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Eagle Syndrome - Online Support Group

Does it sound like Eagle’s?


#1

I have severe pain in the back of my throat for going on 20 months now! I have been treated for gerd, and had a scope done… Done everything I can from diet to pain meds to help with the pain… Nothing seems to help the pain fluctuates from time to time but it’s a feeling of a foreign object caught in the throat. I never even heard about ES til I met with my pain management doctor and he mentione it… I wanna know about you guy’s experiences and see if it is relatable… If I’m a candidate for surgery etc…
Thanks so much,
Nick


#2

Hi VCKid1982
I have not yet seen the surgeon to get confirmation on everything and see what can be done but I have been diagnosed by my ENT based on history and palpable mass under my jaw. I have had several scans and they confirm it as well. The first thing you will probably need to do is get a CT scan so you and the doctor can see what’s going on. There are many folks on this forum that are very knowledgeable on this subject and most of the ins and outs. You will be hearing from several of them pretty promptly. Your symptoms sound very much like ES, and I think you are on the right track. Thank goodness the pain management doctor informed you of this Eagle thing. Because, like you, most of us have never heard of it before and would never have known what to research! I hope your journey through this is a short one and hopefully additional symptom free. Sometimes the process can go on for a bit, so try your best to relax and be patient. It will get better now that you know what you are looking for. I suspect I have had ES for 20 plus years and just now getting diagnosed. I have MANY painful symptoms and am sooooo ready to be rid of them.


#3

There’s lots of info in the Newbies guide section, so you could have a read up about all the common symptoms etc., & see if you think that it’s likely- there could be other symptoms you’re having which are common too. A foreign object sensation is one of the most common ones…
A CT scan would be good to see if the styloid processes are elongated (but the radiologist also needs to look at the width & angle too), or if the stylohyoid ligaments are calcified as well. If you’re able to get a CT scan done, then make sure it’s requested that it’s evaluated for ES. Then once that’s done, you can take it from there as to what treatment you want. If you do consider surgery, there’s a list of doctors familiar with ES in the Doctors Info section, I’d suggest seeing someone with experience, even if you have to travel, as it can be a tricky operation.
Best wishes in your journey!


#4

Has anybody noticed that certain foods trigger different pain reactions. I read about GI symptoms but my diets seems to play a key role into how I am feeling. I think milk makes my phlegm thicker and that bothers my throat… Also, certain foods seem to really effect my throat poorly, tomatoes, alcohol, caffeinated drinks. I was previously diagnosed with Laryngeal Sensroy Neuropathy and am wondering what the difference is…
Thanks,

NIck


#5

If you look into an anti-inflammatory diet, I think that quite a few of those foods are on the not suggested to eat list, so they probably do upset your throat & neuropathy. Just out of interest, what symptoms do you have with the LSN? Do you have a chronic cough, or globus sensation? Just wondering if it could be anything to do with nerve irritation from ES, as that causes globus sensation? I’d never heard of LSN before, the things we learn about on here!


#6

I don’t have the coughing which is usually associated with LSN… So, it very probably could be Eagle’s syndrome but nothing confirmed! I had a cat scan but they didn’t say ES after that… My ENT never even mentioned it… wasn’t til pain meds guy saw me that he mentioned ES???


#7

It’ll be interesting if you do get treatment for ES to see if it helps! It’s very impressive that your pain doc thought of it, what a star!


#8

I can totally sympathize. I too was being treated for acid reflux/lpr. After the endoscopy the GI doc said I don’t have it. I was at a loss until I saw an ENT who mentioned Eagles. I got a CT but the radiologist missed it. Luckily I have a stellar ENT who looked at the scans himself. I was then diagnosed with ES.

Other symptoms are similar, inflammatory food make it worse. Going heavy anti inflammatory and alkaline seems to help. Also, being cautious of the area during exercise also helps.

My surgery is 8/7 so I can provide an update on symptoms then.

I hope you are able to get this resolved. Like previously mentioned, knowing what “it” is really helps in the symptom management.


#9

Is the pain on one side/both sides? I have so many symptoms from ES but no doctors put it together until I stuck my finger on the spot in my throat that was hurting and noticed a pointed bony mass in my throat that increased the pain when I pressed on it. I also had a similar object on the other side but it only had a stabbing pain when pressed but otherwise, no pain. I asked my GP and he referred me to an ENT who said it could be ES. He did an x-ray and saw it but wasn’t convinced that was my problem. He referred me to another ENT who was also a head and neck surgeon that specialized in cancer. After more tests and multiple appointments he finally agreed to do the surgery. 1st he was going to remove the tonsil to get at it then he changed his mind and decided he could get at it by cutting the throat in front of the tonsil. I was so hopeful that this would resolve my problem, but when I woke up from the surgery he told me that the styloid process was on the facial nerve and he was only able to remove the tip of the SP for fear of damaging the nerve. That was 2 years ago and I received no relief. I have a phone consult with Dr Samji tomorrow and am praying for some relief.
I believe that if more ENT’s and other Dr’s would do a digital exam of the throat on patients with throat pain/ear pain, etc with no visible cause, instead of prescribing antibiotics and sending them home, the number of people diagnosed with ES would skyrocket and more of us would get relief sooner. Just my opinion. Good luck to you and God bless.


#10

Hope your phone consult goes well, & that Dr Samji can help you. Let us know how you get on…


#11

Thanks Jules. I’ll update.


#12

I hope that when you have the surgery, it will totally eliminate the sensation in the back of your throat. I had that and sometimes that globus feeling. It took 17 yrs to finally get diagnosed. Another symptom or feeling was like something was under my tongue and I couldn’t get rid of that sensation. I was so exhausted from everything I was dealing with. I only wish good for all of you who are still suffering with ES. It is so hard to live this way. Blessings


#13

VCKid1982 -
You can request to have the radiologist re-read your CT scan to specifically look for Eagle Syndrome. Request that (s)he also measure your styloid processes & look for evidence of stylohyoid ligament calcification.


#14

So many thanks to all the people that have posted their trials and tribulations. It is very comforting to know other people have had such difficulty with this long journey trying to figure out what the heck is wrong. So many doctors,25 I think, have basically blown me off. A mandibular joint replacement, then a 4 level neck fusion, without relief of my daily pain for 4 1/2 years.
It was This site I stumbled upon this past summer, and a dentist that said three years ago something about Eagles Syndrome, that I basically diagnosed myself. I called Dr. Samji’s Office in June 2018, and had a CT sent to him. Then I had a phone consultation with him. My surgery to take out this “tusk” is scheduled for 8/13/18!!! I am counting down the days now. I had to go off my Advil for the surgery, because of bleeding tendencies and can only take Tylenol, which is a little difficult…but I’m going to do it!!
I am a retired nurse and I am still baffled at how many doctors don’t have a clue about this obscure disease.
I have the same problem on the other side but not as painful, however I am going to get that one cut out in 6 months. It is causing a very loud swishing sound in my ear, that I’ve had for 27 years. Hopefully my vessels can wait for 6 months, because the pain on the left is just too much to put up with!!
Never give up is my new Motto!!!


#15

Has Dr. Samji agreed to do the most painful side first? He insisted on doing my less painful side first because of the angle of the styloid. I begged him to reconsider even up to the morning of my first surgery but to no avail. In the end, he proved to be right about the urgency of removing the one he chose as it turned out to be causing some scary vascular symptoms (you just can’t tell which one is causing what till one is removed). Just another proof that he is a truly amazing doctor & surgeon.

:+1:


#16

Good luck to you on your surgery. Dr Samji is doing my surgery on 8/27/18. I know about counting the days and about the long list of doctors over many years. I don’t know how it is for most of you but usually I start my mornings functional but by mid day I’m in pain and by the end of the day I’m miserable and unable to concentrate on anything but how miserable I am. What’s strange is that sometimes I get good days, sometimes 2 or 3 in a row but then the beast is back. Ugh. Here’s to Dr Samji, may the Lord guide his hands during our surgeries and provide us with speedy recoveries.

God Bless.


#17

Best wishes to both of you, & I hope that you both find the time passes quickly before your ops!


#18

Thank you for that

Nice prayer for our surgeries…

Prayers back at you👍


#19

It’s nice to have breaks from the storm. I recall having good days & not so good days in my ES days as well.
I’m so thankful for Dr. Samji’s skill as a surgeon. I’m sure God guided his hands during my surgeries because I had great peace going into both of them.

Post op healing can be challenging but the rewards down the road are worth the pain.

:+1:


#20

gbr…CONGRATS! So happy you have found the right path to reclaiming your life! From all that I have read here, you will be in good hands. I like your new motto…I have recently adopted it as well. Of course we will all want to hear all about how things come out as you are able. I am amazed that you are able to get by on advil or tylenol. If I didn’t have my tramadol and cyclobeniprene, I would have been a gonner years ago.
It is amazing at how many medical peeps have never heard of this evil. Rest assured that I am telling everyone I see about it. I have even called all of the specialists that I have seen over the years to let them know why all of my tests come back negative for everything. Getting loud may not be the proper way to go about it, but it seems to be the only thing that works! And by the way…27 years is just too dang long! :astonished: