Feeling scared

Just had appointment with maxillofacial surgeon he agreed it was eagles but said he was more concerned about the swollen lymph node on left side and has ordered an ultrasound with biopsy also had bloods done and they are checking cancer markers I go back in 3 weeks for results and he’ll discuss surgery when he knows what we’re dealing with.

Hi Ams,

A swollen lymph gland can be a symptom of Eagle Syndrome. My glands in my neck were a bit enlarged & tender from ES, but interestingly, my doctor never commented on that. The problem did go away after ES surgery. Hopefully that’s all that’s causing your lymph gland inflammation.

I’ll pray for the best possible outcome from your testing. Does your doctor do ES surgery?

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Not that I know of but he specialises in head and kneck cancers and jaw problems he operated on my throat few years ago when he removed 2 nodules that turned out to be sqaumous cell carcinoma (benign) I think that’s what’s scaring me I carry the bracc2 gene :cry:


That is understandable, must be scary having had problems before…but quite a few members have had enlarged lymph nodes alongside ES, we’ve had a discussion recently. The discussions are searchable by topic, so if you use the magnifying glass icon you can have a look.
Hope the test results come back all clear, thinking of you…

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That actually makes me feel better thank you guys x

Wishing you all the best… Hope you get the type of care you need to relieve your pain!

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I’m glad you’re seeing a doctor you’ve had experience with & trust to diagnose you properly. I’m also glad your previous nodules were benign.


Thanks it helps to know that others have experience of swollen lymph nodes too x

Being diagnosed with ES is more than half the battle! Once you get a diagnosis surgery is the only thing that will get rid of the problems. Once I got diagnosed, after 17 years, my life changed…it was a miserable life during those 17 yrs. I am fine now and in Jan. I will go back to see the doctor that diagnosed me just to make sure nothing is growing back.

That’s great news hope it all goes well in January x😘

The only reason I am going back to see Dr. Krempl is because I want to make sure everything is going okay. Last time I saw him was back in 2004. The physician who actually did the surgery has passed already.

Dear, Do not worry, Eagle Syndrome is a very rare disease, its symptoms vary from one person to another, and due to the lack of cases of this disease, the doctors do not have enough experience. I think that the enlargement of the lymph glands is caused by the Eagle syndrome

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Awe thanks for your support things have went from bad to worse I’m now referred to a new surgeon that specialises in head and neck cancers I had a recent mammogram and they found a pea size lump under my left arm but I’m optimistic that it’s eagles causing the lymph nodes to swell iv been thinking a lot and I’ve decided to lodge a complaint against the NHS especially as they have missed vital info over the last 3years leaving me to suffer x

hope that it’s nothing serious , thinking of you…hope that the complaint gets you somewhere too. Let us know how you get on…:hugs:

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I will do thanks x

Hi all! I am new to this site. I’ve been reading the entries for a few months. I was diagnosed in August with bilateral Eagles Syndrome. Left side ossified and right side extremely long. I was diagnosed by a dentist. I have been suffering from symptoms since 2011, many doctors, 9 specialists at Mayo and no one could figure it out. Went to the dentist for a painful tooth, he did ct scan of my mouth and jaw and found it. The next issue was finding a doctor. I found one an hour away from home who does this kind of surgery. He was wanting to do a neck dissection, remove my salivary gland and multiple lymph nodes. I was scheduled for October 30th, left side only. My anxiety and angst was so high, my gut screaming no. So I cancelled my surgery. I felt beyond a doubt he was not the right one. Within a month I had an appointment with a Dr. two states away. He was very confident. 26 years experience in this field, his specialty is neck and head cancer but had done many Eagles surgeries orally and externally. He felt that he could remove both of mine, one surgery, intraorally, all symptoms gone and they will not regrow. I felt safe with him and never one moment of anxiety. I had surgery this past Tuesday the 4th. I can taste again. I can smell again. The neck and arm pain completely gone. I do still have ear pain which he said would take time due to the nerve damage, which he feels will totally reverse in time. I believe him. I have not had one pain med. I take Tylenol extra strength only and steroids to keep swelling down. Also antibiotics and no real food for a couple of weeks. He was able to get all of both of them out up to the original ligament. They were both ossified. The right side became ossified somewhere between August and now. He cut them off, filed them down and rounded them. He told me they will NOT grow back. I believe him. It may be because I have been in such horrible pain for 7 years that this doesn’t seem much worse than a really bad day of dealing with Eagles. All I know is I am thankful. I was close to giving up and living like that the rest of my life. Please never give up. The answer is there. Follow your gut. I am looking forward to getting my life back, all of it. Next year at this time I plan on being off of disability and back in the work force. I feel motivated and excited. My left side was 4 inches and right side almost 6 inches. Neck pain completely gone. Amazing doesn’t describe the feeling.


Omg that sounds wonderful so glad you got it all sorted not long to wait now I have one surgeon on Monday then the biopsy on Wednesday and I see new surgeon same day so hopefully I get answers get well soon x

Ams…I wish you the best! I am absolutely amazed at the outcome and how quickly things got better. I realize some of the symptoms will take some time but considering I have been living like this for so many years, a little bit longer is not a big issue. Please keep posting your updates. Once the diagnosis came it all happened pretty quickly. Mine were extreme, with the left one being near an artery. I had a lot of mini strokes over the past few years and no one could figure out why. Apparently Eagles Syndrome can cause a lot of different symptoms.

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So glad that you found the right doctor & that surgery has gone well for you! It’s hard when you’re in pain & you just want to get something done quickly, but your story shows that it’s worth holding fire until you find the right doctor.
Thank you for sharing your ES story; it’s a great encouragement for others, & keep healing!!