I’m fairly new to this group, having been diagnosed just a couple of months ago, so apologies if this question is in the wrong area. Has anyone had surgery or been treated in Cardiff, South Wales? It’s taken 5 years to get to this stage, which doesn’t sound unusual after reading some of the stories on here. An ENT surgeon looked at my scans and ruled out an intraoral approach and I have been waiting for the last 6 weeks to hear whether someone in the maxilofacial department is able to carryout the styloidectomy extraorally. I have a feeling that I haven’t heard anything because they just don’t know what to do with me!
Hi, I was diagnosed last year following a panoramic X-ray. However, it is only recently that I had a CT scan with contrast. I am due to visit the consultant in Spire Hispital Cardiff tomorrow to discuss my results. I live approximately 22 miles from Cardiff.
You can have a look at the doctors list in the Doctors Info section to see if there’s any doctors in your area if you don’t hear anything soon…
There’s also lots of info in the Newbies Guide section about surgery; it’s good to find out as much as you can beforehand so you have some questions ready to ask.
cjeagle- Do you know who you’re seeing? We know of Mr Corbridge who works for Spire, but think he’s more Reading way. If you’re seeing a doctor through Spire, Mr Axon who’s based at Addenbrooks in Cambridge is the most experienced surgeon in the UK with ES that we know of. He also does work for Spire, so if your doctor hasn’t done the surgery very often, maybe it could be worth asking if they could contact Mr Axon to ask his advice? Not sure if that would go down well or not…! Hope you get on okay!
Hi Jules, I am keeping Mr Axon in mind, however, Cambridge is approx. five hours drive from where I live. I did phone his secretary last week but she hasn’t got back to me. Reading is approx. two and a half hours (but from what I’ve been reading I don’t think the consultant is as experienced as Mr Axon). The consultant I’m seeing tomorrow has only operated on one person with ES. The main thing I want to do tomorrow is rule out the vascular type. I think my ligament is 58 mm on the left side and calcified, I’m not sure about the length of the right side but that one has clumps of calcification with the longest being 28 mm.
Hope you get some answers! Let us know how you get on…
Hi Jules, I saw the consultant tonight, he didn’t have anything to tell me that I didn’t already know. He mentioned operating intraorally. However, I mentioned that not as much of the styloid process would be removed. I also mentioned that I wanted nerve and vascular involvement ruled out. As I went privately he didn’t have access to my CT with contrast although he had the report, therefore he needs to speak to the radiographer in order to answer my questions. I mentioned Mr Axon but he said he and his colleagues had the expertise to deal with my case.
Thanks both for your replies. I really appreciate your time and input. Would you mind if I asked you a few specific questions cjeagle? Like -
Who you saw at Spire in Cardiff?
Was he recommended to you?
What is his field of expertise?
Do you know if he, and/or his colleagues have done the operation before?
Was there a particular reason why you saw someone privately?
Who did you see in the NHS and what department?
I’m so frustrated and upset right now. I have had 5 years of appointments, tests and scans with no real answers. I really thought that I was getting somewhere though, when my dentist referred me, over a year ago, to the maxilofacial clinic because of severe jaw problems and I eventually got a diagnosis that fitted my symptoms completely. Then, to cut a very long story short, I found out today (after making lots of phone calls), that I have been referred to someone else again, but I cannot find out who, or what department!
I do hope you get sorted out very soon cjeagle!
That is so frustrating, I really feel for you… Along with ENTs, Otolaryngologists/ Skull base surgeons are used to operating in the area of the styloid processes, so they’re a good bet to try & get a referral to if you can. I might be worth looking at where the nearest Otolaryngologist is to you on the NHS, & seeing if they can refer you to them, if they haven’t already tried that? Thinking of you…
Hi Pumkin, I was under ENT at Prince Charles Hospital, I had a CT scan with contrast. When the results came back the consultant referred me to Mr Berry who is a Consultant Otolaryngologist at Royal Glamorgan Hospital (I went privately to see him as I may have had to wait approx. 3 months otherwise). He said he has now had my NHS referral so he will see me on the NHS next time. Can you tell me if you experience any tinnitus? (Because that one of my main symptoms that is causing me to lack sleep). If you need to know anything else, feel free to ask me.
Thanks cjeagle, that’s really helpful! I panicked quite a bit this week, because I didn’t have a clue who I had been referred to for the surgery. Over the last 5 years I’ve been lost in the system quite a few times, which has been a nightmare and it was obvious that it was happening again. After a lot of detective work I managed to contact Professor Thomas, the maxillofacial consultant who had made the diagnosis (only after me telling him) and referred me to a “colleague” of his, for surgery. He apologised, as “the system had actually lost the letter”. Anyway, I’m feeling much happier now, and exhausted. He is Mr Cellan Thomas, a maxillofacial surgeon at UHW Cardiff. He is part of the Head and Neck Cancer Support Team. I don’t know if he has done the operation before, but i will find out soon, I hope.
I am really grateful to you both and this community, which is so supportive!
I do have tinnitus cj, but not to the degree that it keeps me awake. That must be so debilitating. My main problem has been headaches / pains and fainting when I turn my head. Please let me know how you get on cjeagle and I will hopefully have an update soon.
Hi Pumpkin, I’m glad you found out who you have been referred to. It was maxilofacial at Prince Charles Hospital that diagnosed my ES. However, the lead consultant could not answer any of my questions and he said that he had only come across ES 5 or 6 times in his 30 yrs. He didn’t know who to refer me to, therefore I ended up phoning the neurologist’s secretary but he wouldn’t see me, so when I visited audiology re. my tinnitus I asked to be referred to ENT. I have been suffering from my various symptoms since September 2013. I think my new consultant has only carried out one operation on ES and I don’t know the outcome. I am really worried as I had a different operation over 4 years ago which left me in a mess. So this time I am more cautious. Good luck and keep me posted (in fact I was in Cardiff today).
Hi cjeagle. I too am from the South Wales area about 24 miles from Cardiff.
A ct scan of my sinuses 2 years ago picked up ES. I have calcified ligaments on both sides, 46mm on the right and 41mm on the left side which is intermittent.
My main symptom is continual tinnitus day and night and I too have difficulty getting off to sleep with it. I sometimes get, how can I explain, like a zinging noise in my ears and can occasionally feel slightly vertigo-like.
I also have pain on turning my neck and pain in my shoulders (I don’t know if this is related to ES).
I’ve seen Mr Berry. He told my he could operate but it’s not to say it would elevate my symptoms.
Personally, I feel ES is a very grey area…
The first ENT doctor I saw said my symptoms are to do with ES and that now I know what it is I should feel better about it. I’ve also been told that the tinnitus is not related to ES and my own doctor has advised me against surgery.
So … I’m living with this and the tinnitus is awful which I feel is to do with ES. I too wonder if it is vascular.
That should have read ‘eleviate’ and not elevate
I also asked if there was any medication I could take rather than go down the operation route and I tried amitryptilene but I felt this only masked the tinnitus - it did not stop it and it was still there when I woke up
Fellow UK person here. Do you guys have the bone poking into your throat behind your tonsil?
Has anyone seen mr v singh based neath port talbot hospital, this is the consultant i saw who gave me my ct results, he is a consultant ent surgeon. I didn’t ask him out right whether he woukd be the one to do the surgery but he did say he had done 4 or 5 of them intra orally.
Hi Steph, I saw a Mr Singh a few years ago in Cwm Taf (I don’t know if it’s the same consultant). He said I have tinnitus and would have to live with it. However, I have since found out that I have ES. I tend to feel that the noise is external and wonder if I am picking up the sound from the wind turbines near to where I live (I’m really unsure).
Hi Smithy, I get intermittent pains in my throat, I think others on the site have mentioned the same symptom you are describing.
From what I’ve read on here I think it’s extremely important to rule out vascular ES because that would guide the type of procedure to be carried out i.e. intra or extraorally. Mr Berry mentioned intraorally until I said I was concerned about vascular ES. Where did you see Mr Berry? and when?
If you are 24 miles from Cardiff where do you live? I live a few miles from Aberdare.