Hi everyone, I’m in a dilemma. I have just been given the ‘most likely’ diagnosis of Eagle Syndrome now that everything else has been eliminated. But, of course, nothing is guaranteed & I’m scared to have the surgery if it changes nothing - what if it’s not Eagles?! I thought I would ask if anyone has had the same symptoms as me. I started with the feeling of a ‘stone’ caught under the back corner of my tongue, earache, sore throat, & burning along one side of my tongue. My styloid is 42mm - which my surgeon (Mr Axon) says is not that long; he also says that he has not had patients with the burning tongue - and that worries me (sometimes I feel as if a swarm of angry bees are in my whole mouth!) I feel that there is a sharp stick in my throat - it really hurts when I yawn & talk. But… I’m not in severe pain, it’s just always there & is usually worse in the evening. Do I accept this, or do I give myself the chance of being free of it?? Dr google suggests that only severe cases should be operated on, but I don’t like living with this constant pain/irritation because it is all consuming. I’m not really scared of the surgery itself, if I knew I could go back to being the person I was a year ago, but I’m scared that it’s not Eagles.
Hi mouse & welcome to the site!
Firstly Mr Axon is very experienced, but no surgeon will say definitely that your symptoms will go with surgery, so as not to disappoint people; the only way really to tell is to wait & see after surgery…
4.2cm is fairly long; the average is 2.5 cms, so plenty long enough to cause symptoms, & the angle of the styloid processes can cause symptoms too. Some members have had burning mouth syndrome, I have it a bit but mine’s not gone with surgery. (Sometimes nerve pain medications can help with that, & also a diluted bicarb of soda mouth rinse). The other symptoms could well be due to ES too, they’re quite common.
Surgery is a personal decision- there are risks, but with an experienced surgeon like Mr Axon those are lessened. But it does depend on how your quality of life is being affected- I could live with the nerve pain I had, but started getting vascular symptoms too & that was grim. Mr Axon did both my surgeries; the vascular symptoms have improved massively, the nerve pain has improved although I still need medication, but the neck and ear pain have gone. I have a bit of numbness around my ears, which is quite common after surgery.
Mr Axon does have a long waiting list, not sure if he gave you an idea of when he could do surgery? We have a couple of other members who are waiting for surgery at the moment…so you may have a little while to think about it?
Hi Jules. Thank you so much for your response. I have seen Mr Axon as a private patient so he says he could do the op in April - although he was at pains to point out that there’s no need to rush. However, I think I’ll kick myself if I feel the same in the summer & realise that it could have all been done by then. I know it’s a personal decision but I just wanted to be sure that others have had the tongue symptoms; I will blame myself if I have it done & there’s no improvement, & that scares me. Interestingly, I have seen 3 ENT surgeons (Mr Axon being the 3rd) & no-one has suggested medication.
I read it online when I was looking up about burning mouth…good that you could potentially have surgery earlier; Mr Axon is the most experienced surgeon that we know of in the UK, so if you do want to have surgery then he would be a good bet.
Your symptoms sound exactly like mine. I hate the burning tongue! and the poking feeling in the back of my tongue and throat, the felling of a sore throat (though not inside my pharynx). Last month the skin on my neck felt like it was on fire that was only relieved by ice and lidocaine - it was the first, and hopefully the last time that happens!. The nerves on the rights side sometimes seem out of control. Last night it felt like I bit the back of my tongue but it was too far back on my tongue for that to happen. It is still throbbing today that I thought maybe I pulled a muscle in my tongue… A google search of sprained/pulled muscle in tongue this morning pointed to possilbe glossopharyngeal neuralgia, among other things - basically all of the symptoms of ES, but I also have additional symptoms so who knows.
I completely understanding wanting to go back to being the person you were a year ago. Do your symptoms come and go, like flare-ups? Mine does but it’s been months now since I have had relief.
I had two separate surgeries, the left side June 2019 and the right December 2019. I had horrible pain on the right 6 months after my first surgery so it was logical to get it done and over with. All of the symptoms on the left went away until a minor twinge recently, but the right never really got better. The last 2 months have been a roller coaster ride of pain and discomfort. I am due for another ct scan to see what could be happening but my insurance would only approve a transthoracic echocardiography. I think the CT would show if the bone grew back.
Surgery is a call that only you can make. It is scary and the temp paralysis after each surgery was alarming, but that did get better and my surgery healed. It helped my left side but not the right. My daughter likes to remind me that if I didnt do the surgery I would have always wondered if it would have helped. With everything that I am going through now I am sure that I would make the same decision to have the surgery.
All the best,
Hello. Thank you so much for your lovely message. My symptoms are always worse in the evening - they never go away, but start the day much reduced and then the burning feeling (like a mouth full of nettles) intensifies through the evening (throughout my mouth, not just on the affected side) The feeling of a sharp stick in the left tongue base & throat is always there & particularly painful when I yawn. I also came to the conclusion that if I don’t give the surgery a try then I’ll never know & will never have a chance of feeling better - so today I finally plucked up the courage to go on the waiting list.
May I ask what you mean by the temp paralysis after surgery? Was your surgery external? had a tonsillectomy (unnecessary as it turns out) in December & the first 10 days post op were brutal!
Best wishes, mouse
I’m so sorry to hear how bad your symptoms are. Since your first surgery was done by a surgeon who didn’t remove your styloid to the skull base, it’s possible your symptoms persisted because the bit that was left was angled enough or thick enough that it continued to irritate the nerves that are causing your symptoms. Since the symptoms have gotten worse, it’s possible you do have regrowth on that side. It’s disappointing that your insurance wouldn’t cover at least part of the cost of another diagnostic CT scan. It’s been long enough since your last one, I wonder if you could appeal that decision. Not sure how a transthoracic echocardiograpy would help solve the styloid question. That seems like a scan for the wrong part of the body, but I’m just guessing from its title.
I don’t think either of the doctors you’ve had do surgery will do revision surgery if you do have regrowth but Dr. Hackman in NC seems more willing to help people w/ regrowth.
Please keep us posted about what you learn. We’ve had several members recently who had symptoms return & have found they’ve got regrowth. Such hard news to hear.
I’ll keep you in my prayers.
So sorry that you’re still in pain, it’s been a long journey for you. I wish we could gives you answers & a cure, I don’t know what else to say…sending you a hug & praying for you🙏
Thank you both for the well wishes, prayers and advice. I saw the head neck surgeon who originally diagnosed me today. He will make a case for the insurance company to get the ct scan I need. Barring regrowth, he mentioned trigeminal and glossopharyngeal neuralgia as well as fibromyalgia. Doctors love to toss fibromyalgia out when unexplained pain is involved.
I’ll keep you posted.
HOORAY for a supportive doctor! I agree about fibromyalgia diagnoses. They seem to be a catch all & very often, Prednisone seems to be the drug of choice for treatment. I hope you don’t have any of the “algias” but regrowth isn’t a great alternative either. We’ll look forward to hearing what you learn.
Just as an example I was diagnosed in 1995, the pain was pretty severe back then and for several months, I had a few flare up over the years but long story short I did not have surgery to date, and all has been manageable, and I learn to live with it. Right now and for several years it just been a dull pain as if something kinda stuck in my throat or pressure into my ear. I’m 52 at this point and just deal with it.
Hi Jules, I am waiting for surgery with Mr Axon, it should have been done last year but lockdown has delayed it.My ES is vascular aswell and its pushed through my throat, I have faith in Mr Axon and you have confirmed how good he is.Can I ask how long you were in hospital?Did you have it done externally?Mouse, i’m sorry to jump in on your conversation x
WOW! jeffdw! That’s great news that you’ve been able to deal with your symptoms w/o having surgery. I hope that scenario continues for the remainder of your life. Surgery is no fun but has been very helpful for many of us. It’s great to know some of our members haven’t had to go that route.
Hi Jan. Absolutely no problem at all - any, and all, stories & opinions are vital to build an Eagles picture. How disappointing to have your surgery postponed by the pandemic - I hope you can have it soon… Mouse
Hi Jeff. That’s great that you have been able to get on with your life without the surgery. It makes me wonder if I should just do that too, but haven’t you ever wondered if you could have had the last 15yrs without the pain & discomfort? Perhaps I don’t realise how bad the surgery is?? Best wishes, Mouse
Hi Jules. Would you mind giving me an idea of what the post op period is like? I realise that I haven’t really considered those first couple of weeks & have no idea what to actually expect/consider. Is it really that bad? BW, mouse
It’s a personal choice for sure, but at the time it was difficult to even find anyone that knew about eagles let alone want to operate. I had revisited a couple times with some specialists all said they could do it but had never done it. I just didn’t feel like wasting time, money, hassle, etc to seek some one out of state, when there was no guarantee and or the chance to be left with more pain and other symptoms from the surgery. At present I don’t really have any pain, just a pressure felling in my right ear.
My main concern is could this led to other health problems, ie I have unexplained high blood pressure though I am in good health, not over wait, etc. I have also read articles of eagles being related to stoke due the pressure on to corridor artery, so that is little scary
Mouse, if you’ve had tonsils out as an adult, that’s a similar recovery to having intra-oral ES surgery. Most members seem to find the external surgery a bit less painful than the intra-oral, so maybe that might give you an idea of what to expect?
First couple of weeks can be painful, & there will be ups & downs, but they’re the worst. After that a gradual improvement after 6 weeks or so, although everyone’s different & surgeries are different depending on what nerves are affected etc.
Re the surgery with Mr Axon, he puts a drain in after surgery, so you’re kept in overnight. With quite a big head bandage too, which I wasn’t expecting! Personally it wasn’t too painful; I didn’t need strong painkillers once I got home, but chewing & opening my mouth wide was difficult for a couple of weeks. Driving also difficult too for 3 weeks. But my second surgery was easier! I was okay going for walks etc., but had to take it very easy with housework So it wasn’t as bad as I expected, more numbness around ears & jaw than pain, but everyone’s surgeries are different depending on the position of the styloids & what nerves are close etc.
Thank you. x