Hi, I have long awaited op to remove right styloid this Friday to try to cure my Vascular Eagle Problems. Been a long wait. Hoping it will help. Any advice welcome. I will let you know if it happens & how it works out. Thanks. D
Hi I had my right styloid removal surgery on Friday 26:8 as planned for my VES. Mr Hughes and his team did a great job for me and the terrible trapped blood and extreme pressure inside my skull was instantly improved. My brain was living in a “stormy sea” but now it feels like a “mill pond”. Extreme pressure around right ear area has gone. I do have post op swelling as expected but am using ice and steroids to try & help. My operation was external with removal of styloid at skull base. Mr Hughes operates privately most Fridays at cleveland clinic london now and helped me sooner than Mr Axon could. He does have NHS practice at UCL but expect is long wait times for NHS referral (May be wrong). Thanks for all your help and advice. I wanted to let other patients waiting for help that Mr Hughes would be a good choice for more speedy help. D
Hey, thanks for sharing an update and big congrats on getting such good symptom relief already. I was literally in contact with his office a couple of days ago asking if he had any experience with vascular eagles, but he’s now on leave until the 14th Sept so didn’t get a response.
How much is it to have private surgery with him?
Apart from taking the styloid out, does he have any additional components he takes into account when doing the surgical procedure on a case by case basis, such as C1 resectioning, jugular decompression, muscle dissection, etc?
Hi, will try to answer your questions on Mr Hughes to extent able.
So he recently decided to only operate at the newly opened Cleveland Clinic in london. Tbh I was thrilled about that because I knew it would probably cost more there. I was admitted early on operation day and just stayed one night only and it cost me a bit over £5k, which I felt was very high. I was just too unwell to wait any longer and mr Axon in Cambridge had done nothing to help me since I saw him in nov 21 and on several occasions since. I asked my Gp for NHS referral but have not even had an initial consult yet ( he sent referral to Cambridge where Mr Axon works).
I would have no hesitation in highly recommending mr Hughes for any EnT related problem and VES/Eagles issues. I think he does a lot of cancer work. The theatre team were excellent and nerve monitoring was reassuring.
My HV decompression operations and my spinal fusion operations were performed by mr Jake timothy at Nuffield Leeds. He is an excellent Neurosurgeon and while a trek up to leeds he was worth it for me. He is not ENT so does not remove styloids. He usually trims C1 tubicle to decompress JVs. In Jan 22 he did cut my right styloid for me in theatre for me on unplanned basis as both C1 and styloid were compressing my jugular vein. But He told me he had not had to do that before as he is not ENT.
I hope those answers are helpful. I don’t know what else mr Hughes is able to help with but if it’s ENT related he is a very skilled surgeon to use.
Good luck in finding the help you need. I know it’s not easy. D
Thank you for the update & info about Mr Hughes- we’ve been given his info but not heard much about his surgery technique etc. So pleased that your vascular symptoms have improved already, that’s great news! I hope that you continue to heal well, take it easy & God bless
Hi, so swallowing water this morning 3 days post op tricky. Using liquid codiene still for pain. Small sips, pushing fluid up & to left side (away from op side) seems to help. Still post op swelling but using 7/8mg steroids a day is helping, along with ice packs. Had steroids in hospital (x3), but none given on discharge. So using some I had left at home. Hope will settle down soon. Early days. D
Thank you for the great information, @PatientD! I’m so glad you’re surgery is behind you! Some doctors in the US prescribe Prednisone to help reduce post op swelling but many don’t. We encourage our members who aren’t given a course of post op prednisone to ask for one if they have a lot of swelling. I found it helped reduce mine significantly. I think it was about a 10 day course for me. Since you’re also finding it helpful, can you request a script for it so you have enough to take you through about 2 weeks of recovery? Glad you had some at home already.
It sounds like Mr. Hughes did a great job. I’m really happy to know there’s another surgeon in the UK who is helpful w/ ES & especially the vascular version. You’re in the period where post op swelling is the worst (days 3-5 post op). Hopefully you’ll start noticing you can swallow better by the end of the first week after surgery & going forward. Many of us had that problem for a few days to a few weeks after ES surgery. You can try melting ice chips in your mouth or sucking on popsicles to help w/ throat pain/swelling, too.
Thanks for the tips on mouth & ice. Tbh today has been really tough for swelling & blood has got trapped inside my head again as it did before op. Am sure it will pass as heal and full benefits of op will return. Will use steroids as you suggest but not sure GP will give me any more. May try Arnica pills & cream as that worked very well to help my son with severe swollen face after playground fall 10+ years ago. If it helps will let you know. Ty. D
I hope that this passes soon & you go back to feeling the benefits of surgery! As you say, early days, it’s good that you’re calm about it Will keep praying for your healing
Thank you for Mr Hughes slots I will mention that he runs weekly clinics at The Circle Health Group hospitals (I saw him at Kings Oak & Chiltern Hospitals). You can just book slot online yourself. He is at both clinics on Sept 13 with available slots if anyone needs to see him. D
@PatientD - As you said, once your swelling decreases, the blood flow should get back to normal. Make sure you’re sleeping & resting with your head significantly elevated: 30º of head elevation has been suggested by one of the US surgeons. I followed that advice & it helped a lot. It was 6-8 weeks post op before I could lie flat again w/ only one pillow. We have found that a wedge pillow w/ additional bed pillows added on top is the most comfortable way to create head elevation though sleeping at 30º feels like trying to sleep while sitting up. It takes some getting used to.
Thank you @PatientD for your answer. I appreciate 5k is no small amount of money but considering axon charges around 11k for surgery privately it seems a worthwhile investment to me.
What I’m afraid of is spending another £250 to see Dr Hughes only to be told he doesn’t think I have eagles syndrome. I have all the classic symptoms and very clear significant jugular vein compression on both sides between my styloid and C1 but my styloid length is borderline normal. Is he particularly focused on the length or does he take into account the vascular compression like Axon? How long were your styloids? Many thanks
Hi, so I think if you can take scans/images to show that your JVs are compressed, then mr Hughes will agree to help you. I had my JV compression on hard discs but in end I got screenshots from my neurosurgeon, printed them & took them to my consults. Tbh medics so busy I found they rarely had looked at my scans, even if their private Secretary had obtained them at my request before consult.
I did have to see Mr Hughes more than once, but he was much more willing to help soon than mr axon (no help at all) and I was due my spinal fusion op at 1st consult, so we agreed to meet 4 weeks post op. My spinal surgeon intervened to cause a bit more delay. Then emergency eye surgery. Those factors won’t affect you.
Queens Sq just told me my styloids were elongated & that styloid ligament was calcified, but compared to Eagle styloid images I have seen mine were not that long. I do have images but have not worked out yet how to post images on this site.
Another thought- if you can show your JVs are compressed, then another option is to try my neurosurgeon in Leeds. He views trimming C1 tubicle as way to decompress JVs. But he does not do styloids normally. But he did cut my styloid when saw compressing JV as trimmed C1 tubicle in theatre. He does remote consults. Op Cost is about same as Mr Hughes & only 1 night stay. He cut styloid but did not remove it. I had a very small scar hidden behind bottom of ear & recovery was much easier as no swallowing issues & post op swelling much less. I guess is less invasive as so close to styloid. But ENT is traditional route so don’t want to confuse things in talking about this alternative solution. Mr Hughes was interested at consult to see how my neurosurgeon had operated. D
Will keep praying for your healing 