Newly diagnosed in Louisiana

Hello Everyone,
I have been suffering a range of symptoms for close to 6 years now, all of which were mild and would come and go. Ten years ago I was diagnosed with Ramsay Hunt Syndrome which is basically a shingles outbreak but internally. I suffered with outbreaks several times a year but eventually they stopped. The reason I mention this is because I assumed the symptoms I continued to have were side effects from the Ramsey Hunt. I have has ear pain and neck pain on my right side for a very long time but recently have been experiencing dizzy spells, pressure in my head especially behind my right eye and pins and needles all on the right side of my face. I convinced myself it was all linked to my wisdom teeth and maybe infection had set in. I made an appointment with my dentist and saw him this past Monday. I told him I wanted my wisdom teeth removed because they were causing me pain. He did an oral exam and explained to me that he did not believe they were the problem but offered to do a 360 xray to take a closer look. Well he was right, the xray showed an elongated styloid on my right side. He has referred me to a local oral surgeon but explained that it is very rare and that I would probably have to be referred to a specialist. So all week I have been researching and was very happy to find this group. The only thing I’m really struggling with right now is what to do next, do I make the appointment with the oral surgeon even though its douptful he can help or do I try to see the only Doctor in my state that has experience with ES. We do not have health insurance so I really cant afford to make appointments that will go no where. Just looking to be pointed in the right direction. Thanks for listening!

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Hi jmsweeney75,

Welcome to our site! I’m so glad you found us & hope that you find the information & support you need from our members.

Eagle Syndrome is defined as 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combination of 1 & 2. The type of doctor that usually treats ES is a skull-based ENT surgeon, neurosurgeon or maxillofacial surgeon. These doctors are often cancer specialists. Understanding the type & thoroughness of a doctor’s surgical approach is important. We recommend the external (vs. intraoral) approach as access to the styloids & stylohyoid ligaments is better & the styloid can be removed back to the skull base & the stylohyoid ligaments, if calcified, can be removed as well. This provides the best long-term recovery from ES symptoms. Nerves & vascular tissues can also be better monitored & seen via the external approach.

The symptoms of ES are caused by irritation of up to 6 cranial nerves that “live” in your neck in the same area as the styloid processes & stylohyoid ligaments. Elongation of the styloid(s) &/or calcification of the stylohyoid ligaments can cause irritation to these nerves. Alone each nerve when “upset” can create painful & sometimes scary symptoms. When more than one is irritated the symptoms caused can be downright debilitating. Additionally, vascular compression of the internal carotid artery &/or jugular vein can occur which creates other miserable & concerning symptoms. Obviously, the solution for recovery is to remove the offending bones/ligaments so the nerves &/or vascular tissues can recover.

There is a series of YouTube videos called Two Minute Neuroscience . Each cranial nerve is featured in a two-minute video w/ explanation as to location, function & dysfunction of the nerve. It would be good for you to watch them. These are the nerves affected by ES: vagus, facial, glossopharyngeal, hypoglossal, trigeminal & accessory. Hopefully the information you receive will help you understand the source of some/most of your symptoms.

Dr. Daniel Nuss is the doctor for you to see in your state. He has done ES surgery for several of our members which has helped to relieve them of their symptoms to the degree that they are able to function much more normally. Though we consider surgery the only “cure” for ES there can be symptoms that linger but at a lower level which allows us to be more fully functional than prior to surgery. Some of our members have found they need to be on nerve pain meds post op. These can also be helpful prior to ES surgery to help ease symptoms, but they are not a long-term cure. There are likely other ENT cancer specialists in your state who are familiar w/ ES but Dr. Nuss is the only one whose name has been given to us by forum members.

I’m sorry that this will likely be a financially challenging issue for you & also that you’ve recently lost your job. Definitely a double whammy for you. Many doctors offer significant discounts for patients who don’t have insurance. Please ask the medical office(s) you contact about their financial policy for cash paying patients.

Personally, I’d suggest waiting & trying to see Dr Nuss if you can- but best to ring to check how available he is as I think I mentioned in the pm that he had had to take some time off. You need to see someone with experience of ES; as your dentist says it’s rare so the oral surgeon might not even have heard of it, especially if finances are tight, you don’t want to be wasting money.
If you can’t see Dr Nuss, as Isaiah has says there are other doctors who might be able to help.
Let us know if you need any more info, & how you get on.

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Hi jms,
You will likely need a CT scan without contrast of neck as most all ENT docs that handle ES patients require them. It is considered the Gold standard for ES diagnosis. Its important the order states evaluation for Eagles Syndrome otherwise radiologist will not review for it and often it gets overlooked.

I would suggest calling around to radiology places and ask for a cash price on one. I think they normally charge insurance about $1000? In my case, Regence discounted rate was $306. I would expect cash price to be somewhere in that range up to $500 for a reasonable cash price.

I assume they may still require a doctors order for the CT scan. Id save money and not go to oral surgeon. Unless you can get him to order the CT scan which may be unlikely. YOu could call in advance and ask if the oral surgeon has any experience with ES and whether he would order one. Most oral surgeons don’t venture into that realm and stick to the 3D xray for their work.
If you have a PCP that you can just call and get one ordered without paying for an office visit, that would be helpful. They may be willing to do it especially if you have a longstanding relationship and tell them you are paying cash and they don’t have to do any pre-authorization paperwork.

We do have an ES specialist on west coast (Dr. Samji) that will review your CT scan and do video appt consult for $500?

Im not sure what you personal financial situation is but depending on your family income, you should qualify for state sponsored medicaid or through your state or federal health insurance exchange.

Your in the right place and this site a wealth of knowledge on everything ES. :smiling_face_with_three_hearts:


I honestly wouldn’t waste your time on any doctor but a head neck surgeon that has ES experience. A lot of them will take a video call first appointment with the scans sent ahead of time. I would assume if you don’t have insurance you would probably want to stay close to home as not to incur anymore cost than necessary . Also check with your ES specialist hospital financial aid department. I know of several states that have reduced prices as well as completely covered bases on no insurance or financial circumstances. I went to doctors for years before I was diagnosed. I really wish I had t he money back I wasted. At least it would have fed a lot of hungry children. Best of Luck to you!


Thanks everyone for all of the information and well wishes! I find myself thankful that I don’t feel the need for immediate surgery. I have some really bad days but at this time find it manageable with rest and ibuprofen. I plan to call the Oral/Maxillofacial Surgeon my dentist I was referred to and find out if he has any experience with ES. If he does not I will go ahead and have my wisdom teeth removed as my dentist said it will give me some relief. Hopefully that provides some relief and time to decide what my next step is. Im also going to look into getting a CT scan done so that if I can get into see Dr.Nuss it will be over and done with. I was wondering if anyone knows if Botox has been used as a treatment, I have several friends using it for migrane relief with good reviews. I also plan on checking into my states medicaid program, we have never qualified before but because of Covid we lost almost half of our income this year. If that does not work out my husband said he will find out if we can take money from his IRA for medical reasons without penalty and my mother has also volunteered to help if needed. I read so many stories on hear for days, someone mentioned a pillow that might help with sleep. I don’t have trouble sleeping its waking up after sleeping with my neck in the wrong position that leads to agony. I will update as my journey continues, thanks again to you all!

There have been discussions about getting teeth removed vs possible ES pain, which you might find interesting to read… are you sure that your wisdom teeth are a problem & removing them will help? I don’t want to confuse you, but ES can cause Trigeminal Neuralgia , which can cause tooth & jaw pain. I was told by my dentist that I needed all my wisdom teeth out- I was a little suspicious (especially as he had holidays in the Seychelles, & drove a very nice sports car, lol), so mentioned it to the hygienist who thought they were fine! 20 years later I needed one out, but still have the other 3, no problems! Not saying your dentist can’t be trusted; they sound reasonable & helpful, just a little worried that if you do have them removed, if you do have any nerve pain from ES, it could flare things up even more & you could end up in more pain, as well as the expense of having the wisdom teeth removed.

Hi jmsweeney75,

I second what Jules said. There are many forum members who had teeth extracted to try to relieve pain that ended up being caused by ES. In almost every case, the tooth extraction either didn’t reduce the pain or made the pain worse. The same goes for those who were told having tonsils removed would help. Almost universally, tonsillectomy does not help reduce pain for someone w/ ES & can exacerbate it.

You might want to err on the side of caution & get the CT scan & have the consult w/ Dr. Nuss if the Oral/Maxillofacial surgeon can’t help you BEFORE you get your wisdom teeth removed.

The only injection we know of that has been helpful w/ ES pain is a mixture of lidocaine & cortisone injected into the tonsilar area using ultrasound guidance. Even that is unreliable & helps some people for a few hours to a few weeks. It also has limits as it can’t be done more than 3 or 4 times. I fear that Botox might make your situation worse since it paralyzes the muscles in the area of the injection. That wouldn’t be ideal in your case.

As far as the pillows go, we recommend a wedge pillow ($25 from Bed, Bath & Beyond…Amazon also has a selection) & a V or U shaped pillow. These are essential post op to help prevent swelling but some members have found them helpful pre-op as well. Sleeping w/ your head elevated can help reduce pressure on the nerves & the U or V shaped pillow can help keep your head in a more neutral position at night which will help prevent the morning pain you experience.

I’m glad you have some options for financial aid. That must give you some relief from worry about moving forward.

I do suggest focusing on obtaining the CT scan to confirm ES diagnosis. I like the suggestion of going to financial aid dept at hospital. They often write off costs depending on your income. I would get an application first and see what they require. If you have any savings and slightly above poverty level, they may just take payments and not lower bill. 100% write is usually below $24, 500K for a single person.
I see Biden administration is now opening up the ACA insurance options for 3 months and the cutoff for medicaid for a single person is about $17,500. At that point and above you can get a decent health policy on ACA and get maximum subsidy.
I have gotten botox, nerve blocks and steroids. They help tamp down the symptoms for a period of time. Steroids helped me the most. Botox has been helpful for headaches and in my temples and jaw but I also have TMJ. As an FYI: Botox is very expensive. You can plan on about $1200 a pop.
I have had neck problems for years and have found the wedge pillow combined with the U-shaped pillow to have been very helpful. It has helped stabilize me neck while I sleep and waking up in pain from being in wring positions have been way less.


Hi. I’m in Mississippi. I’m not sure if you have had any luck recently. I tried to see Dr. Daniel Nuss and they referred me to another Dr. at our lady of the lake head and neck center in Baton Rouge. His name is Dr. Stephen Hernandez. I’m not sure how many of these surgeries he has done. He said he only does maybe 2 to 3 per year.

I don’t recognize his name & doing a quick search of his name only brings up your two recent posts, so it’s most likely he hasn’t done surgery for any of our members. The fact that he does ES surgery, even if only 2-3/year is a good sign that he has experience. If he’s been in practice a long time, those 2-3/per year will have added up.

My recommendation is that you get an appointment with him & ask the important questions we suggest about surgery. Once you have your discussion with him, you’ll have a better feel for how experienced he is.

Questions to ask:

Intraoral or external approach?
How much styloid is removed (back to the skull base if possible, is the "right answer; “some” or “I just shorten it” need more detail to be added on the doctor’s part i.e. how much is removed)
Is the tip of any remaining styloid smoothed off?
Are calcified stylohyoid ligaments removed as well?
Is surgery outpatient or inpatient w/ an overnight hospital stay?
What pain medication is prescribed & how is post op swelling handled i.e. drain tube, steroids, neck bra or ?
What is expected recovery time?

Hopefully someone else will add to the list if I’ve forgotten something. It would be great to add a new doctor to our list. I hope he works out for you!

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Hi. I am supposed to be having surgery on the 19th of this month with him. He is wanting to do the Intraoral approach, which I am a little opposed to. I mentioned it at my last appointment, but I had not decided at that point I wanted to do the surgery. He told me he would do it for me, and I called him back a week later and said I wanted to proceed. He has only called me back one time, and still was talking about the Intraoral approach. I was unable to concentrate as I had children yelling while I was talking to him. I have been trying to get him back on the phone since then. The nurse that has been calling me seems as though she is new. They had me get a ct scan with contrast in my hometown. When she called to tell me it was scheduled, I asked about restrictions(eating, drinking beforehand, etc.) she told me that they didn’t mention any restrictions. So, the day of, I called the place to ask and they told me absolutely no eating or drinking beforehand. I would figure with her being a nurse, if she didn’t know, that she would ask them. I have been asking her to have him call me and mentioned to her multiple times that I do not want to do the Intraoral approach because of what I have read. I know there is less access, more risk of infection, more risk of issues with the carotid, etc. I also have a cavity at the moment which I tried to get taken care of before surgery, but I worry that could cause issues as well. My last Dr. wanted to do the external approach and the way he explained it made me comfortable. So I’m hoping Dr. Hernandez has not only just done the Intraoral approach and that is what he is comfortable with. I’m hoping I can get him to do the external approach, but with only 4 days before my surgery, I am unsure. Especially since I’m assuming they probably already submitted to insurance for Intraoral, and I’m not sure but there are probably different codes and cost associate with each one.

I was just trying to see if anyone on here had ever seen him and had surgery with him because I am nervous. I have already put in to my job to be off of work, and this would be the second time within a year that I am supposed to have surgery. I am hoping for a positive outcome.

Sorry for so many responses. He wants to keep me overnight since I am an out of state patient.

I think you should follow your gut. You don’t want to force him to perform a surgery in a way he isn’t comfortable with but you also shouldn’t settle if you have reservations. I just had surgery and it’s not a walk in the park so please stick to your guns and do what you feel is best for you.


Thank you! I agree. I am just wishful thinking that he has done both ways and is understanding about me wanting to do it that way. I’m going to call on Monday to see if I can get him on the phone and voice my concerns.

Most docs usually have a preference of doing one or the other surgery approaches. This doc may not doing external. If that is the case, you may have chosen the wrong doctor for your preference. Given you are traveling and already asked off for work, doesn’t leave you much time to pull the plug on this.
It doesn’t matter that they put in for prior-authorization, so what. If your not comfortable with internal surgery approach, don’t do it. Sounds like the nurse isnt listening and blowing off your concerns. Who knows if she/he is passing on the information to the doctor

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It is a tricky one- lots of members have had successful surgery intra-orally, but I understand your reservations. If he’s a head & neck surgeon he should have experience working in the area of the styloids, so that he only does a few a year needn’t necessarily be a problem…so frustrating that you can get answers from them at such short notice! Let us know how you get on tomorrow.

I have nothing to add except that I’ll pray for you to get the answers & reassurance you need about this surgery to help you make the right decision so you know whether to cancel or keep the appointment. :pray:t3:

I got my consult appointment with Dr. Hackman for June 29. I am excited.