Air quotes? Really, dude? You can’t do that to patients! And the comment about things not causing problems overnight - well one day we feel fine, the next we start noticing things. I say all the time my swallowing troubles came “out of nowhere” last January and my click “popped up” last summer. So that language is bogus and not helpful at all.
I suppose it’s good to see surgery as a “last resort” to be extra cautious. Did he happen to mention the name of the surgeon he would refer you to? Can you see yourself buying time for a couple months just to get to that next step? Depending on your insurance you could just bypass this guy you saw today and never see him again and go straight to an ES surgeon?
It’s so good you’re on here now. We are all here for you. I came on here after my awful appt in October where a 20 year veteran surgeon said “this is not Eagles, I don’t know what that click is but it’s not your ligament”. Well, the ligament is gone now and the click is ancient history, no thanks to him.
You’re still pretty early in your journey if you can tolerate a little more time with symptoms. I think it’s wise to be “all in” when it comes to surgery and for me personally - I was there and I’m totally there with the second side despite having a crooked tongue after the first surgery. It’s good to be sure I guess is what I’m saying. To me your styloids look like trouble but of course I’m not a doctor.
What do you feel like the next step is? Seeing a physical therapist? It may help. But it sounds awfully familiar to when I went to a chiropractor last October who pushed so hard on my neck that he broke skin. I had an open cut on my neck and was hopeless for a week last fall - we’ve all had hazy days in our journeys like you said. Better days ahead - one way or another. .
So frustrating for you! I agree that surgery shouldn’t be rushed into, but his attitude was very patronising- I had a similar experience with the consultant I saw; he did diagnose me but was very dismissive of vascular symptoms & the pain as well! So we’ve all been there…
I’m UK so I don’t really understand the US healthcare system; would it be possible for you to send your CT results to Dr Samji or Dr Cognetti at all?
I hope that you get some help soon, thinking of you & feel free to get it off your chest here 
@amanda81 - it sounds like an incredibly frustrating appointment. My GP recently BET me that my ES pain was all in my head even though I’d already been diagnosed. This week I had an ENT doctor look at it, just opened my mouth pointed to the area and he saw it straight away and referred me on to a hospital that is able to do the surgery (or at least advise on it). I’ve just found being persistent helps no matter the attitude of the GP/doctor.
Are voice changes a common symptom of ES? I’ve found I’ve had a progressively more croaky voice since an ES flare up in December but also have an urge to clear my throat all the time but when I do it’s really unsatisfying. Is that something that anyone else here has encountered?
Had trouble hitting high notes at church before surgery. Better now after one was removed.
Hi Mafre -
Vocal changes are absolutely a common symptom of ES as is the throat clearing problem you’re having. Both should resolve after you have surgery.
So glad you’ve finally gotten a referral that may result in surgery! It’s exciting to consider an end to the symptoms, eh?
They’re not a commonly known symptom, but quite a few members have noticed this, especially singers & teachers. There is a research paper on it but am on my phone so can’t find the link easily!
Thanks everyone for the encouragement. I think I will give the physical therapy a go. For the moment the discomfort is tolerable and my voice does seem to be getting stronger. My main complaint now is the tightness in my neck the dull ache along everything on the right side. Ear, jaw,neck and throat. If the pain gets unbearable then I will push the issue with someone that has experience in ES. I’m trying not to obsess but it’s hard when I can’t understand how something sticking into my throat can be healthy and is trying to be explained away. It obviously isn’t going to disappear. I’ve got my consultation for the pt on Monday. Hoping that I can get some relief for this constant “crick” in my neck feeling. I think I’m still in shock with how dismissive doctors are with this syndrome. He had my scans in his hands and felt it poking into my throat… but it can’t possibly be the reason I’m feeling the way I do. 
We’re here for you. We truly just want you to feel your best 
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Hi amanda81,
Your plan sounds like a good one & hopefully will help you over the long term. It’s nice to be able to postpone surgery as long as possible. Please keep us in the loop as your PT progresses.
I had physio as I had a disc problem C5-C6, it was only gentle stretches, and helped a surprising amount, but I would be very wary if the physio wants to do any manipulation as this could do damage…
Hello everyone,
So I’ve been to physical therapy 3 times so far and it has really helped the crick in my neck and shoulder pain. My voice is definitely stronger and people can hardly notice the rasp I feel from time to time. I feel like I’ve done all I can do on my end as far as getting myself well and following doctors orders… and of course this pain in my throat, foreign body sensation, and the discomfort I feel in the front side of my neck are all there. The burning feeling has been the most aggravating. My ear feels like it is holding fluid as well. I have been able to sing… not 100% percent yet, but it usually leaves me so sore it isn’t worth it. : (( All symptoms are still on the right side only this far. It’s still bearable at the moment. I’m planning on pursuing someone that has experience in ES in May. (I’m having surgery in April pertaining to something else) Just trying to make it til’ then. There’s no way something that you can feel poking through your neck can be ok to try and live with. Does it continue to grow?!? I always feel like I ramble on here. Sorry!! Feels so good to get things off my chest though.
So funny I went through alllll the things that were recommended to me - time and money out the window - just to “prove” nothing would work. You’ve done that - great job. Sounds like you’ve got some of your life back but the soreness is just not going to cut it. 
Get your other thing out of the way - sounds wise. Maybe between now and then even something will come across your radar to help with your ES journey.
Don’t leave us for too long - let us know how you feel after your procedure in April! 
Hi amanda81,
My opinion (I’m not a doctor): I believe the styloid/ligament does continue to calcify/grow based on my experience. I went 9 months between my ES surgeries. By the time I had the second one, it felt like my remaining styloid must have grown longer. I base my premise on the substantial increase in pain & other symptoms over the months between my first & second ES surgeries. Additionally, the fact that in a few cases, people who’ve only had their styloids shortened, not fully resected, have had regrowth is evidence that they can continue to grow.
I’m glad you tried the recommended PT & that it helped w/ some of the symptoms you struggle with. I, too, hope your procedure in April goes w/o a hitch so you’re rarin’ & ready to hit those styloids head on come May!
Hope that things go well in April…& that the waiting times passes quickly for you…
Who know how fast they grow, it’s weird that some people’s symptoms come on suddenly, others gradual; mine were gradual but then the vascular symptoms started which I didn’t have initially!
Thanks everyone…so so much! I guess I’m praying I’ll wake up one day and it will be gone! The first thing I do when I wake up every morning is swallow to see if that pain is still there… so far, of course, it has been. What causes it to just burn with pain some days and others not bother me so much? Today, needless to say, has been one of those bad days.
It’s so strange how the symptoms can vary day to day, sometimes you know what’s cause it, but not always…lets hop that you have some more better days…
Hi amanda81 -
I, too, experienced the lessening & worsening of ES symptoms. It’s a very common experience & as Jules said, we’re not sure what causes the changes. I was always thankful for the days where my pain level was lower.
Written requests tend to be taken more seriously since there is a paper trail.
It’s also helpful to ask the name of anyone who is speaking to you on the phone. We are in the age where you need to be detailed for our own benefit. The people you question sit up and look up the info once you have a letter with a cc or ask the name of the person who is putting you off. Hang in there.
Something that helped one of my doctors to “snap out of it”:
I told him that in med school he was told “When you hear hoofbeats, think of horses not zebras” - That this quote should be rewritten. It should be:
"When you hear hoofbeats, think of horses not unicorns, because zebras exist . Eagle Syndrome exists. Human Physical problems do not have boundaries the way animals have a habitat. Human Rare Diseases EXIST Rare does not mean to not look for it, and as far as the 1940’s quote by Dr. Theodore Woodward, if he weren’t such an old man I’d give Dr. Theodore Woodward a hard right hook to the jaw. When I look back at how many antacids were prescribes for my ‘acid reflux’ because of this useless quote I want a HUGE physical outlet LOL but I’ll probably end up in a hospital and I have had enough of those. Tell your doctors that rare does not mean it doesn’t exist, and tell him that those who have survived such outdated anecdotes want to do much more than “thank” the author. Sheesh.
Discounting your pain is in contradiction to their Hippocratic oath of “First do no harm” when ‘rare’ is ignored. ‘Rare’ still needs to be checked. Was any ‘Rare’ disease discovered on a patient by not checking? Not being heard causes harm. Saying it’s rare and not checking is in contradiction of their oath.
The way I finally was heard was to use humor. It was tough, but it knocked the doctors into thinking of connections instead of exclusions. Maybe tell your doctor there’s a comedian who is naming names in a stand up routine about rare disorders being ignored in the medical field - because it’s ludicrous. OK it’s a weird way to sum up, but I’m at a loss LOL. We are stuck being nice to people otherwise we don’t get help, but humor really does help. Hang in there. Someday you’ll get to rant like me LOL.
I haven’t been on in a couple of weeks. Just wanted to touch base. As of the last few days I’ve felt better than I have in a long time. NO PAIN! I’m able to sing again without being in pain. Thank you Jesus!! I’m so thankful for the good days. I haven’t been to physical therapy this week in fear of it causing what I call a flare up. I try to be optimistic but I still believe it’s just dormant right now and it will just be a matter of time before it causes me pain again. But for now I’m going to appreciate the good days!! I again can’t thank each of you enough for the support you have shown me!
Brilliant, enjoy a pain free time! Hope it lasts for a very long time for you…