Hello everyone,
My nephew has eagles syndrome with C1 impinging on one of his IJVs.
Looking for a surgeon in the UK who does C1 resection.
Has anyone been to Dr. Hughes in London for this operation ie C1 resection.
Was it successful and would you recommend Dr. Hughes?
Thank you,
Shauna
A couple of members have had surgery with Dr Hughes, here’s a couple of discussions by them:
Review of UK Surgeon - Symptoms and Treatments - Living with Eagle
Surgery with Mr Hughes London this Friday - General - Living with Eagle
You can always send a private message to the members by clicking on their avatar to ask more info. I hope that you can get some help for your nephew soon!
Hi Jules,
Thanks for your reply and information. I will look into those links and will reach out to some of his past patients on here.
Thanks again!
Hello
I’ve just seen this email about Dr Hughes.
I have made an amazing recovery thanks to him and I wholeheartedly recommend him, he is a life saver. 4 years on I am 90% recovered with only occasional flare ups of trapped nerve.
If anyone wants to contact me they are very very welcome.
Julia
Hi Julia,
Thanks so much for replying to me. That is great that you are 90% better!
What surgery did you get done with Dr. Hughes?
what nerve is causing the flare up and any ideas as to why this is happening?
thanks,
Shauna
Hello
Dr Hughes did an external stylodectomy and gave me my life back. As a result of the surgery I have a slightly odd bite…which I was warned about, and occasionally that results in irritation of the glossopharyngeal nerve. But we are talking a few times a year, as opposed to 100% of the time. My vascular symptoms have gone completely and I no longer take nerve medication, where at one point I was on three different drugs. My scar was cut into existing neck wrinkles and can barely be seen. I had no post operative problems.
He is such a talented surgeon and a very kind and helpful person. I paid a lot of money to see him privately at the London Clinic through sheet desperation but I am very glad I did.
Julia
It’s so great to know you’re doing so well, @Julia! Thank you for sharing your experience w/ Mr. Hughes.
Thanks for coming back on to follow up on your post, really good to hear that the surgery has worked so well for you!
Hi Julia,
Thanks so much for your reply and for all that information. That is great that you are so much better and can live a normal life.
My nephew needs a C1 resection. Do you know if Dr Hughes would be good for this? His secretary has confirmed that Dr Hghes does C1 resections but I dont know who has had one done with him and how successful it was. I know Axon is supposed to be wonderful at this but Addensbrookes politics seems to getting in the way there.
Do you know if Dr Hughes has a good reputation for C1 resections?
Thanks so much Julia and continued healing to you,
Kind regards,
Rachel
Hi Shauna,
I would absolutely trust him with my life in any ENT or head and neck capacity. I met Mr Axon but he was unwilling to help me, which is why I went with Dr Hughes and I cannot express how much pain I was in before I did so.
He is such a clever and talented surgeon, with amazing reviews, I would assume he wouldn’t agree to do C1 unless he was confident. He has a very good reputation to protect so I think he will be in great hands. Most of all, he seems to understand the difficulties that these odd head and neck conditions can cause to people and he shows great empathy.
Good luck to your nephew.
Julia
Hi Julia,
Thank so much. Thats great to know that you find him to be a brilliant surgeon and he sounds like a nice human being. Alot of consultants seem to lack empathy which is so important…
I will tell my nephew.
Thank you so much again,
Best wishes and continued healing to you,
Rachel
Hi Rachel/Shauna,
I’m on the same path unfortunately. Any chance you could let us know what happened in the end ? Did your nephew go to hughes and how was it?
Many thanks
Finn
Hi @Finn,
Welcome to our forum. There has been a whole lot posted about Mr. Hughes by our member @PatientD. She’s seen him as well as Mr. Timothy for several surgeries related to ES & other things. If you search Mr. Hughes &/or Dr. Hughes using the magnifying glass icon in the upper right of this page, all the posts about him should come up for you to read.
Hi Finn,
He had a quick phone call/zoom with Hughes and it was very rushed. My nephew felt he wasnt being listened to and Hughes didnt look at the scan. My nephew also did a zoom consult also with Dr Timothy. He is not convinced that my nephew has a C1 problem from looking at the scan. My nephew is going to get an MRV done as veins in head were not included on his scan but Timothy won’t order it as its not under his remit. It so frustrating. Where are you at with this? I hope it works out for you. I think Timothy is probably more used to doing C1 shaves. Have a look on the fb page Venous Outflow Disorders, there was someone on there recently who had c1 shave with Timothy and found him good. I think her name is Laura or Lauren, if you search for her or Timothy you will find the thread on it.
Best of luck,
Shauna
Thanks very much for the update and sorry for your nephew that things aren’t going smoothly. I’m at the beginnning really. My mri shows bilateral complete compression of IJVs but nooone is following it up. I only know i have this because i analysed the mri myself! Maybe i’ll try Timothy
thanks,
Finn
Good job reading your own scans (not something I could do for myself!). Now on to being your own best advocate. Our self-advocacy section on the home page can be quite helpful so please read through it if you’re able.
Thanks. I had just finished a phd when i got sick and am used to looking at scans (albeit of hearts not necks). I also have zero faith in drs so am not going to take their word for anything at all.
Congrats on your PhD!! You’ve proven yourself to have tenacity. That will certainly help you in your current health situation.
Hi
So Mr Hughes is great for styloid problems. Not sure about C1 as is skull base not ENT.
Mr Timothy is good for C1 trims. Not styloids as is eNT.
Both are decent human beings who do try to help patients.
Sadly the outpatient consult model does not work at all well from a patient point of view and I am not surprised to hear that your nephew felt things were rushed and outcome not great. I have tried various approaches to solving this problem, with limited success.
But I would advise that you have to be determined and tenacious in getting the help you need, especially as there are so few surgeons in UK who help our patient group
C1 trims are really more the in the territory of skull base surgeons but most in UK are not yet performing this type of surgery on C1. Mr Timothy did invite skull base surgeons to a recent neurosurgeon event in Ireland to try to get them involved but think main focus was on CCI topic rather than C1.
I read about medic at One Welbeck who has helped members, but unsure if does C1. Maybe other members who saw him may know?
To demonstrate perseverance required I had to pay myself for private Venogram at Queens Sq, was a long & difficult day, but it showed pressure on right side of brain was higher than left side, and this persuaded Mr Hughes to do styloid revision surgery on right side.
Wish it were easier to find the help needed. Stay strong. Don’t give up. D
So sorry that you’re not getting anywhere, so frustrating! Keep strong & keep pushing…