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Eagle Syndrome - Online Support Group

Advice/suggestions before my 2nd opinion appointment

I was recently diagnosed by my ENT - with a confirmation from a CT scan w/contrast. Here is a summary of the final report from the radiologist … “the left styloid process is elongated with calcification of the left styloid ligament measuring up to 3.3 cm in length.” The elongated left styloid process flattens the lateral margin of the left internal jugular vein but does not exert any mass effect on the carotid artery.”

I am currently waiting on a second opinion appointment with Dr. Rui Fernandes (Oral & Maxillofacial Surgery) in Jacksonville, FL. He is on the Living with Eagle Syndrome doctor list for Florida but there is no accompanying comments.

I am 65 yrs. old. My tonsils were removed at age 31 … which is the reason my ENT gave for developing ES but after more research I realize that it is only one of several possible causes. I also have a fused disc at C6-7 (2002) with several degenerated discs accompanied by arthritis in the spine. I was diagnosed with hypothyroidism in 2006. I am treated regularly for pain that radiates all around the left side of my neck, shoulder and across my collar bone. I assumed all this was from my cervical spine issues.

Several years ago I began to experience a facial pain that made it very uncomfortable to wear my glasses. After several doctors and various scans I walked away with a possible diagnosis of trigeminal neuralgia. I wasn’t convinced, but followed the neurologists advice anyway and began the prescription of Gabapentin - which was supposed to be titrating up to 600 mg 4x’s per day! I never actually made it to that high of a dose, even at my peak discomfort level and I’m pleased to say that these symptoms have gradually subsided to a manageable discomfort level with no Gabapentin at all.

Early this January, I developed a sore throat and kept waking up with a feeling of my throat being extremely dry on the left side. There was a “band” of red on that side and I assumed that I had a strep infection and went to my ENT. He said, no strep and performed a nasal endoscopy to look for possible causes — fortunately everything was okay. I followed his directions to gargle with salt water, use a saline rinse, as well as some prescriptions he had given me in the past for sinus issues. None of this gave me any relief. About two weeks later, I had a scheduled visit to my GP and mentioned that I am still having sore throat symptoms and asked if would do a strep test, just to ease my mind. It was negative. The GP then suggested that I had ulcers (canker sores) in my throat. So, back to my ENT. This time he decided to palpate the left side (ouch!) and said he believed it to be ES. He had seen one other case early in his career and he had performed successful inter-oral surgery on his patient. He then ordered the CT scan to confirm.

It feels like something is in my throat on the left side, my voice tires easily if I talk too long and when I reach back to apply lidocaine gel, I can easily feel a sharp projection under the skin on the left side just beyond the hard palette. I am aware of it all the time, but fortunately the pain has subsided somewhat since the month of January. I seem to have good days and bad days.

I am currently managing this with Hydrocodone w/APAP (that I have used off and on for several years for spinal issues), Lidocaine Gel, and loads of throat lozenges to combat the feeling of dryness.

This site will be a huge help in developing a list of questions and concerns to review with Dr. Fernandes when I see him. Any suggestions or comments would be most welcome.

Hi suzb80 ~

Here is an excerpt from a post I made in 2019:

"The Newbies Guide & General Discussion sections have a number of posts about questions to ask your doctor. You can search the forum using the magnifying glass icon above. Use “Questions to ask” as your search phrase.

Here is a basic list:

How many ES surgeries has he done?
Intraoral or external surgery? (We prefer external as we feel it’s a bit safer but both types of surgery have proven to be successful)
Outpatient or inpatient?
How much styloid is removed? (removal at skull base is best)
Is the tip of any styloid left behind smoothed off?
Is the stylohyoid ligament also removed? (removel at the lesser horn of the hyoid bone is best)

Do not walk in w/ a huge list of symptoms & give them all to the doctor. Keep it to basic, obvious ES symptoms like facial pain, sore throat, ear pain, neck pain, something poking in your throat, clicking when swallowing, dizzyness…these are common symptoms of ES. You may not have all of them, & you likely have some I haven’t mentioned. More obscure symptoms will be dismissed as being caused by something else, but you will likely see them resolve once you have your styloids/stylohyoid ligaments removed."

Good for you for getting a second opinion! Here is a link to a thread where Dr. Fernandes is mentioned:

I’m glad you’ve been able to discontinue the gabapentin & that you have other protocols in place that help receive pain & other symptoms. Having your styloid removed should make a big difference for you. You may find that some or all of the pain you thought was related to your cervical spine & disc issues subsides. We hope this is the case anyway!

Please let us know how your visit w/ Dr. Fernandes goes & what you decide regarding surgery.

:blush:

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Isaiah_40_31 Thank you so much for your quick and supportive reply! And the links to more information … all so very helpful.

I totally agree about keeping my list of symptoms basic and obvious. I am hoping that these basic symptoms along with referral from my ENT, as well as the CT scan will be evidence enough of a problem.

The more I read on this site, the more I am convinced that other symptoms that I did not mention in my previous post can possibly be attributed to ES. For example, the increase in anxiety and decrease in the desire for being sociable.

Dr. Fernandes is not in my network of physicians but has been recommended by others and was mentioned on this site. I will talk to him, see how it goes and keep you posted. I am currently thinking that if I am comfortable with his approach, I will wait until I can change insurance providers and schedule surgery. :crossed_fingers:

But it’s one step at a time. Right now, I am extremely grateful to think that I might be a little closer to a solution for a string of medical challenges that I have been experiencing.

Thank you! :pray:

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Hope that the appt goes well for you, I think Isaiah has covered everything! Let us know how you get on!

Thanks! I will definitely stay in touch. I’m certain to have more questions and concerns :sunflower:.

Good attitude & approach, suzb80 - one step at a time. Some days it will feel like you’re walking on a narrow ledge & others, a wide road. An irritated vagus nerve can cause increased anxiety as the vagus has control in that arena. It’s a very common symptom of ES, I think both caused by the random symptoms & irritated vagus nerve. Most ES patients have vagus nerve symptoms of one kind or another. Anxiety also will decrease the desire to be social (plus the pain/other symptoms). You’re in the right ballpark!

So glad you’re making progress in finding a solution for long standing health challenges.

:hugs:

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You’re right! Sometimes that “ledge/road” changes width in the same day! :stuck_out_tongue_winking_eye:

It feels like I’m making progress just finding this site and communicating.

Thanks!

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I also have Eagles and I read your post and noticed you use an APAP for spinal issues… is the APAP used because you have breathing problems? I’m curious because I have the same thing.

Oh I am sorry for the confusion. The “APAP” is only Acetaminophen … an analgesic like Tylenol that is always added to the prescription.

I do not have breathing problems (thankfully). :pray:

While I see all the questions I should be asking my surgeon, to be honest there has been basically zero interaction between us and my surgery is tomorrow. He basically read my CT scan, pointed out that I had abnormally long styloid process on both sides and then scheduled me for surgery saying he would be removing only the left side. Any information I have collected was on my own and through the internet. Won’t asking him questions imply that I think he isn’t competent? He has a very gruff demeanor.

Hey everyone, I had my surgery in April 2019. Almost a year now. I was in so much pain when I learned it might be something they can fix I was ecstatic. My surgery went well. He did not remove the whole styloid. Now I’m having some mild symptoms on the surgery side. I am so worried it’s growing back. My question is. Does this happen? Do surgeries need to be redone?
Thank you, Margret

The styloids can grow back if they’re not removed right back to the skull base, but it is very rare, & especially to grow back that quickly. We’ve had a few members who have had to have surgery again, but it’s been only a handful in the 5 years I’ve been on here. If you’re really concerned about this you could have a CT to see, but it’s more likely that either it’s scar tissue, or possibly that you’ve done something to aggravate the area. Have you done anything different? There are treatments for scar tissue if it’s that, you could try massaging with oil, or consider cold laser therapy- you can search for that in the past discussions. It could just be a temporary hiccup- nerves can still heal a year after surgery- I do notice mini flare ups if I’m getting a virus or something for example.
Hope that it does turn out to be a minor blip!

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Best of luck with your surgery tomorrow! :bouquet:

Some physicians can certainly give that gruff impression. But, I don’t think asking questions in order to be more informed about what to expect during and after the procedure can be looked at as questioning their abilities or competence … but rather a patient trying to be informed and prepared. I do try to keep my questions concise and to the point.
Also, I have often included my spouse on any Dr. visit that I am particularly nervous about. It helps ground me and I feel like two people listening and asking questions is better than one.

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Hi Margret,

Besides what Jules said, if you have elongation &/or stylohyoid ligament calcification on the other side, which was asymptomatic at the time of your first surgery, that can cause symptoms to flare up & cause “cross over” pain on the side where the styloid was already removed. We have several members who’ve had that experience & once the remaining styloid was removed, those symptoms disappeared.

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Thank you. You both made me feel better. :heart_eyes:

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Happy “cake day” Margret! That means you’re celebrating your 1 year anniversary as a forum member today. :blush:

Thanks :blush: where does time go :joy:

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With all the hubbub going on now - I haven’t been on the site since last week … I hope your surgery went well. :sunflower:

This post has been so helpful to me .

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