLH or ask your GP to do so. My local NHS Trust will not allow medics to remove styloid near skull base for VES. I am not sure if NHS UCLH would allow Mr Hughes to operate. GP referral must be urgent not routine and to Mr Hughes not ENT generally or you won’t get to see him. Take care. D

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Hey there.

Sorry to hear of your symptoms.

Sounds very similar to me.

I started with headaches and dizziness, developed blurry vision and now need glasses, tinnitus, pulsatile and normal! And now intense head pressure which comes in waves over a few days before improving a bit and then worsening.

I also have jaw / neck pain.

I saw general chiropractor and also Atlas orthogonal, and had an adjustment to C1, unfortunately this worsened my symptoms, but at least that helped me to confirm that the C1 / Styloid area was the source of my problems.

Ive just seen Dr Hughes, and he has offered surgery. No idea the cost yet, but time scales appear to be a few months for private surgery. I asked about NHS and he didn’t give a time frame but said it would be very long as it is not prioritised on the NHS.

If I could offer any advice, I would say, really nag your GP for all the referrals you can get.

Ask to see opthalmologost urgently to check for papilledema or any other issues which may be linked to your problem. (I saw opthalmology, and if nothing else it was reassuring not to have papilledema, but that doesn’t mean you don’t have head pressure! They also discovered posterior vitreous detachment, and diagnosed that I now needed a slight prescription. Wearing glasses made my eye sight much better again and reduced alot of anxiety there, and probably improved my headaches a little.

Ask to see neurology, ask for urgent referrals, don’t accept anything less. ( I got referred non urgent. So I pestered them to upgrade). Also looks at average waiting times for specialist referral and you have the right to choose another NHS trust. In my case, Somerset was 6 months Vs Devon being 12 months. So I told my GP to refer me to Somerset. You can do this for any referral if the waiting time is longer than 18 weeks I believe.

Ask for ENT referral. (I’m my case I had it urgently referred, but initially to audiology. But it was again reassuring and helpful to rule out vestibular causes)

Ask for MRI of brain and cervical! (Can rule out lots of things and bring some reassurance, and eased my anxiety alot, when I had been thinking of brain tumours etc!)

You could consider asking for a trial of blood thinners. I had read alot of discussion, mainly from USA Drs who seems to use these as a diagnostic tool. I discussed with my GP and he agreed to give me apixaban, as he classed it as the safest drug to give me, and saw no harm, despite it being off licence. It improved my symptoms up to maybe 40% (then I had C1 adjusted and got worse!"

Consider asking for amitriptyline also, if there’s nerve involvement it may help?

If you have not had a CT Venogram, I think this would be a really useful thing to have done. I had mine done privately as NHS was taking forever. I had to get to convince my neurologist, but she wasn’t keen. Then I had it privately at £1000, only to receive a letter from my neurologist who seemed to be suggesting she would organise one!

I had mine done at Spire Cambridge and specifically requested Dr Higgins, who is a venous outflow disorder specialist I suppose.

Dr Hughes accepted this scan, didn’t need it done “his own way!”.

Sorry that was a bit all over the place, hopefully it may help a little?

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Thank you so much for replying.

I have had eye tests and have mild optic nerve inflammation, but the same as a year ago when I had a CT, MRI & lumbar puncture (all clear).

I had another MRI recently and that was also clear.

I have a private consultation with Hughes at the end of this month, but I can’t afford private surgery. I was hoping to go on an NHS waiting list. I read that Axon is pretty similar in terms of waiting times.

I’ll ask my GP to also do a referral and to Neurology. I was refused one recently, but before I found out I had ES.

Thank you.

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Thanks for that input @Warrick !
And you too @PatientD , I hope that you feel better soon :hugs:

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Sorry still struggling. I would caution that I am unsure if Axon is doing ops for this on NHS now, but hopefully he is. He has never helped me either on NHS or privately. D

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