Had a long awaited ENT appointment today at Aidenbrooks which was 120 miles drive from my home. I had previously been diagnosed with ES locally as I have elongated Styloids and have have terrible ear pain and Tinnitus and a constant headache together with swallowing discomfort. My local ENT Consultant originally attempted intra oral ES surgery but aborted the op after removing my tonsils. After this I was then referred to Aidenbrooks. The Consultant there, thinks I do not have ES because I do not have any pain in my throat area and that my glossopharangeal nerve does not seem irritated by my styloids. All in all, a complete waste of time given He didn’t even make any suggestions of what could be causing my ear pain or ear fullness or any other of my symtoms. I always said I didnt get any throat pain, Its mainly to do with my ears and some swallowing discomfort and a constant headache. I dont know where I go from here, as I am still in a lot of life changing pain. The consultant I saw today just didnt seem interested. I am very down hearted with it all. Oh well Tomorrows another day. Its Back to the drawing board I suppose.
I hope others are having more luck than me. All the Best. Sparky.
@sparky - I’m really sorry to hear about your experience at Addenbrooks. Mr Axon is the most experienced ES doctor there but he seems to be only seeing people w/ vascular ES w/ pulsatile tinnitus as a symptom now. Very disappointing as he used to take all ES cases. We have a member (@PatientD) who recently had ES surgery done by Mr Hughes in London. She is very happy w/ her surgical outcome so far. If you’re willing to try again, Mr Hughes might be a good option.
Your symptoms are very typical of ES & not all
People get a sore throat as an ES symptom nor does everyone get glossopharyngeal nerve symptoms. Your symptoms sound like they are coming from your trigeminal nerve which is a nerve commonly affect by ES. You can use the magnifying glass icon above to search discussions about trigeminal nerve pain. It can cause terrible ear pain, pain in teeth, nose, & can cause migraine level headaches.
Please don’t give up. You need your styloids removed. There will be a doctor willing to help you. You just need to find him/her.
Hi, yes I had a very similar experience to yours when I saw Mr Axon having booked a hotel and traveled with family to meet him in person (at his request). He provided no diagnostic or therapeutic help, apart from referral to a Neuro radiologist he works with. I spoke with him on several occasions.
At start of 2022 I gave up on him helping me with my VES and arranged to see Mr Jonathan Hughes an ENT surgeon at UCLH who can operate to remove styloid to skull base. He operates privately at Cleveland Clinic London now. I have posted his details recently and he runs lots of clinics in London & M25 areas. He is a very good ENT surgeon and he is able/willing to help VES/ES patients. He is very busy so best to see him in person at clinic,then book theatre time.
I know he does operate for NHS but no idea on wait times. I was just too ill to wait any longer. Don’t give up. Good luck. D
Thanks Isaiah and PatientD for your replies and encouragement. Perhaps I caught Mr Axon on a bad day. I got the impression from him that he has done opps that havnt worked out and he was very wary about taking that risk with me. He just didn’t seem interested in me in any way or offer me any advice even. He didn’t even look at my CT scan. As soon as I had told him I wasn’t getting severe throat pain that was it. Non of it was great. Anyway I’m still stuck with what I have, and I have to at least keep trying to find some one who can help me in some way. Ill now see if I can get a referral to see Mr Hughes. Thanks again for all the advice. Its much appreciated, I dont know where I would be without this site. All the Best, Sparky.
Hi, yes I believe Mr Axon now has to get committee approval before he can operate (in some cases). This suggests to me been some issues maybe. Mr Hughes does not have that issue. I did not need a GP referral in order to see him but I was self paying private patient. NHS or private medical insurance may require one. Good luck. D
So sorry that the wait and the travelling were a waste of time for you, that’s really frustrating. I had surgery with Mr Axon 6/7 years ago, & he was very helpful; I had vascular symptoms rather than throat pain but this was never an issue. As @PatientD says, there seem to be more protocols now before Mr Axon can do surgery & cases go before a panel to decide as well.
Mr Hughes may well be a good option, I’ll add a link to the doctors list, there are a couple of doctors in Manchester & Blackburn who could be worth a try otherwise.
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope that you’re able to get help from somebody else, thinking of you…
Hope you don’t mind me asking, but has the pain reduced, or deminished since having surgery to remove your styloid bones?
I am finding more and more that doctors (aside from rules/protocols) are limiting themselves to straightforward, less complex cases.I have had this happen to me several times now and with my daughter. Just last week I had a vascular surgeon cancel 3 hours before an appointment and I was already in route. Something similar with my daughter, cancelled 3 hours before appt because of the “complexity” of the case.
Went to a shoulder guy last week to recheck an old rotator cuff surgery. He took an x-ray and showed it to me and said see no arthritis and sent me on my way. Very dismissive. Ive since had a MRI and arthrogram which clearly shows otherwise. The guy was full of ^$*^%$$^. Another doc explained he likely just didn’t want to deal with a complex case. Some docs are just burnt out and unmotivated. Also I suspect comes down to $$$$. They (Independent or group practices) likely make more money with straightforward, less complex cases and surgeries.
My max fax jaw surgeon warned me that many consultants won’t operate on styloid to skull base because it is high risk surgery. I think a lot of medics worry about being sued & medical negligence claims. So avoiding higher risk surgeries helps them manage that risk. But it leaves patients with complex/higher risk conditions without the help they need. Also their insurers can impose conditions on their professional insurance cover (which is why my jaw surgeon was unable to help me despite wanting to). D
Having said that there are still caring medics out there who will help, the challenge is finding them. I decided long ago I had to learn to move on & shrug off bad medic events. Not easy but they don’t care so the only person impacted is the patient and letting go helps. Stay strong & hope you find the help you need. D