Disappointing ENT appointment post-CT

So I’ve been to see an ENT surgeon today. It did not go well. Started off by asking me what pain I am in and I respond that it varies between dull ache and nerve pain. I get frequent headaches and the globus sensation is continuous. He said none of that is caused by styloids. I am told that he can remove calcification but would leave the styloids in place and that none of the symptoms I’ve ever mentioned would be helped by surgery. That he would remove my tonsils and go in that way. I say no, I want the extraoral approach. The NHS doesn’t that I’m told. I said I want a second opinion. I’m told, yes ok, but “I’m the best”. I’m fuming and don’t know how to approach any future consultation now!

Doctors are just like regular people. They can be very arrogant. If you believe that your styloid is the problem, stick with that intuition and get a second opinion, don’t let him get you down. Also, Eagles Syndrome causes all sorts of symptoms for various people. I could be wrong but I am pretty sure there are no “set” symptoms regarding styloid issues.

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So sorry that you’ve had a wasted time, so frustrating especially given the NHS waiting lists! That’s crazy, he certainly doesn’t know what he’s talking about, globus sensation is a classic ES symptoms & definitely improves with removing the styloids! We have to be careful not to name doctors when being critical, & you’ve been respectful of that, but is this doctor on our list? If not, are you able to get a referral to Dr Cellan Thomas? You can always send me a private message to discuss that!
If you do get another appt with someone else, it’s worth perhaps getting copies of a couple of research papers which mention your symptoms, surgery methods & success rates etc to take with you, or perhaps getting in touch with the doctors secretary beforehand to see how the ground lies with ES to save a wasted trip…
There’s a new section on here about patient advocacy, so there might be some useful info in there to help. Unfortunately we have to push to make ourselves heard!
Thinking of you, sending you a hug :hugs:

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Hi, I have just read your post. My husband has been diagnosed with Eagle Syndrome. He saw an ENT surgeon, and had surgery by taking out his tonsils, however, the surgeon had to abort the surgery to remove his styloid bones, after removing his tonsils, not a great outcome to say the least. He is now awaiting a consultation with Dr Axon, who is based at Addenbrooks Hospital Cambridge. Mr Axon is the person you need to be referred to, he specialises in this surgery. Hope this helps.

So sorry to hear your husband’s surgery wasn’t done, very tough…Mr Axon is great, he did both my surgeries, but unfortunately a long wait for appts…For @Rebeckett being in Wales, I think because of our NHS system it’s hard for patients in Wales to be referred to England, very frustrating!

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Thanks Jules. No, Dr Cellan is the only one listed for Wales. I’m going to speak with my GP and see if they can refer me. I’m not sure as it’s a different health board but I’m going to try my hardest. Otherwise I may need to get a private consultation and see if I can get a report that will help my case. It worked for me when I had gynae troubles. Wish me luck!

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Hi there. Do you know if Dr Axon does NHS work? I can afford the consultation if private, not so the surgery…I hope your husband is ok after losing his tonsils for no reason!

I actually had a paper with me which was a literature review BUT I was so taken aback by his attitude that I was a bit dumbfounded. Also, given his bravado about being the “best” I’m glad to have ruled him out anyway! Every cloud and all that! :grinning:

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I have been in conversation with folks on a Facebook group and one of them gave me an idea: she wrote to the doctor who eventually treated her in advance of their meeting. So as I was in no mood to do anything else, I drafted a letter. Yes I included citations, yes it may make me sound like a complete tool. Your comments and suggestions are more than welcome!
Dear Sir/Madam,

I regret my inability to fully articulate my knowledge of my condition and the extent to which it impacts my life at my prior appointment with an ENT surgeon and so, given another chance to advocate for myself, I am writing to you this letter in advance of our meeting.
I started suffering globus in the early summer of 2020, which started in response to a coughing fit and never left. Some time after, began experiencing neuralgia-like pain in my face, soreness in my throat, and the foreign object sensation became so intense that I checked my tonsils for stones (I used to suffer these when I was younger). It was then I felt the bony prominence in my tonsilar fossae which I immediately knew was abnormal as I am familiar with the human skull from my anatomy classes at university.
A quick internet search led me to the condition Eagle’s Syndrome (ES), as palpable styloid processes in the mouth is a classic diagnostic feature according to the medical literature (Choudhari and Sangavi, 2017). I do not recall experiencing this when manually extracting tonsil stones in the past, so due to its apparent progressive nature I sought the advice of my GP. I was initially treated for reflux with Omeprazole, which I duly took regardless of the fact that I felt it would not help: it didn’t. I was then referred to ENT at Glangwili Hospital by which time my symptoms had increased to include the following:
• facial neuralgia, including sensations of cold water running over my scalp and electricity-like tingles and stabs over my face and upper neck. Only responds to Pregabalin which also knocks me out and leaves me pretty useless;
• a constant dull ache in the sides of my head, a milder form of that elicited by applying pressure intra-orally to the processes, but often excruciating and unbearable;
• random sharp stabbing pains in my throat;
• nerve pain in my teeth akin to biting on foil;
• insufferable need to clear throat/inability to swallow, leading to feelings of panic. Making noises in my throat to “Scratch” the sensation, which is, frankly, embarrassing;
• headaches lasting days which only respond to Frovitriptan;
• anxiety on being away from home in fear of having a flare-up which would render me unable to drive or simply interact with others;
• fatigue and light-headedness, and “brain fog”.

None of these were manifest prior to 2020.

I was sent for an orthopantomogram after which I saw another ENT (I belive a locum) who told me he thought I had ES (the first time medical personnel had mentioned it) despite the orthopantomogram being inconclusive. He referred me for a CT scan as I had hoped as I understand this to be the key diagnostic tool for ES and I believe he did too (Czako et al., 2020).
In the meantime, knowing the rarity of my condition, I took it upon myself to learn as much as I could. Alas, I learned that many people struggle to obtain the correct diagnosis and treatment. I requested my CT scan and I joined bensfriends.org, a patient support and advocacy charity for those with rare illnesses. Being a medical layperson notwithstanding, I think I have a good idea of the extent of the styloid elongation, and how it compares to those of others who have seen a vast improvement or complete extinction of their symptoms after styloidectomy. I assumed that given their apparent size and my symptoms (Hasan and Islamia, 2018) and the majority of the literature I have read, that I would be a candidate for a styloidectomy:
“Eagle’s syndrome is a rare disease responsible for polymorphic head and neck symptoms, often resulting in delayed diagnosis. The diagnosis of Eagle’s syndrome is based on the presence of suggestive clinical signs associated with pain on palpation of the styloid process in the tonsillar fossa, a positive lidocaine test and elongation of the styloid process on 3D CT scan. The most commonly proposed curative treatment is styloidectomy, which allows complete resolution of symptoms in the great majority of cases. This procedure can be performed via a transoral approach or a transcervical approach.” (Pigache et al., 2018)
I am currently acting as a carer for my fiancé, but the role is reversed much of the time as I am often in too much and pain and discomfort to function. Should I wish to return to work, it would not be possible at the present time. I am concerned, aged 46, that I will be permanently disabled by the condition. I seek recognition of the extent of my suffering, and to receive the treatment which is recognised globally as the gold standard for the alleviation of Eagle’s Syndrome and give me my life back.

Thank you for your time

References
Choudhari, S. Y. and Sangavi, A. B. (2017) ‘A clinical study of the patients with elongated styloid process’, International Journal of Otorhinolaryngology and Head and Neck Surgery, 3(2), p. 400. doi: 10.18203/issn.2454-5929.ijohns20171201.
Czako, L. et al. (2020) ‘The syndrome of elongated styloid process, the eagle’s syndrome—from anatomical, evolutionary and embryological backgrounds to 3D printing and personalized surgery planning. Report of five cases’, Medicina (Lithuania), 56(9), pp. 1–10. doi: 10.3390/medicina56090458.
Hasan, S. and Islamia, J. (2018) ‘Eagles Syndrome : A Current Update’, Acta Scientific Dental Sciences, 2(5), pp. 49–52.
Pigache, P. et al. (2018) ‘Transcervical styloidectomy in Eagle’s syndrome’, European Annals of Otorhinolaryngology, Head and Neck Diseases, 135(6), pp. 433–436. doi: 10.1016/j.anorl.2018.05.001.

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Hi Rebeckett,

The only comment I have is remove “a positive lidocaine test” (I bolded it) in the article you quoted. Not all people respond to the lidocaine test. For some, it makes the symptoms worse instead of reducing them. We have members who have been denied ES surgery because the lidocaine test didn’t demonstrate the expected results.

Otherwise, I think your self introduction & the info you’ve provided is very good. :blush:

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Yes, that’s not something i have any faith in myself. Thanks! :blush:

I think that the letter is great! I understand that feeling of forgetting everything when in front of an arrogant consultant!
Mr Axon does do NHS work yes, but has a really long waiting list unfortunately, we have a few members waiting for surgery at the moment. I was told by one of our members that you can’t just pay for a consultation privately & then have tests & surgery on the NHS now, the rules have changed, but I don’t know that for definite, worth checking before you think about making a private appt perhaps.

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Cheers Jules. That’s good to know. I’m going to see how things progress with my new referral and then think about what my options are with Dr Axon. My GP surgery has said i can submit the letter to them and directly to the new consultant’ s receptionist.

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It took me 10 years and over 10 doctors for me to even find out I had eagles syndrome. Don’t give up. I got it snapped off and all the head turning pain disappeared. I still have nerve damage, but that’s probably because it took 10 years before it got fixed! I had to go to Philly at Jefferson’s hospital to get it done. I live a thousand miles away. Still totally worth it.

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We usually recommend people steer well clear if a surgeon suggests just snapping the styloid off, but so pleased that it’s worked for you! Thank you for your update :grinning:

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Thats not good to hear Jules…I wouldn’t give up just yet. Id push for private consult, don’t mention NHS. Say you are a cash pay customer and nothing else. You would need to have the CT scan prior to consult for him to review or send in advance. Last I looked online, you could directly book an appt with Dr. AXON on website. He sees patients two Tuesdays a month.I do not know if they follow up after you make that appt and require referral.

I have heard its a long wait for NHS for surgery but at least you have your answers and if there is something he sees in scans to warrant being pushed up sooner for surgery, its all documented.

Anyone seeing Mr Axon would be best to check about getting a CT first, as he likes his done a certain way- the wait for those is long on the NHS too, so if someone was either waiting a while or paying to have one done privately they’d need to check rather than waste time or money! I had to have mine done at Addenbrooks, which was a bit of a pain, couldn’t have them at my local hospital…

So Axon requires they be done at Addenbrooks? That is a pain.

It it some special CT he requires? or Does he just want it all in his system? What are his requirements?

I agree, good to check this before hand. These docs all have different requirements.

Not sure exactly why, just know that the team at Addenbrooks work with him & know how he likes them done…