New here from Scotland

[Lemontree]

Sorry if I’m posting in the wrong place - I’m not very tech sav, it took me ages working out how to post. Thanks for this website, it’s amazing and so helpful already. Here’s my story - desperate for some advice.
At the start of this year (2023) I felt something sharp at the back of my throat. I started to poke around down there and was surprised at what I felt. I have no gag reflex so it was easy to feel about and run my finger alongside it. I went to the Dr and she had a feel, she said to me it was a nodule and that I had to wait 3 weeks to see if its gone down. Of course 3 weeks later it hadn’t gone down, I also knew fine rightly it was not a nodule. Within that time I managed to figure out what it was. It felt like bone and it was long. I know nothing about the anatomy of the throat so I researched bones in that area and up came the styloid process. After three weeks I went back to the Dr because it well … was still there. I said to her I think this is an elongated styloid and she looked at me and actually laughed, she said “no it’s a nodule” and she referred me to ENT. So it then took me 5 months to see an ENT Dr (that’s the NHS in Scotland for you). I told the Dr right off the bat that I have an elongated styloid, he looked at me rather surprised. He felt around and said “eh yes you do”. I then got the CT scan. It took a while to get an appointment back with him, maybe 3 months. The results from the letter says that I do indeed have Eagle syndrome.
So the other day I finally met with the ENT dr.

So it turns out i don’t have one but I have two elongated styloids. I can actually feel them both below my tonsils on each side. Mt Right is longer its 5.5, the left is 5cm. (I asked him to measure them by the way as he hadn’t done that).

He asked me about my symptoms and if things have improved. I said no, things have got worse. I said the throat spasm at night are awful, it feels like I am being strangulated. (I have had this and sleep apnea for many years, I’m 8 stone and don’t fit the classifications for sleep apnea). Anyway, he said that the the elongated styloids have NOTHING to do with this, that it’s reflux. He said the ONLY thing that an elongated styloid would do is cause pain at the back of the throat when swallowing! He starred through me and I shut up there and then. He then went on to say about surgery and seemed keen to get me to sign the paper. He asked is it’s ok he takes pics for training purposes.
I asked him if he’s ever done surgery like this and he said no. I said is there any other dr’s who have done this and he said none in Scotland.
He then said he’s going to do it intraorally and did not mention tonsil removal.
I asked him if he thinks there any nerve compression and he said they would not do that. I said how does he know that, he said because we would see that in how the tongue presents itself … it would shake? By the way he never looked at my tongue. He will be using a robot for surgery, but I’m terrified as I don’t feel he knows anything about eagle syndrome at all??? I think he’s keen to do his first op to look cool and train his co workers lol

Here’s my symptoms - I’m not sure they are all related but I feel it adds up.
When I lie down my heart rate accelerates, trying to sleep is horrible, it’s uncomfortable, my heart is pounding, I then choke and suffocate multiple times a night, I feel like I’m being strangulated. I get numbness in my arms and legs, this has been going on for years. I had an MRI years ago and my C1 & C2 are joined, a birth defect. Nothing has ever been said about it.
I always have a nagging dull pain back of my throat.
My tongue also feels like it’s burning.

My gut does not work! I had 6 colonoscopys to date - the 6th was CT one… nothing moves through… the nerves don’t work, I was diagnosed with slow gut transit and take nerve meds called Resolor (precolopride) to make it work. I now believe this is because the Vagas nerve is compressed. But of course when I mentioned this to the ENT Dr he said no it wouldn’t do that and rolled his eyes.

Thanks for creating this site, I’ve no where to go really. I’m sorry to read about people in so much pain, I have mild discomfort that I’ve been living with. But I feel I’m in a state of nervous system overdrive at all times. I teach yoga & do plenty of breath work to help calm, but nothing can totally soothe my system. Also I dred going to sleep - does anyone actually find a comfortable sleeping position! Thanks again

[Jules]

Hi & welcome to the site!
Sounds awful your symptoms at night…yes, the styloids can definitely compress the Vagus nerve, quite a few members have had digestion problems and also heart arrythmias, plus anxiety. Unfortunately even though there’s the internet plus quite alot of published research papers now, there is still an awful lots of ignorance about ES. (The doctor at my local hospital told me that the styloids can’t compress blood vessels but I had bilateral IJV compression, I wish I could’ve seen him again with my CT results! )
Other members have had the strangled sensation, plus Burning Mouth Syndrome. Also the numbness in your arms could be the Accessory nerve being compressed, or perhaps linked to your other neck issues. Re sleeping, lots of us find that sleeping semi-upright can help, so with a wedge pillow maybe, so that might be worth a try. Nerve pain meds can help with burning mouth, or a bicarbonate of soda solution rinse. Sounds like you’re doing all you can to keep your nervous system as relaxed as possible with the breathing etc!
We only know of one doctor who has done ES surgery in Scotland:
Mr Currie, Crosshouse Hospital, Kilmarnock, Ayrshire (also does private work with Bupa) https://finder.bupa.co.uk/Consultant/view/34920/mr_wj_roger
Although I’m not sure that anyone’s had surgery with him for a long time! Might be worth looking in to…As for your ENT, you’re right to be wary of having surgery with him if he’s not done surgery before. Intra-oral is generally not so good to remove the styloids, as not as much can be removed, but some members have had very good results with it, and also with robotic surgery. We have some suggestions for questions to ask a doctor if you’re not sure how experienced they are, here’s the list:

1. How many ES surgeries have they done and what was the success rate?
2. Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
3. You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
4. If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
5. There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
6. Will it be a day case surgery or will you need to stay in?
7. Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
8. Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
9. What painkillers will be prescribed afterwards.
10. Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
    I hope this helps & that you can find someone you’re confident with- Skull Base surgeons/ Otolaryngologists, or Head & Neck Cancer surgeons are worth trying otherwise as they operate in the same area routinely.

[Lemontree]

Thank you so much this is so very useful. I actually phoned the secretary of that Dr here in Scotland who’s done surgery, I hope to try and get a second opinion from him, he’s in a bit away from glasgow though so not sure if that’s possible.

[Jules]

Worth travelling if you can, I think usually with the NHS you can ask to be referred to someone else where, although maybe different in Scotland. And good old NHS waiting times…!

[Lemontree]

Thanks for your reply and also thanks for your welcome note, I couldn’t navigate where that was to reply, it was very helpful. My ent Dr didn’t mention anything about compression of the arteries or nerves, he even dismissed it when I asked him if the styloids could be doing that, he said all they can do is cause a little pain in the back of my throat. I’m not even sure how I could check on this? I know my ent Dr would not be open to any discussion and would dismiss everything. He did agree on surgery so perhaps I’ll have to just go ahead and see what happens. He’ll do right side first intraorally using a robot. Thanks again

[Jules]

A CT with contrast would show any compression of the blood vessels, & symptoms can give you an idea if you might have any vascular issues- there’s info in the Newbies Guide Section about that. The scans don’t show effects on nerves, as far as I know the only scan to show that would be a FIESTA MRI scan & I don’t know if that’s available on the NHS…very few members have had that done. Let us know if you get a date for surgery!

[Lemontree]

Thanks, I had CT with contrast, nothing was mentioned of any of this. It was more to see if the styloids were elongated. He hadn’t even measured them; I had to ask him and he done it there and then. I’m so confused as to why nothing else was said.
Even when I asked about compression, he said that wouldn’t happen?
He appeared clueless to eagles.
Thanks

[Catmd]

Hi @Lemontree - I am in the US. The radiologists who reviewed my CT and CTA did not mention compression, even though it was obvious. They just typically don’t look that closely unless you go in specifically with a symptom associated directly with compression. Very few doctors really understand the complex symptoms associated with Eagle’s. I also had sleep apnea and would wake up thinking I was being strangled. Happy to tell you that went away after my second surgery. First was intraoral and the doctor just clipped the ends off. I got a little relief from dizziness but it wasn’t fully resolved. Second surgery was external approach, removing both styloids to skull base. Find the most experienced surgeon you possibly can. From my experience, the recovery from the second surgery, accessing styloids from incisions around the front of each ear, was much easier to recover from. I no longer need a cpap. The vascular compression has resolved. It takes persistence to find the right doctor here and I think it will be harder for you in Scotland. We have all been dismissed by many doctors who just don’t have a clue what Eagle’s really is. Keep advocating for yourself. Wishing the best for you on this crazy journey!