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Eagle Syndrome - Online Support Group

"Just ignore that"


#1

Hi everyone,
I’ve been following and reading this site for about 6 months now and I’m ready to share and get some opinions. Almost two years ago I noticed two large lumps between my clavicle and shoulders on both sides. I panicked and googled. Led to more panic when everything pointed to the most horrible cancers (there is no cancer history in my immediate family). I went to my pcp and showed him the lumps, and his deamenor changed, which freaked me out even more. He ordered a brain and neck ct scan. I went to the pc because I had right ear pain and I kept getting sore throats every two weeks. Then one day I woke up and my voice was gone. So back to the pcp discussion… He took an xray thinking I might have pneumonia or valley fever. Nothing showed up. I was in denial and went to my dentist because I also had developed TMJ on my right side. I’ve already got it on the left side. He said it was pretty bad and referred me to a pain specialist. They didn’t take my insurance so I never went. I then decided to try a chiropractor. She just made everything worse anxiety-wise and then they went out of business three weeks later. So I finally give in and get the ct scan. What shows up is that the lumps are just fat pads. However, they find 2 large thyroid cysts that I need an ultrasound on. At this point I haven’t seen my report I’m just going off what the nurse at the pcp’s office. Fast forward a year and my tmj is getting worse, my fingers go numb at certain times and all kinds of weird symptoms. I also notice a new lump on the left back side of my neck. Also notice my neck looks asymmetrical. I decide to take matters into my own hands and make an appointment for an ENT who specializes in neck cancer. I waited 3 months for the appointment. I had to get my records from the radiologist. I decide to read through them and on the very last page I see that the radiologist mentions ES but that I’ll need a clinical diagnosis to confirm. I go in to the ent and had a list of all my problems over the previous year. He looks at my neck, feels the new lump and says it’s a lymph node but can’t tell me why it’s there. Says my neck lumps are just fat pads. Orders my yearly thyroid ultrasound (they haven’t grown at all) and then I bring up the ES that the radiologist mentioned. He looks at me and says “just ignore that”. I was dumbfounded. I haven’t talked to a doctor about it since because I now feel so stupid. I’ve now got 2 hard limos under my jaw which, after reading on here, could be the hyoid bone. Or maybe they’re my glands. Either way, I think I’m going nuts. My anxiety is high and I don’t know how many more times my husband can answer the question “does my neck look weird?” I’m not sure what my next step should be. I’m 39-years-old and have a 7-year-old daughter. I deserve to be enjoying life and deserve answers.


#2

OH MY GOODNESS!! What is wrong w/ doctors these days?!? I think every doctor who is dismissive about ES deserves to be struck with it so (s)he can experience what we go through & have a true AHA moment or two!!

The good news for you is there is a good ES surgeon in your state - Dr. John Milligan. You should call his office & see if you can get an appointment there. If his office is far away for you, you can probably arrange to send your CT scans to his office & make an appt for a phone consult. You will feel less daunted by your symptoms once you talk to a doctor who understands ES & is willing to help you. Another option is to travel out of state to either Dr. Samji (CA) or Dr. Cognetti (PA) who are two other very experienced ES surgeons. I’m include the link to the US ES Doctor’s List below so you can easily see your options.

EaglesSyndromeUSDoctors August 2017.docx (38.3 KB)

Please let us know what you learn once you talk to a doctor “in the know”.


#3

Hopefully if you’re able to see a doctor with experience in ES they’ll have a solution for you & won’t dismiss the radiologist report- as you’ve probably read, there’ve been quite a few members who’ve had thyroid cysts, & others who’ve had enlarged lymph nodes… I hope that you’re able to get surgery!


#4

I’m so sorry to hear that…please just ignore him! Go get another opinion I just got my diagnosis on July 27th after 7 years of suffering…doctor after doctor telling me it was TMJ or acid reflux and then my tonsils…and I understand completely feeling hopeless but if it mentions it on your scan get a copy of your scan the disc and the report and bring it to another doctor and if you have to another one until you find the one that listens to you…for me nobody listened until one day a few weeks ago a dentist did and made an appointment for me with an ENT who knew exactly what I had five minutes into my first visit he ordered a ct and ES was confirmed now waiting to find out where I will be going to have surgery…Please don’t give up IGNORE HIM!


#5

My lab sheet looks very much like yours. My referring ENT has NEVER contacted me about the results although Eagle syndrome is clearly documented. I am so glad I took it upon myself to be my own advocate and get a copy for myself. Otherwise, I would still be wondering why I felt so bad.


#6

*UPDATE - I contacted one of the doctors referred in the list and unfortunately because I saw a doctor already in that same practice they will not let me see him. Instant tears. It’s their policy to not give second opinions if you’ve already seen a doctor in their practice. So I got online and requested an appointment at the other suggested clinic which I have not been to before. Total doctors seen so far leaving me with more questions than answers: 2 doctors, 1 dentist and 1 chiropractor.


#7

So sorry that you’re not getting anywhere, so frustrating for you, sending you a hug :hugs: Is there any chance you could travel a bit further? Dr Samji in California is very experienced with ES, lots of members have travelled long distances to see him, & he does phone consultations- there’s lots of info about this in past discussions, you could search for that info. Otherwise was Dr Milligan on the list in Phoenix in the same practice as the doctor you saw? I think several members have seen him.
I hope that you get somewhere soon, thinking of you…


#8

I’m so sorry! How frustrating & discouraging. Hopefully you’ll be able to get an appointment soon. If all else fails, you can get your second opinion from Dr. Samji via a phone consult. This would not obligate you to come to CA to see him or have him do surgery, but it would give you solid information to give a surgeon closer to home assuming you do have ES. You need to check to make sure your CT scan has a good view of your styloids & hyoid bone as any doctor you see regarding an ES diagnosis will rely on your CT results to diagnose you. You can request the radiologist to re-read the CT scan & add the length of your styloids to the written report. Here is your opportunity to advocate for yourself. Be assertive & stand up for what you want.


#9

After numerous phone calls today I have an appointment September 13th at Mayo Clinic. Hoping to either get a confirmed diagnosis or at least just find out in general whats going on so I can stop worrying all the time and get to feeling better. I just keep telling myself if there was nothing there why did the radiologist mention it. I’ve never heard of ES until I read my own report. I will keep everyone posted and if I have to travel to California, I will. Thank you all for the positive vibes, it really helps calm me down.


#10

Is the appt. with Dr Hinni on our list? If not I would double check that the doctor you’re seeing is familiar with ES, I know past members have often mentioned that doctors in the Mayo clinics don’t seem to believe in ES! Just don’t want you to have any more wasted trips…


#11

No, they told me Dr. Hinni would not see me for this but a Dr. Neel would.


#12

Your journey has been so difficult, I really feel for you. It sounds very familiar. I almost went to Mayo but they wanted to start at one thing and maybe move to another and I could tell I wasn’t going to get answers. I went to a doctor who knew what it could be and ordered a 3D CT of head and neck. It showed the lengths of the bones when at the same hospital the first radiologist said no way it was ES. I then had solid proof. I pray you find answers. The external surgery helped very much, though not 100%. You are not nuts and the doctors these days seem to be getting worse, not better. Stay strong. PHutch


#13

Sadly, I have to second what Jules said regarding Mayo Clinic. Perhaps the one in your state is more open to dealing with unusual health problems. There have been a number of people in various states who’ve been sorely disappointed after going to their more local Mayo Clinic because of Mayo’s reputation & then been told their problem is all in their head or that ES is a fictional ailment. I’ll be praying the Dr. Neel is not one of “those” doctors.


#14

Minoakes, What a crock!!! I had just had a baby on 12/8/1987 and the onset of my ES happened on Dec. 24th, 1987 so, guess what they told me??? I was having post-partem depression! Really? I went from hospital to hospital ER rooms and no one could tell me what was wrong with me…17 yrs. later, I moved to OKC after much prayer and three years later, I was finally diagnosed by Dr. Greg Krempl back in 2004. A week later, Dr. R. Layton Runkle performed my surgery. It was so miserable for me during that time because I missed so much with my son. I felt helpless and I just didn’t know if I could continue living. My surgery worked for me. I will say though sometimes it does feel like ES is coming back at times but, the sensation goes away.

Right now I am having some slight sensation but, I think it has to do with some acid reflux. I will go back to Dr. Krempl if I feel I might be going backwards. I hope that you pursue your healing and don’t get discouraged by what some of these doctors say. Allot of them are either inexperienced, young or arrogant. You are your own advocate and push through the BS. This blog is the best thing going for you. Let this community encourage you. Let us know how it goes.


#15

Thank you everyone for the advice and kind words. I went and picked up my report from my radiologist to get ready for my appointment next week and I decided this time to read it all the way through. Sure enough, right there on paper, “elongated and calcification of the right styloid process. Could cause ES.” My right side is the one that developed TMJ over the past year, first bite syndrome and horrible ear aches on that side. Doesn’t explain my left lymph node being raised but it’s a start. Fingers crossed Mayo can give me answers.


#16

Please keep us posted as to what you’re told. You may have to go out of state if they aren’t proactive.


#17

I thought I’d check in with an update. First of all, I would recommend Dr. Neel at Mayo Clinic in Phoenix. He listened to my story, my concerns and talked with me for 45 minutes. He did see on my report about my styloid. However, when he told me to open my jaw his exact words were “I’m not trying to be negative, but you have the worst case of TMJ I have ever seen.” He was going to order another ct and MRI but after hearing my jaw and feeling it he feels all of my issues are tmj related. I believe my TMJ was brought on by horrible posture which also screwed up my spinal alignment which doesn’t help tmj. He is so positive it’s the TMJ he canceled the ct and just wanted an MRI. It’s been 3 weeks and I’ve been doing jaw exercises and neck stretches and my jaw popping has gotten about 25% better. My next step is most likely physical therapy for how to handle the pain from the TMJ and get my neck looking normal again. Thank you everyone for all your kind words and I hope this is the start to my healing and everyone here can feel better as well.


#18

Just a word of caution - if you have TMJ & ES, the ES can totally make the TMJ symptoms worse because the elongated styloids themselves can help create jaw mal-alignment. If your jaw PT doesn’t do the trick, you may need to go back to considering styloid/ligament removal as that will also help your jaw situation.

I do hope that the PT for your jaw makes all the difference & you never have to think about ES surgery!

:four_leaf_clover::sunflower:


#19

I hope that things improve for you with the exercises & physio, & that resolves your pain. Keep us updated! :grin:


#20

I have news for you. I was diagnosed with TMJ in 2011. I have a very crooked jaw and could not bite down completely on one side. I got a bit guard, after first surgery(internal), did not need it for a short while. I started hurting again, started wearing the bitegurad. 5 years 6 months after first surgery, I just had external surgery on same side. I could not go a night and sometimes a day without the bite guard. Since surgery on Sept 5, I have not used the bite quard at all. The stylohyoid, I believe causes the bite to go off. After all, something has to move to make room for the ossified styloid, My teeth now meet. I can even chew on the left side, though my muscles have atrophied… I still have a misaligned jaw from birth, but no more jaw popping since waking up from surgery.