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Eagle Syndrome - Online Support Group

Great surgeon in Kansas City- Dr. Keith Sale


#1

I found an amazing surgeon in Kansas City. I had the surgery done at KU Med Center in April, 2016. Dr. Keith Sale was my surgeon. I highly recommend him. I had discovered after many years that I had Eagle’s Syndrome when a dentist friend of mine saw it on a panoramic dental xray I sent him. Dr Sale was the second ENT I visited in KC (the first said I didn’t have Eagle’s because there was nothing poking into my throat). I saw Dr. Sale and he pulled up an old head ct scan from 2011 (I had done for my sinuses) and saw the Eagle’s. He had me in surgery within a matter of just a couple of weeks. My Eagle’s was apparently one of the largest he had ever heard of, and he said that because it was so large, the surgery would be fairly straightforward. It had ossified the entire way, so he was able to make a small incision in my neck and easily locate the bone and then follow it up and then down. He removed just over 4cm of the 7 cm ossifciation. He 'tucked under" part of the hyoid and left a portion of the styloid. My recovery was pretty easy- some swallowing issues the first two days, but nothing serious. And I was back to normal in no time. My scar is not too bad. I have uploaded some pics- one of my dental xray that led to my friend diagnosing it; one of the ct scan that shows the ossified ligament in all its glory (completely missed by the radiologist!?!); one of the bone after removal; and a pic of me and my scar today-- not quite a year later.


Do you have a success story for me?
#2

Glad that it’s all gone well, and thanks for the name of the doctor. Will add it on to the next update!


#3

Hello, so glad your surgery was a sucess.
I was wondering if you wouldn’t mind sharing symptoms that you had, if any. I am struggling at locating a doctor who believes that my symptoms are related to Eagles. Thank you for sharing.


#4

Sure- I can share that. I had lots of facial, jaw and ear pain. I had pain for years and years and was always told that I had Temporomandibular Joint dysfunction or TMD (aka TMJ). I was always told to just live with it. I did several things to try to stop the tmd, but to no avail. The ear pain felt like a dull earache for two years straight, but there was never anything wrong with my ear, so they also chalked it up to tmd. I also always felt like my left side of my face and head was “droopy” (as I would tell my husband)- it just always felt kinda wonky and weird. The pain was getting worse and worse over the year previous which is why I went to a dentist. I still had my wisdom teeth and thought maybe one of them was abscessed or something of the like. I also could not turn my head to the left (I noticed that when trying to talk to the kids in the back seat of the car or driving and looking in rear view)- I never thought much about that symptom. Also, in the year prior to the surgery I was having my heart checked and wore a monitor for a couple of weeks because I kept waking up in the middle of the night with my heart racing to 120 bpm. The cardiologist could never figure out what was causing it. After my Eagle’s surgery, the surgeon said my ligament was putting pressure on the carotid artery. My assumption is that when I was sleeping, I would turn my head into such a position that it would increase that carotid pressure and cause me to wake up with my heart beating too fast. I also had some swallowing issues very periodically- like a couple of times each month I would be eating something and all of a sudden felt like I “forgot” how to swallow for a few seconds- that was always a bit panicky. I am trying to tell everyone I know about Eagle’s because my symptoms were so in line with the tmd diagnosis that there could be a lot of people that do not really have tmd and are suffering needlessly.


#5

Did you have jaw popping (TMJ symptom)? I have Eagles but trying to decide on surgery. I also have been told I have TMJ and not sure if it is Eagles or TMJ causing some of my symptoms.


#6

I did have jaw clenching that would often be bad enough to wake me up at night, but that is now gone. I just assumed it was connected to the eagles- maybe the signals being sent because of the nerve compression from the eagles was causing my brain to clench my jaw. Who knows, but it is all gone now- thankfully!!


#7

Thank you very much for sharing. I don’t have jaw pain, just my jaw feels tired, like I’ve been chewing gum all day, when I eat. Not sure that makes sense. I have headaches and neck pain 24/7, headaches mostly in my temporal region and cheek bones. I have several more symptoms. I too was told to deal with my issues by my ENT. I’m highly frustrated. Fell like I’m getting no where. I’m just tired of feeling more symptoms occur or increase. Im to the point of tears.


#8

to donihue: The first ENT I went to dismissed Eagles- even thought it was plain as day on the xray!!!-- so I don’t think many of them know even one thing about Eagles. I would recommend looking at the list of docs provided in another thread and see if there is an ENT who knows about Eagles near you. I would recommend going to a dentist, too and ask for a panoramic xray. My regular dentist and the oral surgeon both missed it, but my friend caught it (he said it is a question on their board exams). But anyway, maybe you would actually be able to see it on a panoramic xray and that would give you a bit more firepower when going in to see an ENT. I have learned from an issue with my husband that you often have to fight, fight, fight to get the docs to pay attention. That was why I kept on seeking to figure out what was going on with me and sending my xray to my friend and going to more than one ENT, etc. It is frustrating that many of them do not understand this disorder.


#9

That you for your reply. I am very interested in obtaining X-ray records. How did you get a hold of your records?


#10

I just asked for a copy- they gave me a printed one at the office. I also asked for an email copy later and they sent it to me with no trouble.


#11

Thank you very much :blush:


#12

Do you know how many Eagles surgeries Dr Sale has done?


#13

He said he has only done about ten


#14

I’m new to this site and can relate to everything in this post.
I am a Radiographer in the UK and I can promise you that the calcification is very hard to miss on any form of X-ray in that region. It is dismissed as an “incidental finding” or “normal variant” no one bothers to ask about symptoms that might lead to the diagnosis ES - lack of knowledge=lack of interest, or, as I have said elsewhere, it is easier shrugging their shoulders and offering a sympathetic smile, than it is to think outside their medical box.

All my best wishes

I am soon to have the surgery and hope to add to the numbers that “prove the Bastards wrong” !!

Graeme


#15

My report didn’t even note it as an incidental finding. And it was so huge, too. How they could not say one word about it is beyond my understanding. Maybe they just didn’t see it. I don’t know. Crazy.

I wish you the best of luck with your surgery. I’m glad you are getting it done. I hope you will feel great soon!!


#16

Pam, I appreciate the pics you sent and I am very happy for you. My ENT states my calcified ligaments were very impressive. He showed me the CT pic, and I would have to say that they are very thick and fully calcified. I’m not sure how they measure the ligaments, as my report never mentioned. Maybe it’s on a different X-ray. I just had 2 MRI done and are waiting for results. Hopefully this will show up something. I was reviewing an MRI done in 2012, and nothing in the report mentioned anything about calcified ligaments, so not sure if this is a fairly new process. The ENT felt like this has been going on for many years, and therefore my symptoms can not be a result of the calcifications of my ligaments. Also, over the past few months I get new symptoms, like tingling and burning of my tongue, ringing in ears are getting louder, along with these horribly high pitch, ear piercing, buzz that lasts 20-30 seconds. I have also noticed that there are days when some symptoms are not as noticeable, and others are. I feel like a nut job. It doesn’t make sense that symptoms would come and go. I wonder if it’s in relation to how I sleep. Let me know what you more experience ES experts think. Thank you .


#17

I would say that your new symptoms are probably likely from the calcification having grown big enough to start pressing on surrounding nerves. I started having pain about eight years ago and it worsened over time. We just discovered that my daughter has the beginnings of calcifications on both sides. She is 14. That tells me that mine could have been growing for three decades and did not start hurting until the last decade, wherein it progressively worsened. I would say your new symptoms are indicating that it is likely pressing on many things in your neck that it should not be interfering with.


#18

Thank you Pam, I just wish I could convince a doctor that I’m not crazy. From the sounds of most people’s experiences, with ES, it sounds like I have a long road ahead of me.


#19

Having symptoms come and go for no apparent reason does seem to be common- I had quite a bit of pain before I was diagnosed, and the doctor I saw then was quite ignorant about it all, and told me that surgery is rarely done, so I left it and things did settle down for quite a while… I found out lots more from this site and when my symptoms suddenly worsened (including starting to get vascular symptoms which I’d not had before) I was able to get referred to a doctor I’d read about on here.
It could be that the calcification is continuing, maybe thickening the styloid process and it’s giving you worse symptoms, who knows, but there is research to show that with ageing (apologies, I don’t know if this might be a factor or not!!) connective tissue loses it’s elasticity so structures can shift slightly, which could be enough to bring yours into contact with a nerve. It’s a really tight space, and not meant to be filled up with thickened, calcified ligaments!
I started having disc problems in my neck, and that’s the only thing I can think of which might have caused enough of a shift to compress the jugular veins. So keep trying and don’t give up; there are doctors out there who do understand ES and do treat it!


#20

Sorry to hear that your daughter is starting to have problems- is it causing symptoms and might you consider surgery for her?