Just diagnosed yesterday - need advice & ideas

General
1

Hello. So excited to get input.

I've had the feeling of an ear ache, sore throat, neck ache, don't turn my head to the right or I choke, dizzy, tired and sore jar/teeth for years. I was told by my PCM that it all had to do with the thyroid condition - Hashimoto's - but I always knew it was more. It was confirmed with a CT scan (they were looking for something on the thyroid - by the grace of God this was uncovered). My military doctor is not skilled with Eagle Syndrome - he said he's never seen a case like this before "but the anatomy is the same regardless". He confirmed that calcified stylohyoid ligament is actually connected at the hyoid. Basically, he said that he could not guarantee that I would end up with all of the issues going away, and he also said that the nerve to my mouth would likely be damaged. I am still in my 40s and don't wish to have an ear to jaw cut and the nerve to my lip effected! I'm scared and not sure that a general ENT guy is the right path, but don't know where to find a "specialist" yet. I found this on a simple web search, so I'm prayerful that someone here is familiar with the SoCal area and can help me find a great route to get some help.

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Concensus on this site is use someone with experience. There is a excel spreadsheet of doctors with experience on this site. I don't think I have read about anyone who has had "nerve problems with their lip"...??? Get the facts from someone with experience.

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I too am looking for a doctor with experience, but they are hard to come by. The consensus I have seen on here is start with an ENT doc with experience in Eagles and get a referral to a head and neck surgeon. That is what I am looking at right now. I know there are some CA docs on the spreadsheet. Just search this site for doctor recommendations and you should find it.

4

I had an external approach surgery, and my scar is maybe 2 inches on my neck. My doc never told me how large it was going to be, so i definitely woke up surprised and upset on how large it was. I cried. But a year later and with the help of mederma and lotion it is much smaller, no one has ever asked about it in passing, and if I had to describe what it looked like now it would be comparable to a cat scratch scar. My doc had never done the surgery, and the only time he had seen in was his residency, and the guy was over 60. I have not had any paralysis due to surgery either. Unfortunately for me some of the pain i was experiencing was from nerve damage from Meningitis not from ES like they believed.
Good luck to you, I am sure that things will be just fine.

5

Right Shaw he seemed to find a good Dr in La I’m up in Oc but think my Ent doesn’t preform the surgery any more but heard a William Armstrong at uci is a great Ent

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Check the spreadsheet for Dr. Samji, everyone on this site seems to share the opinion that he is one of the best and he is in CA. I’d try to see him if possible. Hope you get some relief!

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I believe that an ENT IS the right person. Last month I had the right side operated on. And the second I had done yesterday. As soon as I woke up from the anesthesia I could tell that so much of that pressure and pain was gone. In my journey I went to several ENT, Neurologists, and Oral Surgeons. The Oral Surgeons wanted to give me oral appliances and/or steroid shots. I tried the oral appliances and they didn't help (actually made things worse for me.) In my opinion the best thing is surgery to remove the stuff that is causing pain and causing your body to attack itself. For me the elongated styloid process was actually in the way of my jaw also. It is a fairly simple surgery. Mine was done intraoral, they go in at the point of your tonsils. (less than a 30 minute surgery) And like I said, the pressure/pain relief was immediate when I woke up from anesthesia. I am sore at the point of surgery. But so much of that pain and pressure is still gone. I believe there are several docs listed on this site in your area. That is how I found the ENT who was actually willing to remove mine. I had a 2 1/2 hour drive to get t him, but definitely worth it.

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I had three surgeries on my neck. I got my hyoid bone done along with styloid last time. I had "numbness" on left jaw/ear for about 2.5 years. It's worth surgery but you'll want help from someone experienced so they have done it before!

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putting my 2 cents in--look for a surgeon. Not an ENT-unless they have a surgical experience also. My ENT's advice....he wouldn't touch it but sent me to surgeons. Even surgeons don't like ES for some reason-my surgeries that were done properly were very straight forward.

The specialty of the surgeons that did the best for me were: skull base surgeon, head and neck surgeon, micro-vascular surgeon (in case blood vessels (like carotid artery) had been impacted), reconstructive surgeon.

Experience is a double edged sword--the doctor that removed my right styloid process in 1990 which ended all my symptoms, removed my left hyoid bone by mistake in 2002. Leaving the 6-7cm styloid process in place-to be removed in 2 additional operations later. oops I guess.

In 1990 I was told external removal gave the best angle to get the most of it out, less chance of infection, but I would have a scar. Or if I was vane he would do it internally. This is Beverly Hills after all. I went with "get the most and give me a scar"-really didn't care if it meant the best chance to end the pain--and its a great conversation piece. But its been 20+ years and its not noticeable. He did a great job of hiding the incision in the crease of my jaw/neck.

Familiarity with ES is not common it seems, so finding someone with a surgical background and ES knowledge is the best.

My external surgical scars are only 1 to 1.5 inches long. Even the internal one from September 2013 (finally successful!) was small but much more painful than the 3 external surgeries I've had. No nerve problems or numbness even with the failed ones.

Looking at the styloid process, its right there at the base of the skull and very easy to get at from the outside and cut it back to the length it's supposed to be. then look at the remaining symptoms.

ya know, these guys cut people open daily to remove stuff. tonsils, glands, lymph nodes, even a nose job is a surgical procedure. ES is not that weird but we are treated like aliens that don't have the same parts as other humans.

I have 2 doctors to recommend in LA and 2 to run like hell from. I'll send a friend request and we can type at each other and use names.

There are no guarantees but removing something that is 6cm long that is supposed to be about 1cm long its pretty obvious what to do. At least to us.

Shaw

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Look for doctors that use the term "removal" not "shorten". It is like removing half a piece of wood that has punctured your hand and expecting it to not cause pain after the half surgery. Remove it all.

I also found that, if the styloid is palpable, the doctor that can reach in and just touch the tip because they know where it is, is a good start. I've found drs. with that skill and also the type that don't have a clue and digs all around and can't feel it too.

These became my initial litmus test as to whether I was going to return to a doctor--their demonstratable rudimentary knowledge.

good luck in the dr hunt.

shaw

11

Hello,

I have been diagnosied with eagle syndrome on both sides, atypical facial pain and TMJ. I have had surgery on my left side but an leaving my right side alone. If I had to do this all over again I would first do alternative treatments working on my tight muscles in my face and neck. I have found that not only are my muscles extremely tight, my nervous system is so inflammed it is still causing me problems. I had several months of treatment at the myomassageclinic.com and you can read about their approach. I believe cutting should be a last resort for anyone and when I had my surgery I had no idea that alternative treatments might work for me.

Good luck in your journey

Ann

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Hi’ I did use a Base Skull surgeon in Atlanta Ga @ Emory teaching hospital" His name is Dr.Charlrs Moore! He is a excellent and very intelligent Doctor. Also was very professional and has a wonderful bedside manner. I did the intraoral approach on the left styloid! Now I’m making a appt to go back for the right side. 8 yrs later! Im having jaw ear and sore throat and head and neck pain! Before I was having choking and swallowing problems. I wish you luck ! And I highly recommend him! Coming from a family of medical professionals!

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Hello,

i am from the nederlands. i am now 36 years old.

2 years ago i hurt that i had the eagle syndrome. I had the same feelings of pain as you.

I had the operation and they cut the eagle bone away.

After 4 weeks i was totely pain free and now living without any pain anymore.

So go do the surgery and find a doctor ho knows how to do se sergery Eagle

good luck greetings from Martin

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I do suggest having surgery one side at a time. I really tried to convince my doc to do both sides at once, but I am now glad that we did one at a time, because my second surgery hurt a lot (I think because there was a lot that he had to dig out). But even though I hurt a lot right now, I can also feel the relief of the constant pain. I can feel the void where it used to be. It is Amazing!

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My son has all the same symptoms as you for the most part (ear pain, throat pain and sometimes neck pain). And today we told to see a psychiatrist....again. These doctors drive me to drink and I am not that kind of person. Always stick to your guns. Never let someone tell you your pain is in your head. Steaming mad right now.

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You need to look for a Dr. that knows about Eagke syndrome. If I were you, talk with your dentist. They actually are the ones who diagnosed me, then said to go to ENT. It took me going throu 8 ENT's to find one that knew about it and he is AMAZING!!!! He has done all three surgeries on me.

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Dentists learn about Eagle Syndrome and can be more helpful the our pcp's. unless were on our death bed were fine... but with dentists and ENT that's the way to go



ang said:

You need to look for a Dr. that knows about Eagke syndrome. If I were you, talk with your dentist. They actually are the ones who diagnosed me, then said to go to ENT. It took me going throu 8 ENT's to find one that knew about it and he is AMAZING!!!! He has done all three surgeries on me.

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I was with a doctor who is very well versed in Eagles. But again, he has never seen a child with this before...so it just doesn't make sense - to him...sometimes, we need to write a new case and make history. I intend to be that someone. I want to help others after I get help for my son. Just because a doctor hasn't seen it before, doesn't mean it can't exist.

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ENT or neurologist is the route to go. ENT is where you will most likely go and they are most knowledable with how to properly care for your pain and condition. You need an MRI, not a CT. MRI will be more informative not a CT. If you have additional questions, I had all your symptoms and couldn't turn my head, surgery was the BEST decision!

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Look up Eagles on the CDC website. It can be something that happened when he was developing, genetics. Yes, this 9 year old in PT had calcified muscles in her whole neck they had to go in and remove it all. So yes it does happen to kids. usually when puberty is happening are when symptoms occur. Usually it's the embryo sac when ES happens but it can be other things like TOS etc

Ear Mom said:

I was with a doctor who is very well versed in Eagles. But again, he has never seen a child with this before...so it just doesn't make sense - to him...sometimes, we need to write a new case and make history. I intend to be that someone. I want to help others after I get help for my son. Just because a doctor hasn't seen it before, doesn't mean it can't exist.