Really pleased to be here. I’m new to the group but I’ve visited a few times over the years and found it very useful.
I was diagnosed with bilateral ES 2-years ago after complaining of a lump in my throat. Despite my GP telling me it was anxiety and suggesting medication, I persisted and was given a CT scan via the local NHS ENT (the process was actually only a few months in total). I wasn’t given much information except that the right hand side was longer despite the symptoms being on the left. 2 years later, I’m experiencing sharpish pain and a rough texture sensation near my tonsils, and I don’t have enough info to know if it is caused by ES. My GP has pretty much told me it’s in my head (they looked in my mouth but didn’t investigate the affected area). But I have felt boney protrusions at the back of my throat and, on the left hand side, the surrounding tissue feels displaced and hard compared to the opposite side. Has anyone else experienced this?
I find myself panicking on a daily basis and the discomfort is impossible to ignore. Does anyone have any techniques to take their mind off it?
Of course this is impossible to ignore. It absolutely stinks! I felt quite manic some days with this “click” I had when I swallowed. It made me want to run from my body many times. You have a diagnosis, you found us…you’re moving forward with this. Now it’s time to consider whether you are up for surgical treatment as this is the only “cure”. Your GP’s response is silly. He/she would be humbled to the floor if they felt what you feel for 5 seconds. Find someone new? Ultimate you’ll need to find a specialist who treats ES in the end. I took anti-depressants to help my mind slow down a bit and to help me sleep better at night while I was sorting all this out. Having a surgery date was a huge mood booster for me even though it was a 2 month wait. You’ll see once you start taking steps toward treatment that there’s a benefit to seeing a light at the end. I used lots of mental images like seeing myself ride a bike around my neighborhood with my kids when I would start to despair. My first surgery was two weeks ago (instant relief) and I’m using that same image to help me look forward to having my full energy back soon. Depend on this forum, it is extremely important to have community during hard times and there’s so much good information to be gained by hearing other people’s experience.
Glad you posted & welcome (back). The length of the styloid is not always the factor that determines whether or not a styloid process will produce ES symptoms. An extra thick, angled or curvy styloid w/o a lot of extra length can be just as symptomatic as a very long styloid. It all comes down to what the bone is irritating as far as nerves & vascular tissues go. Crossover symptoms can also occur because of the way our nerves, fascia, & vascular tissues wind around in that area of our necks.
The symptoms you’re feeling in your throat, especially the bony protrusions, are likely your styloids as they can be felt in the throat when elongated. Both of my styloids could be felt in my throat. Additionally, I could feel my left one under my jaw & at the base of my tongue (back by my throat) & the right one behind my ear before they were removed. It was kind of creepy.
Non-surgical options include trying lidocaine patches on your neck or a lidocaine or cortisone shot in your neck. Some people get temporary symptom relief from these. Other things you can try are ice or heat on your neck. The only real solution for ES recovery is surgery & there are at least 2 experienced (& maybe 3 w/ the addition of a new one in London) ES surgeons in GB. You may have to travel for surgery with an experienced doctor, but many people on this forum have had to do so.
Check out the Doctor’s List in the link below:
OtherCountryEaglesSyndromeDoctors 2017.docx (22.5 KB)
@SewMomma - thanks for the supportive words. It’s really reassuring to hear that someone else has gone through this and having a positive outcome.
Last fall was a dark time for me. No one wants weird medical issues! LOTS of positive outcomes on here. Start posting your calls/check ups/appointments and we’ll be with you every step!
Thanks @Isaiah_40_31 - that’s reassuring to hear your symptoms too. It is kind of creepy, one of them feels like it could poke through the skin if I added enough pressure.
It’s good to hear about the different treatments. I’ll certainly look into those as well as surgery. Thank you for the list of surgeons. Really great to see a name from BRI, which is reasonably local.
@SewMomma Thank you for sharing. Hearing your positive story is really helpful. I’m looking forward to the next steps and sharing my journey.
If you have any unpleasant thought that pops into your head from now on, replace it with an endorsement that you reached out and know that we are interested in hearing all about your journey!
Why are you still suffering with this? If doctor’s are not listening, you need to fire them and move on…I suffered so much (17yrs!) because of doctors who said I was depressed, I had just had a baby Dec. 8, 1987 and the sticking/poking sensation started on Dec. 24, 1987. My situation was painful and I could feel the sensation 24/7. I was hell on Earth. I finally moved to OKC and it was then that I got diagnosed. Seventeen years later. If you are in pain and your styloid is what is causing the pain, do the surgery! I am so much better and the quality of my life is good.
SewMomma, I am so glad that you felt instant relief. That was me! It was a long recovery for me b/c I am a diabetic but, I am well…No pain.
Mafre, I’ve just sent you a welcome message with some info about doctors. I think all of us have a spell of obsessing about symptoms, it’s hard not to when you know that you have a long bone sticking in your throat, squashing nerves or blood vessels!! I was told they couldn’t operate unless I was suicidal with pain! So I went away & lived with it for a year or more (as you’ve already done!), but then symptoms worsened for me, & luckily I found out about Mr Axon on here & was able to have surgery both sides. So it is a personal decision to weigh up whether you want to have surgery, or try other options first.
@Hadassa - Wow 17 yrs! That must have been tough to say the least. I’ve just pushed for an ENT appointment and my GP has now requested it (they said I should hear back in the next 3 weeks with a slate) but I was also told that I need to prepare myself that it won’t be symptoms of ES and the possibility its all in my mind. I dont see the same GP every time so hopefully next time I’ll get someone a bit more sympathetic!
Thanks @Jules - it certainly has created a dark period in my life and its so hard at the moment not to obsess about the different sensations I’m getting in the back of my mouth / throat. I’ve found myself cancelling a lot of social stuff as I can’t focus and have had panic attacks at work. I’ve got an ENT appointment coming up in the near future so I’m hoping to get some more information about my options and reassurance about my symptoms.
Cancelled stuff here too…ran out of mass quickly instead of chatting with friends, shortened family gatherings so I wouldn’t have to talk about it. When it starts to affect your quality of life, something must be done!
I don’t want to be doom & gloom, but don’t get your hopes up too much about the appt.; even with quite experienced doctors there can be scepticism about symptoms, especially the weirder ones! It’s a good idea to focus on the well known ones like poking in throat sensation, difficulty swallowing and pain. Also because doctors don’t want to give false hope, they can sometimes not be overly optimistic about the benefits of surgery, but as long as the surgeon removes as much off as possible, & smoothes off whats left, then most people feel that surgery helps them. Hope your appt. does go well!
So true. An ENT surgeon said to me “I don’t know what’s going on with you but it’s not Eagle syndrome”. He. Was. Wrong.
Thanks for the heads up. The ENT department I’m going to diagnosed me before and seemed well informed. They told me to return if I needed to at any point - it’s my GPs that I’ve found to be a barrier so far. I’ll see what happens at the appointment but I’ll certainly take your advice and won’t be mentioning any outlying symptoms. It’s actually the bone protruding into my throat and the sensation around that area that is my main concern and I can point to it and literally touch it so hopefully they’ll at least investigate that. Since the last few months this boney protrusion has also occurred with a sore throat, which I’m kind of hoping is my silent reflux due to the stress, but I’m seeing my GP separately about that. In the meantime, I’ve booked a dentist appointment this coming Monday to get their thoughts as it’s becoming quite sharp, painful and unbearable and I need some reassurance that it’s not something more sinister.
My ENT doctor in Bristol (2 years ago) was actually pretty helpful and reassuring and gave me a diagnosis from the CT scan. I’m not sure I’m looking for surgery at this stage as it’s only in the last 2 months that’s its become painful, but I want to look into my options and be reassured that what’s going on at the back of my mouth is related to ES.
Great call. Surgery should be a “sure thing” in your mind so you can stay strong and patient during recovery.
Update: I went to the dentist yesterday and was reassured when they told me they could feel the styloid and the tissue around it looked fine. The styloid hadn’t broken through the skin. They said I had quite large taste buds which could be irritating the area and making me more aware of it. This is the first time someone else has identified it as actually coming into my throat so I feel relieved that I’m not going crazy. I’ve also been given Lanzoprozole by a new GP as I had a burning sensation around the tonsil/styloid area and they thought it may be being irritated by acid from my stomach. I discovered that the ENT appointment that my other GP booked for me wasn’t about the ES as I requested but instead is gastro related which is really frustrating.