Hi. Ive just been reading your posts and I am very similar to you with Mr Hughes. I have seen him twice as online consults and he’s agreed to go ahead with a right side styloidectomy the week after you are scheduled in.
I have been told I need to go down to London (live in North Yorkshire) 2 weeks before the op to have my pre op bits done (bloods and ecg) then I’ll meet him face to face the same day. If he’s happy with everything then he’ll operate on the 24th.
He has a really nice calming nature about him when we spoke online and answered any questions I had about it all, which has been reassuring!
I’m also trying to figure out the hotel and travel situation. I’ve decided to not go via train as don’t want to be bumped about, but because parking is going to be a big problem, I think I’ll be cabbing it across the city. Haven’t figured out where to stay yet the night before.
I hope your surgery goes well and you have a speedy recovery! Let us know how you get on.
Hi, great to hear from you.
How did he decide to operate? Do you have vascular symptoms and compression of the jugular or more classic eagles?
That’s interesting, I’ve been told I will need pre op assessment, but didn’t say I would be meeting with Dr Hughes during that assessment?
I’m still pondering where to stay and how to travel. We both have long journeys afterwards! I’m trying to weigh up the pros and cons of car vs train travel still!
I’ve only had one consult with Dr Hughes so didn’t get to ask many of the questions I have now!
Did you managed to speak much to him about the surgery itself and how he does it? Like how high he will try to cut it, will have smooth off the end, will he touch the C1?
I also didn’t ask how many styloid removal surgeries he has done, but I suspect quite a few, especially as you and I are getting it so close together!!
Also, a note about hotels, Cleveland clinic offer discountee dates at a select few hotels nearby… But don’t be fooled, they are not very heavily discounted and most can be beaten with price comparison sites anyway! And they tend to be for very expensive hotels like 8-900 per night!
I’m currently looking at the double tree Hilton and other more budget friendly options tend to be near victoria station.
I asked for the face2face with Mr Hughes as not actually met him yet due to having the online consults, so organised it for the same day as the pre op bits to help reduce the travelling. He also needs to check my mouth as I have what I presume is part of the styloid in it near my tonsil.
I didn’t ask for figures, but he spoke about multiple cases and how they recovered and gave the impression it was becoming a more regular surgery he does.
He explained the operation can take 1-2hrs and would be an overnight stay. He makes an external incision and ‘tunnels down’ to the area where he will look to remove as close to the skull base as possible depending on what he finds when he goes in. I didn’t discuss the C1 as hasn’t been highlighted as an issue with any of my scans.
I have symptoms of vascular eagles but every scan I have never shows it, so for me it’s going to be a ‘fingers crossed’ moment that the surgery removes these symptoms.
Ah that’s really interesting thanks.
When did you confirm your pre op assessment? I haven’t heard anything yet about when mine will be! Did you arrange it with Dr Hughes secretary or the hospital itself? I would kind of like to have a date booked in for it as I already have the surgery booked!
Have you had a CT Venogram then? I had mine with Dr Higgins who gave a vague but I suppose conclusive report that both jugulars were being compressed at C1 styloid level. Didn’t comment as to whether C1 or styloid was more the cause, so I’m having to choose for myself about left or right and styloid Vs C1!
Have you got more symptoms on the right side to choose that side first?
Mine feels all over but I suppose subtly I think tinnitus is more right sided.
Good to hear he mentioned to you about going as close to skull base as possible as that was a question I wish I had asked!
I’m going to see him on 29th about my 2 chunky 4.6cm styloids! Praying he will offer to operate, as I’m am suffering badly. Thank you for sharing your experience! Did they say anything about how payment would need to be made? I need to self fund my treatment, should I get it. Thank you.
Also sorry, another question please… did you already have a CT Angiogram scan done? Or it is as different one he needs? I was going to get one done before my consultation, but was unable to confirm with his secretary which one he’d need. Thanks again!
@Jen2 - vascular compression doesn’t always show up in a CT scan where the head is in neutral i.e. face toward the ceiling. We recommend getting a dynamic (head in different positions) CT scan with contrast when vascular compression is suspected because it’s more likely to be visible when the head is turned left/right, looking up/down or on the diagonals.
Sorry for the delay.
I’ve had a CT scan with contrast which was ordered by Mr Hughes. Prior to this I’ve had an MRI and dental X-ray.
My symptoms are mainly on the right side, though recently my left has just started to give me a shooting pain into my ear every time I eat or drink anything for the first time. My right styloid is 4.6cm and my left is 4.3cm.
My symptoms currently have calmed down on the pain front a bit, but I’m left with a constant buzzing in my body, along with palpitations, brain fog, fatigue and the strangling sensation.
I’ve realised I can trigger my symptoms by lowering my head down and holding the position, so am trying my best not to do this for prolonged periods. At its worst I was in bed and struggling to function because of the pain and many other symptoms.
Re the pre op bloods appointment, I haven’t had this come through yet. They apparently will ring nearer to May!?
I’m unsure re payment as mines through Bupa.
After I spoke with Mr Hughes he suggested scans he wanted me to have done and then this was organised at my local private hospital with me being in the North. Mr Hughes secretary sent the referral to the hospital once we provided the details of which was our nearest place to attend.
Hope this helps 
Hey there.
I paid for a private CT venogram with spire Cambridge which was ordered by Dr Axon at my request. This was head and neck and cost £1000. The scan went from top of head down to thoracic outlet with contrast in the venous phase.
Dr Hughes didn’t order any further scans he was happy with this one and the report I had for it. So not sure if he would order the same type if you hadn’t already had it done.
You could perhaps try to get one before your appointment with him but may be tight on time to get a GP to order one and get it done. My GP did complete a referral for me at my request to have the same scan at Nuffield but by this point I already had one lined up at spire.
Regards payment for the surgery. It can be made in full anytime up to the day of surgery I believe. They don’t appear to offer payment plans etc. perhaps a couple of credit cards with a long 0% period may be a good idea. That’s my plan anyway. At least I should get some nectar points!
On payment topic I advise you start sorting that 2 weeks prior to admission as finance team are not fast.
I chose to pay for my ops upfront by bank transfer. I did not want to be dealing with debt as well as post op recovery.
I did not pay by credit card on admission day, but I guess that is an option for those who prefer this.
I’d chase invoice/bank details for payment or sorting credit card payment before Admission day if can. Last thing you need just before op is finance/admin hassles.
Mr Hughes Secretary at Cleveland is very helpful and can prompt finance team to get their act together. D
On pre-admission tests this is usually a week before admission and is in person as swabs/bloods are taken. You can go to either of Cleveland locations in London.
These tests are very thorough and give you lots of detailed information about your health status. Do register for digital My Chart at Cleveland Clinic and then you will get electronic access to your results as they arrive.
I saw nursing staff but not Mr Hughes during pre-admission testing.
Hope info helpful. D
Thank you for sharing! My symptoms are also very much vascular and I strongly suspect IJV compression. I’m at a point where I am housebound (dizziness and visual issues so bad, probably from IIH). I pray he will offer me surgery too when I go a week tomorrow to see him.
I’ll try get a CT venogram this week at my nearest Spire clinic and will do as you recommended by bringing my laptop.
Good luck and keep us posted!
@Warrick Id also be interested to know how long your styloids are, if you’re happy to share please? Mine are both around 4.6cm and on my 3d CBCT scan look positioned very similar to yours. I’m so scared he won’t offer to operate on me, I can’t tell you how desperate I am to get my life back! Thank you.
Hey, I can’t remember for sure but I would say your are probably longer of around 4cm. Dr Hughes didn’t ask about a measurement of length but commented that my right looked elongated. I think for from it’s shape as it appears to end and then continue, as if a new bit grew, if you know what I mean. He seemed not to find length as important as position, and certainly for jugular veins the length isn’t really the issue so much as the size of the gap between it and the C1. I would be surprised if he didn’t agree to operate, or at the very least refer you for a Venogram, which I would think you really should get before surgery anyway to confirm the physical problem.
I’m abroad at the moment, but when I’m back I can send you more pics and measurements from my scans of you like?
Thanks for the quick reply!
I’m going to try get the venogram this week. I have requested the referral from my GP, but she sat on it as I’d had a non contrast CT a couple of weeks back in A&E. My symptoms are so distressing now, I am literally housebound, so I’m going to just get it anyway.
No rush to comment, hopefully you’re having a nice break abroad.
A snap of my 3D CBCT scans for a nose… I also have one that had a weak kink. If he doesn’t offer surgery I fear I might have a breakdown!
Thanks again!
For anyone interested. I sent a question to Dr Hughes about my upcoming styloid removal surgery, asking if, during the operation he sees other areas of compression on the jugular vein such as C1 or muscle fibre etc which may be the cause of the compression, whether he will be able to do anything such as a C1 resection / removal of muscle fibres.
His response via his secretary was short and sweet. He said he can and he will.
Hopefully a positive!
I appreciate I didn’t pay for a consultation so didn’t expect a long winded answer.
I am more positive that his approach is more open minded with the intention of opening up the jugular vein, rather than simply going in to remove the styloid.
That’s very helpful to know, thanks for that! Would be interesting to find out more if you get the chance to speak to him when you’re in for your op… 
@Warrick thanks for sharing! I’m booked in for surgery with him and have concerns re IJV compression. He offered surgery more based on pain and the size of styloids, but my biggest issue at the moment is insane dizziness! I’ve blacked out several times and have had to stop working today to lie on the floor with my legs up (not really helping, as now I feel like my head’s going to burst). I haven’t had any scans to look at compression, but have a neck ultrasound booked next week (just to reassure myself nothing bad’s going to happen whilst I wait)!