Passing out can be a function of internal carotid artery compression as opposed to IJV compression which usually doesn’t cause that symptom. Make sure when you have the ultrasound booked they check both veins & arteries if possible.
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Hi, I hope Mr Hughes can help you. It sounds like styloids may be compressing JVs maybe, so do ask about removal as close as possible to skull base. Take care. D
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@Warrick Hey, hope you’re doing well! I notice you were due to possibly have your surgery last week. I’d love to hear about your experience/results when you’re up for sharing. I’m booked in for the procedure at the beginning of June. Keeping everything crossed it’s gone well for you.
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Hey
Surgery was yesterday. Still in the hospital this morning.
So, I booked to come for my pre op assessment and blood tests on 7th.
All went well but a little annoying having to travel 4 hours each way just for blood tests. But I guess that’s the only option as Cleveland clinic don’t have other clinics around the country.
If you are traveling, consider that the pre op bloods need to be without n 7 days of the op as the transfusion bloods expire! I wasn’t made aware of this so had to come back again for a further blood test. Luckily they said I could come anytime the day / evening before admission and I was already planning to stay in London.
We opted to stay in premier Inn victoria the night before, simply as the rooms accommodate a child. Most other London hotels appear to be based on 2 adults only, and anything else is v expensive for a third person. It around 10 mins walk to the hospital.
I arrived at 0630, and was admitted and given my room after maxing out two credit cards paying (for the reward points🤠 rather than straight from current account) (£7921). A little frustration was they didn’t really know when my surgery would be. It was shown as scheduled for 15.55 but I was initially told it would be a morning op. They were going to let me eat until 1000 but when I questioned it they called theatre who said it could be earlier and to stay nill by mouth! Not a problem other than I had been fasting since 20.00 night before! Op Ended up being 1400 hours.
Anesthetist and Dr Hughes met me shortly before and talked it through.
I asked Dr Hughes if he would be able to see the IJV open up, but he explained he wouldn’t want to go near the vein or be able to see it as this would increase risk of injuring it, shame, but understandable. He mentioned nerves and said he is very unlikely to encounter them so doesn’t usually monitor the facial nerves. He said he has never had a nerve injury doing this surgery. He said he would open up the digastric muscle and tunnel up to styloid at skull base I think.
Anesthetic given into the vein, 10 seconds of suddenly getting warm some chest pain (probably anxiety!) and very dizzy and then groggy and then asleep. Not as bad as I had feared. As I thought it might feel like dying / suffocating!
Surgery was around 90 mins I believe. Then woke in recovery with someone gently rubbing my arm. Felt like being rudely awakened from a nice deep sleep. Very groggy for half an hour or so but constantly improving. Then taken to my room where my family were waiting for me. They said Dr Hughes had been to see them already to say everything went smoothly and around 3cm of styloid removed. Hopefully that’s enough. He was clear he would be going to skull base, and my styloid isn’t the longest anyway, I think I measured it at 3.9cm so must be a little stump left over.
I had a groggy heavy headache, not dissimilar to my usual headache but probably worse than normal. And obviously some tugging pain around the neck. Very small dressing and a drain tube coming out which is a little awkward as it can pull a little if your not careful.
Headache 6/10. Neck around 6/10 pain.
Given IV pain meds post surgery by anaesthetist, then nursing staff were able to give paracetamol, codeine and anti inflammatories regularly. Also IV antibiotics for 24 hours.
Lovely food available on demand and I certainly have been eating lots and ordering more and more! This has helped alot and with meds my headache is now 4/10 and neck 4/10 pain. Very manageable.
Numbness is not too big. Ear lobe mostly and around 1 inch around dressing. But all of my face works and I can feel it all!
Jaw a little sore on surgery side but able to eat! Crackling in my ear when I open my jaw is new.
All the staff seem lovely and helpful and the room is quiet and comfortable. Certainly as pleasant as it could be I suppose.
Meals can be ordered for guests to eat with you and are £12 for a tray ( with as much as you order on it!) so very reasonable for London and better than most restaurants!
It remains to be seen if it will be successful in helping my symptoms, I will need to be patient I guess and wait for the post surgery headache to subside and see where I am at!
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@Warrick Thank you for sharing your experience! I’m glad it’s done and hopefully you will have a quick recovery!
I’ve got 3 kids of school age, so my husband is staying home and my mum’s coming with me. We have twin room booked for the Thursday already nearby. My pre op is 3 days before surgery. I’m only an hour away by train, so it’s all easy.
I was wondering too about the IJV! I’ve not had a CT with contrast, he offered surgery based on being able to feel it. I have all the symptoms of IJV compression & IIH though. Good to know what his take is on that, thank you.
I’ve suffered so long with this and have had 3 generals in the past (plus 2 C-sections), so I’m not too nervous. I’m just so desperate to feel better.
I was told he’d take mine off to the skull base (estimated 4.6cm). I guess as long as it won’t grow back, it’s good right.
Wishing you a speedy recovery and I hope your symptoms noticeably subside.
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You will be much more at ease than I was then as a first timer to general anesthetic! That was probably the bit I was most anxious about. I wasn’t worried about the surgery as I get a very confident feeling from Dr Hughes. And he seems to have done a great job so far!
Good luck with your op soon!
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@Warrick I think surgery is scary for everyone, as you’re left in the hands of others with no consciousness, but having had a few def helps a lot with nerves!
I do completely trust him. I’m more nervous about how my symptoms will be afterwards. I know I can’t carry on much longer how I am. I’m just scared I will come out no better. I have been counting down every single day to my op though. I have awful derealization and visual issues.
Keep us posted on the outcome and recovery. Really hoping it’s all positive. I guess it’ll be a few weeks before you know.
Will post on here after my op on 7th.
Take care. I’ll leave you to recover now!
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@Warrick so pleased that you have the surgery done; I hope that it’s successful for you and that you heal well. Take care of yourself and don’t overdo things! Thanks for the update 
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Thank you Jules, definitely a relief to have it over with, and feeling very blessed that so far in not suffering at all really. Just a similar headache to before. Hoping that might be the anesthetic or swelling causing it and trying to stay positive that in the weeks to come my symptoms resolve. Too early to tell! But certainly happy to be in minimal discomfort. Already the numbness in my ear and neck is disappearing too! Grateful to everyone for the support prayers and advice!
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Sorry one more question… this is a big one for me! Did you get to see the styloid removed (or one of those photos of it next to a paper tape measure)? I’m one of those weird people who wants to see mine when it’s out! 
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To be honest I didn’t ask him to take a photo, or to see it! Not sure where it stands legally though as technically I think it comes under the human tissue act so they should ask you before disposing of it?? He just told my wife it was 3cm taken out. I will ask if there is a photo in the post op report though out of curiosity!
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@Warrick glad it’s not just me! Mine have caused me so much stress I want to see them out! I’ve seen photos on a Facebook group and thought, yeah I want one of those! I asked when I had my wisdom teeth out in the NHS and they seemed to think I was a bit crazy.
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Maybe make a nice necklace? Bit like a shark tooth!
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I thought I could put it with my kids baby teeth! I doubt they’ll let me keep it. They wouldn’t let me keep my teeth. I reckon there’s some policy in case you lose it somewhere and it sparks some kind of unnecessary murder investigation?! I will ask if they’ll show me a photo. I’m ok with being a bit freaky.
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Some advice I would pass on at this moment… Ask for a stool softener early on when they give you dihydrocodeine! If you leave it til later it’s no fun! Sorry if that’s TMI! But definitely useful info!
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@Warrick No, good advice! Thanks. Hope you feel better soon.
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@Warrick & @BabzieAM - Here’s a link to a thread posted in 2019 that you’ll be amused by regarding a necklace:
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I don’t know “the rules” in the UK but in the US, the styloids have to be sent from the OR to a lab for examination which I think is ridiculous. Some doctors here take pics of the removed styloid(s) where others won’t even let you see them if you ask. We even had one member who’s doctor gave her styloid to her after it was removed (don’t remember who it was, but I was envious!!). Like you, @BabzieAM - I like to keep or at least see things removed from my body. When my sister had her tonsils out in the early 1960s they gave them to her in a jar of alcohol to take home. Gruesome but awesome at the same time!
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That’s great!
Had a reasonably good sleep last night. Managed to sleep on opposite site to incision with a slight elevation on head but clearly it worked as I woke up nice and late.
A bit more swollen today. Kind of feels like my throat is being strangled by a piece of string, breathing and swallowing is unaffected tho, just a strange sensation! Is that normal? Not too painful though which is a blessing. Head still not clear with some grogginess. Had to change my dressing last. Night as it leaked in the shower and got the gauze wet. That was scary, but actually scary looked very clean and much smaller than I expected. Its also a lot lower down my neck than I expected and nowhere near my ear. I had imagined it being right up under my jaw line / ear, but I think he said he cuts into the natural crease in neck line and tunnels up! Whatever works eh?!
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@Warrick Glad you slept well - better than me! I was awake until 4am with insane tinnitus. I’m counting the days!!!
I was told he cuts into the crease of the neck too. I think it heals better. I’m not fussed about scaring though and thought about asking him to just go in where’s best, but decided I’ll let him do what he does.
I’ve heard people of a Facebook group mention that weird strangling feeling. I think it’s going to be normal for a few weeks to feel some unpleasant sensations. Definitely don’t worry about them. I’ve had a lots of abdominal surgery and 3 kids… trust me it takes time to heal, don’t be disheartened. Also I read somewhere that nerve pain can get worse during healing as they repair themselves?!
Anyway keeping everything crossed for good results!
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