Yes that really is a puzzle. Does he know you have VES? I will try to deindentify my op report & post it so you can see his op procedure. He confirmed both sides he removed to skull base for me. Really sorry he was not helpful to you. D
1 Like
Yeah we talked about vascular compression, as that’s what I have! I don’t have any classic Eagle’s symptoms or particularly long styloids.
Maybe it just means Mr Hughes is a better option than I thought…
1 Like
I hope so. D
We have had some confusion on here about removing to skull base- several of the very experienced surgeons when questioned have said their ‘removing to skull base’ can mean leaving a small stump if that’s needed, if it would risk the cranial nerves to remove any more. But worth querying if you do see Mr Hughes…
1 Like
Hi, when I get my scan next year I will ask for screenshots of JV so can see if all of styloid to skull base is gone as Mr Hughes says & post update. D
3 Likes
Thank you I will be very interested to see that 
Hi @PatientD I hope you don’t mind me asking about Mr.Watkins? …trying to navigate the UK maze of finding a way to get scans/assessment for my chronic headaches and possible IIH/ Eagles/ IJVC ect… Saw Mr.Axon via zoom in 2020… just been quoted £500 for 20mins zoom consult with him…! Not even sure if he is still doing scans with Higgins? Looking for possible alt routes?.. Extremely nervous to see a UK NS after way was treated re AAI/CCI… have medical ptsd after much neglect and poor treatment… Only ever trusted Dr.Gilete in Barcelona to do my 2 neurosurgeries… just wondered what Mr.Watkins bedside manner was like? And how he feels about EDS and CCF ops ect? Thank you in advance and I hope you are feeling much better after all that you have been through (have read your recent posts of your surgeries -youve been through a lot!).
4 Likes
sorry did not answer about Mr Watkins. he is very expert in all neuro and handles the most difficult cases at Queens Sq. I have found him logical and knowledgeable. prepare questions you have and he will try to answer them. he has taken an interest in spinal instablity topics I know and so is familiar with EDS causing this and other problems I think. he knows Mr Timothy and Mr Axon. Mr Hughes is part of UCLH too. QS do not carry out spinal fusion at C1/C2 now but I hope they will in future. he has helped with private & NHS diagnostic test for me (venogram/ICP monitoring/scans/xrays) and helped me understand results. he only charges £150 for consult (less than most). I dont think he does it for money reasons. downsides - he is often late & not good at follow up after consults, prob as so busy, but his private sec Ashleigh is very good & tries to help. In your position I would get GP to refer you to Mr Watkins at Queens Sq on NHS and I probably would see Mr watkins at private consult so he knows about your case & can help you navigate Qs for help you need - they have so many areas of expertise & so can be confusing. D
3 Likes
Good morning all, my GP will refer me to a surgeon privately and as I live in the south (UK), I guess it would be Mr Hughes or Mr Axon? Are there any others? Anyone gave up to date info regarding waiting times and costs etc?
My problems continue and headaches are constant and severe, often starting suddenly when I get up, like someone has squeezed my head into a concrete shower cap. I get sleepy (like when you’re in a hot room and doze off). Fatigue, neck pain and back of head. Deep ear pain on left. I’ve recently had yet another infection (chest), sa02 not above 94 now. Throat hurts still and my voice fades away but not hoarse. BP is labile. Fed up! 
4 Likes
Hello
Sorry to hear your symptoms, sounds like vascular Eagle Syndrome to me as I had all the symptoms you describe.
I just had surgery again with Mr Hughes. Circle group website where you can book slots yourself online shows clinic consult availability in Sept & early October. Or you can call his Secretary at Cleveland to see what he has at Portland Place clinic. Not sure on surgery slots but it can be few weeks.
I did not have a good experience or any help from Mr Axon but he runs clinics at Spire Cambridge I think & has helped some members in past.
Recently was mention of another surgeon at One Welbeck in London but I have no experience of him.
I did post some tips I found helped me waiting for surgery in case helpful.
Important to ensure you get removal to skull base if VES. I had to have revision surgery as not close enough to skull base removed last year.
Am only 5/6 days post op so too early to report on op outcome yet with neck swelling, but will do so when calms down.
Hope you find help soon. This condition is really tough. D
3 Likes
I think those two doctors are the best options…sorry that you’re still suffering, not surprised that you’re fed up! 
1 Like
Hi, to be honest I think moderators probably know answer to that better than me as I only know about ves.
If it’s an Eagle syndrome issue that is not VES then from what I read I think partial removal does help.
This revision surgery has been much tougher as incision goes right up to base of right ear. So side effects are worse than 2 prior ops. But it’s only one week tmrw since my surgery & I feel may be turning corner soon. I do think it has likely fixed my right side brain pressure problem and for me sorting my brain issues out was top priority.
I will try to post op summary that explains what they did soon.
I am glad I had the surgery. This recovery phase is just a short term problem to manage.
Take care. D
4 Likes
@Mcwelly - Mr. Obholzer has also been mentioned on our forum & a few Facebook ES members have had him do their surgeries w/ reportedly good outcomes. It might be worth a consult with him. We haven’t added him to our Doctors List yet as, so far as we know, none of our members have had surgery with him.
2 Likes
It really depends on where abouts on the nerves the styloid is compressing them, but lots of members have had successful intra-oral surgery where not as much of the styloid’s been removed…
1 Like
Good morning all. I have arranged a consultation with Mr Hughes in London for the end of October. A GP referral has not been necessary and I have to say, his secretary could not have been more helpful nor more speedy in getting back to me. Some hope on the horizon that one way or another I can get some answers, whatever they are 
3 Likes
that you do!
That’s really good news, @Mcwelly! I’ll also be praying for your appointment to begin shedding light on what’s causing your symptoms.
2 Likes
Hi, I am doing ok, given only 2 weeks post op. Just been to seaside for 2 days. Still got swelling around incision. It’s healed now at surface so have started usual routines to help. Early days but think op has helped me -time will tell. Having incision right up to under ear is more painful/difficult recovery but was needed to remove to skull base. Some nerve damage am living with but hoping will improve. First bite syndrome is getting better. Prior ops resulted in JVs widening so hoping for same outcome as body adapts. Queens Sq NHS team have agreed to repeat image me later this year so will find out then what effect on JVs has been. But am hopeful. Will try to post op summary soon. Take care. D
5 Likes