First appointment with Dr Jonathan Hughes

General
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Hi all,

So I’ve just had my initial consultation with Dr Hughes…

I met him at Spire Bushey hospital. He was very professional, kind and attentive, and most importantly a good listener.

I explained my symptoms of head pressure, pulsatile tinnitus, headaches and dizziness, and most importantly, I had my scans ready to show him on my laptop. He viewed them with interest and said they were quite convincing.

He essentially said he would suggest removing the right Styloid, and seeing how things improved. I was quite shocked at how easily he came to this conclusion, as I was expecting to have to fight for him to agree to it! But no, he said my scans were quite convincing enough, and he didn’t feel a lumbar puncture, or angiography / pressure gradients etc were required. The CTV was all it took. For him to agree to operate and remove the Styloid.

I was glad he suggested the right side first, because this was my preference. Only because my tinnitus seems to be worse on the right really. That and the scans seem to show the right is longer, and potentially angled closer to the IJV and I think squashes the IJV more than the left one, although there isn’t much in it. I also intend to do some measurements of the veins diameters to see which looks to be the largest before and after the compression, to try to determine which is likely the most dominant. I guess this would be how to determine a dominant side?

I’m not really sure how to feel after that! It’s been 6 months of dead ends and not knowing what to do, and suddenly after a 20 minutes appointment with a new Dr, I have the option of surgery lined up! It almost felt too easy! And then I over think it and question whether he should have looked into it more deeply before agreeing to operate?!

Anyways, some good advice for anyone wanting to see Dr Hughes, Spire seems to be the cheapest place to see him, and offers a slightly longer appointment time.

Definitely bring a laptop with your scans loaded and ready to show, as, despite my CTV being done at abother Spire hospital, he did not have them available to view.

He has told me he only does surgery at Cleveland clinic in London, as he said, it’s a slightly more complicated surgery so he will only do it there.

He seemed fairly laid back I suppose about surgery, seeing it as an experimental option to see how my symptoms improved. Clearly I knew he would not be able to give any guarantee of improvement, but I’m taking hope from how easily the scans convinced him.

He said the biggest risks were no symptom improvement, or facial nerve damage which he said was extremely rare.

I would appreciate any advice from anyone who has had surgery at Cleveland clinic, I’m thinking logistics, as it’s bang in the middle of London, so no idea how that all works with travel in and out again, hotels, bnbs, family etc! So any advice would really be appreciated!

Thanks all.

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Ctv scan ~2
Ctv scan ~21366×667 147 KB

A snap from my CTV for anyone interested, shows both internal jugular veins disappearing completely between the C1 and Styloid!

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I wondered if @Lababila had their surgery yet? I remember they were scheduled with Hughes in London but had to push it back due to work commitments. Thought they might be able to give you some tips!

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@Warrick - Thank you for the great report about your appt. w/ Mr. Hughes. I hope you can get that surgery date scheduled ASAP!!

A dominant jugular vein isn’t the case for everyone. Some have a dominant IJV whereas for others the IJVs are pretty equal in size (I’m one of those people). I wouldn’t spend too much time trying to analyze yours because they look pretty even to me. If anyone disagrees, please speak up!!

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So pleased that he agreed to do your surgery!
@PatientD has had surgery there with Mr Hughes, she’s posted quite a bit about her experience but I think she’s from the London area so not sure if she would have info on nearby hotels…It might be worth contacting the clinic direct as they must get asked this alot? Here’s a link to one of her posts anyway:
Surgery with Mr Hughes London this Friday - General - Living with Eagle

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Hi, I think Mr Hughes has seen quite a few of our patient group now so is probably more comfortable now about styloid removal to help. He is an excellent surgeon. Do discuss with him how Close he can remove styloid to skull base before op day.

Cleveland is near Buckingham Palace, so an expensive part of London for accommodation. But there are many cheaper areas to stay using cab. I don’t think public transport post op is wise as lots of bugs around and last thing you want is to catch something as recover.

Don’t agree to 2 night stay as you can be discharged on day after op. I went home in car with family member but trip is under an hour for me.

Glad he is helping you. D

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Hi, thanks for your message.

I’m just looking at hotels near by and it’s slim pickings for sensible prices!

I’m a 3-4 hour drive from London so wondering what that would be like In a car the next day. Or whether the train would be more comfortable as less being thrown about?!

Could I ask how many APTS you had prior to surgery? I’ve literally had a half hour consult and he has told me to schedule surgery. Not sure if that means I would literally turn up and see him just before the op, or whether they would mandate any further consultations prior?!

Also, post op, do you need to return to hospital at all? So you have a drain inserted that needs removing?

I’m wondering do I need to stay in London for a week or so for follow ups or just go straight back to Devon after discharge?

Appreciate your advise thank you so much! I’m a bit nervous now that it’s finally looking like surgery! Even though I suppose it’s what I have been working so hard to get!

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Hi, I don’t think you need to stay in London after op but you will be very sore and tbh you will look like knife crime victim so I would not recommend a train. Being driven in reclined position with soft pillow under your head should work ok. But West Country is a long trip.

You will have the drain overnight but they will remove it and dress the wound before you leave post op. You will see Mr Hughes 6 weeks later for checkup.

He and the Anesthetist will both see you first thing on op day to consent you. You can see him before that if book a consult but only if you want to. I would discuss his op plans before the day if I were you, including removal how close to skull base.

I saw him a few times but I had to persuade him to operate and he had to talk to my others medics which took some time.

I hope that is some help. D

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Thanks so much that’s really helpful.

I’ve just spoken to secretary and she has given me a provisional date of 17th may!! Sooner than I thought!

Just bracing for the quote now.

From memory where there a number of bills? Or does the quoted price include everything?

I’m wondering if it’s just the operation price, or if it includes the overnight stay, and pre and post op procedures?

I would like to speak in more detail with him before hand about how high up he can cut off the Styloid, as I want to ensure it removes all the IJV compression! Also if the end is sanded off and smoothed! I didn’t ask him if he ever touches C1 so if he found it was causing the compression if he has the ability to do anything with it during surgery or not. I presume not.

He does appear to be more understanding of vascular compression with the styloids now, as he didn’t take any convincing about it’s probable cause of my symptoms, so that’s good. I was expecting him to be more like Dr Axon and saying “well your symptoms are not really classic eagles”. But that said, he didn’t say much about vascular issues or IIH etc, just that my scans were very convincing and best to remove a styloid and see what happens!

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Hi, the quote you get from Cleveland will include all costs of op/stay etc. brace yourself for up to £7k. Check only one night stay, you won’t need 2 nights.

I can’t recall if had to pay consult fee for 6 week follow up or if included. But that’s minor £ in scheme of things. Take care. D

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Thanks for getting back to me. I had remembered someone, maybe yourself saying around £8k so am hoping it’s around that price and just didn’t know if there would be tonnes of extras on top, but reassuring that it’s usually all included in one bill! Rather than all the extras mounting up on top!

Thanks for all the advice!

Just how painful will It be post op? Will I be able to walk around, move my head etc? Or will I be pretty much immobile for a while?

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They give you pain meds if need them so should be able to manage pain.

Wound & neck swelling is hardest part post op. Do not let nurses give you a fluids bag post op, it makes swelling worse. Sleep upright, it reduces swelling. Take small thermos and get nurses to put crushed ice in it. Suck inside mouth to reduce swelling/inflammation from inside/ continue at home. Consider buying soft ice packs or biggish zip bags to get ice inside a thin soft pillowcase/nurses will help but their cold packs on ward are not effective. Put zip bag with ice/pillowcase or cold pacs on outside if able to help reduce swelling.

Below neck movement should be ok. Our lymph system has no pump and relies on movement to work so gentle movement is good. May be too much at outset to move neck until wound heals at surface but then do gentle stretches to help fluid move.

Further on are other steps to aid recovery.

Others have posted advice on post op steps, and I have shared helpful things too. But if you need more tips sure members can help. D

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Ps. Liquid meds can be given as swallowing painful post op. But you have to ask or you get pills. I took my own liquid codiene as had issues with pharmacy team. Nurses are great but pharmacy is not great on pain meds.

Prepare for soft foods only - smoothies in hospital are a good option. Yoghurts/soups also work. Also for return home. D

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Thanks so much for this advice! Really appreciate it!

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I think to go home on a train would be pretty uncomfortable…not for ES but my husband had surgery at St Thomas’, we got a taxi to the station and a train home & it was pretty stressful due to all the crowds & jostling at the station & the bumpy train…but then driving in London is no picnic either, do you have someone confident who would do that? I only had a 2 hr drive home from hospital after my surgery with Mr Axon, I was a bit spacey but not in any pain…
May 17th is not too long to wait at all, so pleased for you, will pray it goes well :pray:

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Didn’t think about the crowds. Its a long time since I’ve used a train. I may trial it for my pre surgery appointment, and decide which is better. My wife is not the best / most confident driver, and I worry it would be stressful for both her and me driving out of London as carefully as possible, and thinking any suddenly braking may be painful on the neck. I was thinking train would be less bumpy but maybe I’m not remembering it well, so I will definitely try it first!

It feels very soon but that’s probably a good thing as less time to worry myself about it! I would definitely appreciate your prayers Jules thank you so much!

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Maybe using a driver is an option. At least to get you out of central London area?

In case helpful I try to attach image of ice bag I tried with zip bag of ice inside at home. But there are loads of options. D

image
image3024×4032 1.73 MB

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Thanks for that, I will start looking to purchase something ready for the op!

Just a quick question, I’ve had the quote now and it is as you suggested it would be. Can I ask, did you end up paying significantly different to your quote? Any extra fees for example for medication, catering, other medical sundries?

Also do you remember much about Dr Hughes and discussion around how high he would cut the Styloid off? Planning to have this chat with him but would be nice to know your experience of this

Thanks again.

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Hi- no costs are all included. No extras.

Ask him how close to skull base he can remove to ensure JV compression is stopped. I think he does understand the importance of this. D

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Brilliant, thank you

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