Good Morning, Thanks for letting me join this group. Over the past several years I have been dealing with several of the symptoms associated with Eagle Syndrome. Neck pain, ear pain, dizziness, sensation of something stuck in my throat, sharp pains when I yawn really big, dysphagia and the sensation of numbness and tingling in my face like Bell’s Palsy.
Over the past 3 years I have seen a number of doctors to include neurology, ENT, Ortho and endured multiple MRIs, CTs and exams. Heck, I even underwent surgery for osteophyte resections to assist with my swallowing and a septoplasty to “open up my sinuses” so that my ears would clear. Still no relief of the symptoms. I am still seeing a primary care and neurologist every three months so that they can track my symptoms.
So, a few a months ago, I was having another CT because now they are convinced that I must have a pinched nerve somewhere causing issues. This radiologist noted that I had elongated styloids measuring 4.7 and 5 CM. A neurosurgeon said that my neck looked fine except for some bulging disc that could be causing some of my symptoms but that they could be treated with medication until they became bad enough to need surgery.
I got the CT report and started reading. I learned about eagle syndrome and on the last two appointments, one with internal medicine and one with a neurologist I mentioned the condition to both of them. Their immediate response in both cases was, “Eagle? Like the bird?” Then they both said that is not a real condition, until they pulled up the diagnosis code and saw it was listed. The neurologist actually pulled it up on line and said it sounded like what I might have and has referred me to a “sub-skull” specialist. The internal medicine doctor said, “I will diagnose you with that if you want me to.”.
Do you guys find that most doctors are totally ignorant of this condition and down right flippant when you point it out to them?
Hi & welcome to the site!
I’m sorry that it took you so long to get diagnosed, it’s beyond frustrating when it could’ve been diagnosed much earlier…Sadly there’s still much ignorance & skepticism among doctors about ES, despite many research papers being published on diagnosis & treatment! Many of our members have had the same experience as you, & have found out about ES themselves & pushed to get a diagnosis like you have.
I was lucky and a doctor spotted the styloids on a panoramic x-ray I had in a hospital dental clinic, but the consultant she called in to have a look was more ignorant- he said that the styloids couldn’t compress blood vessels but I had bilateral jugular vein compression…
What are your next steps, are they going to refer you to a doctor with experience?
Thanks for the message. It is comforting, although frustrating, to know that I am not unique.
Next step, the neurologist has referred me to an ENT that he says is the smartest ENT he knows, a literal “walking brain”. I actually contacted that office this morning to schedule an appointment and was given one this week. When they asked what I was coming in for, I told them ES, expecting the usual response. However; this was different. The young lady on the other end of the phone said okay. I confess I was shocked and asked if she knew what that was. She said yes, the the doctor treats patients with ES and has at least one other active patient right now.
Hopefully we’ll find out what the world holds for the future this week.
@tjrusure - I’m glad you found our forum & that you’ve finally been believed. Your styloids are significantly long! I would enter your appointment w/ “the smartest ENT/a walking brain” that your neurologist knows w/ a bit of skepticism. Many brilliant doctors know about ES but don’t have a clue about proper treatment for it. @Jules has written many good & extensive posts which are in our Newbies Guide to help new members inform themselves prior to making a commitment for surgery w/ a doctor who may not do the best job due to lack of experience or lack of understanding of best surgical practices for ES. Here is a link to one of her posts: ES Information- Treatment: Surgery
There are a number of doctors on our Doctors List in your state (maybe even the ENT you’ll see later this week), however, we recommend getting a second opinion. Several of the doctors on our Doctors List do telehealth initial consults so you could “see” someone who is outside of your state if you chose to for a second opinion.
Please come back to let us know how your appointment goes.
Looking forward to hearing how it goes, a good idea to ask if they know about ES before the appointment, we’ve had quite a few members turn up at different places and the doctor hasn’t a clue… it goes well!
I visited with the Doctor for quite some time. It was refreshing. He knew all about the condition and had actually performed surgery to correct it in the past but now he refers that out. He stated that I had a “significant” condition and that he would not want to do my surgery even if he still did the procedure. He will be referring me out. While we’re waiting for what will be happening next, he suggest that I avoid repetitive head movements to mitigate potential aggravation of elongated styloid process. Apparently my problem is in a difficult area. He said my styloid is too big for the area it is in and will be difficult to remove. So I guess now the hunt is on for someone willing to do the procedure. BTW, this guy does give the impression of being a 10 ton brain, but thankfully he has a great personality.
That’s great news, @tjrusure! Thank you for the follow-up post. I’ll be interested to see to whom he refers you. There are a few doctors in your state who do ES surgeries but if yours may be a more complicated case, you’ll probably want to see Dr. Hackman in NC, Dr. Cognetti in PA, or Dr. Old in OH as these doctors have lots of ES surgical experience.
Alright, so update time on my quest for a solution to the difficulty I have with ES and the search for a doctor who actually sees people and does the procedure. I have the following updates for people searching.
From Florida:
The UF ENT doctors require a referral from a UF doctor before they will see you.
Dr Raam Lakhani’s office said that they do not do the procedure anymore.
Dr. Morgan’s office does not accept my insurance and request a $500.00 consult fee.
U of M told me they do not do the procedure.
Mayo Clinic, no one responses to calls or inquiries.
Dr. Widicks office, I left a message and have not heard back.
Advent Health does not accept my insurance.
Just an FYI for the veterans out there. I would have thought that with the shear number of veterans that go through a VA Medical Center, that someone would have heard of ES. That does not seem to be the case. The VA is not sure if it is ENT of Ortho that should be involved in case.
From Georgia:
Dr. Arturo Solares does not do the procedure. however; Dr. John Delgaudio, MD (who looks amazing on paper) does do the procedure. Speaking to his office, he sees about 10 cases a month and does the surgery. I have scheduled with him for later this month. His office has my records and dealing with his nurse is a pleasure.
•Dr. Michael Vick at Wellstar is no longer do the surgery. However, Dr. Nelson May in his office is doing the procedure now and according to the staff very familiar with the procedure. I have an appointment with him the end of the month as well.
I figure out of two in Georgia, I might be able to get some resolution. Everyone else my doctors have referred me to are not doing the procedure. I was even referred to a neurologist who was suppose to be very good but his office informed me that he does not see ES patients any longer.
@tjrusure - What a great example of being proactive your post demonstrates! I will update our Doctors List. I’m sorry you had to make so many calls to find a couple of doctors who are willing to see you & able to help with your ES problem.
Please let us know how your appointments w/ Dr. May & Dr. Delgaudio go. If either of them turns you away because you don’t have a particular symptom they think people who have ES MUST have, then that is not the right doctor for you. Symptoms vary by patient & though some symptoms are more common than others, there is no particular symptom that can define whether a person has ES or not. It’s the big picture of elongated styloids and the collective symptoms that should define the diagnosis.
That is what the ENT I saw told me as well. I had symptoms that he recognized and others that he did not, but he did say it was different for just about everyone. I will be glad whenever I get it fixed. To be honest, just laying down for a good nights sleep would be nice. If that if all I get I would consider that a victory.
@tjrusure - I hope you’re able to have your ES taken care of soon. It is a huge blessing to be able to sleep through the night, for sure!!
Try icing your neck, even in bed at night, for 15 min. on & 45 min. off. For some people sleeping with head elevation is also helpful. Some of our members have gotten an Rx for nerve pain medication such as Gabapentin, Amitriptyline, or Carbamazepine which has been helpful but can take several weeks to help reduce symptoms.
Was the neurologist you were referred to Dr. Rishi Gupta, by chance?
When I read posts like this I always wonder why Drs stop doing the surgery. HEPWORTH has a gold mine of patients needing help. If your a skilled surgeon that can handle it you could make a lot of money.
I think it comes down to not enough upside to justify the downside financial if something happens. It seems a lot of these people are affiliated with larger institutions that might have a risk management department that simply refuses to allow them to perform the procedure.
That factor is why i want the best for my particular situation. Just havent decided yet. Hepworth is doing two people here soon. I am going to see what they have to say after it is over. A lot of risk involved for older patients. The last surgery i had i interviewed three surgeons and the three hospitals . The clincher was the anesthesia department who took the risk of malignant hyperthermia seriously and even wanted to change time of my surgery to first of the day and they had the head guy do it. And they made sure i stayed overnight .
He even said he would show me the machine with all the precautions right before they wheeled me out. Of course he knew that was BS to ease my mind. I was out from the spinal block in seconds before I got to OR.
@JugularEagle - I’m 68. Had my first two ES surgeries at 58. I’m looking at potentially 3 more surgeries. Dr. Hepworth & I may be on a first name basis by then.
My greatest concern is the mental decline I suffer for several months after having anesthesia during surgery. It’s been documented that anesthesia is hard on the brain, & I have certainly noted that in my case. Maybe it’s because I’ve had 2 TBIs.
Dr. Hepworth honors patient requests for an overnight in the hospital post op especially if there is just cause as you have. I don’t know how generous other doctors are in that regard.
This is good to hear. I had the TIVA protocol that is characterized as using the Michael Jackson drug so i didnt have the side effects. I think it went in through my hand. I also gargled with something before surgery. I think licorice due to some study. When i woke up i immediately started brain exercises like alphabet and counting backwards out loud. Then i cursed about how much i hurt and got in trouble.
it goes well!