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Eagle Syndrome - Online Support Group

New here and terrified!

Thank you for accepting me to this site. I have recently been diagnosed with ES and I am waiting on an appointment with a surgeon at UNC Hospital here in North Carolina. His name is Dr. Samip Patel and according to my ENT referral doctor, he has done ES surgeries in the past. I am beyond terrified. I am 50 years old and have always been in great health. Lately, I feel like I’m losing my mind with worry and anxiety. I feel like I have a nail stuck in my throat however, the pain does seem to subside a little when I can relax. I am so frightened of what the future holds for me. I have never taken any kind of pain medication other that Tylenol and Motrin, so I am scared to taking medications too.
I already had a CT scan done and the radiologist did not say anything about ES on the report. However, my ENT found ES when he looked at the images. To say I am terrified is an understatement. I am seeing a psychiatrist for the first time in my life tomorrow. I can’t sleep or even think about anything but this! The advice here is wonderful and I am so glad I found this site. Anyone else experience this level of anxiety?

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I’m so sorry you’re going through this. I can definitely relate to your anxiety level, however my anxiety was worse when I did not have a clue what was going on.

About three weeks ago I got a potential ES diagnosis (going Thursday to my ENT to confirm) after months of pain, feeling like I have something stuck in my throat, ear pain, arm weakness, shoulder pain and so on. For a while doctors thought it was my tonsil, then it was my salivary gland and then after CT scan, eagle syndrome was brought up.

I am scared of the surgery, but more scared of living with this pain for the rest of my life. I have been on tramadol (prescription pain pill) for over a month now. Taking tons of ibuprofen everyday but not sure it even helps. I have tried heat and ice but I think heat helps more.

There is a list of doctors who specialize in this condition on this site. You may want to check that out and try to get a second opinion if the surgeon you are seeing isn’t listed there. There are also a lot of posts about the surgery that have put me at ease. My doctor said it would be “like a root canal” except I wouldn’t be awake, but that I would be able to go home that same day. I somehow doubt that but he told me recovery would not be that bad. My doctor does the surgery through the neck, not through the throat like some other surgeons. I hope you can get some answers and the surgeon can ease your anxiety even more!

Thank you so much, blossom. I just received a call from the surgeon’s office who specializes in this as well as cancer surgeries of the neck. I will be seeing him on this Friday morning at 8:00am. My ENT does not do these types of surgeries so that is why he referred me to Dr. Samip Patel. I asked if Dr. Patel has done these surgeries before and they assured me that he has. I pray he can help me. I feel better knowing that at least I have an appointment with a surgeon now. I will let you know how it goes.

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Hi!
It can be a difficult journey, & a hard diagnosis to deal with as there can be misinformation out there, but is treatable, so I hope that reassures you a bit. It was good that your ENT picked up that the styloids were elongated on the CT scan; many doctors and radiologists are unaware of ES or skeptical about it, so it’s not commented on.
The styloid processes can also irritate the vagus nerve, which can cause anxiety, so that may be why you’re feeling like this if it’s unusual for you. If you search the site for anxiety & the vagus nerve, you’ll find several discussions where it’s mentioned, here’s one which might be helpful:


Dr Patel isn’t on the list of doctors that we know are familiar with ES, but that’s not to say he’s not a good surgeon, but unfortunately we can’t give you any info on him. Here’s a link to our list if you do want another opinion:

We suggest that when you see Dr Patel, you ask him whether he does intra-oral surgery or external surgery (External is felt to be better as the doctor can see more of the styloid to see & therefore remove more, plus there’s less risk of infection, although members have had successful surgery with intra-oral), ask how much of the styloid process they remove- as far back to the skull base is best, & anything left should be smoothed off. Also ask if your stylo-hyoid ligaments are calcified too, & if so if they’ll be removed.
Hope this helps!

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blossom it’s good that your doctor does external surgery, but I think underestimating recovery a bit! Most doctors do…although it does vary quite a bit depending on different doctors’ techniques. There’s lots of post-op recovery stories to read through on here if you do want to, & advice in the Newbies Guide Section, although it sounds as if you’ve been doing lots of reading up :+1:
Have you got a date yet?

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Jules, I will be sure to ask those questions you suggested! I really appreciate your advice and opinions. I have read many of the posts on here about the surgery, the recovery and what to expect. My ENT told me that Dr. Samip Patel does the surgery on the outside. I will be sure I ask though just to verify. My vagus nerve may play a role in the anxiety I feel…I also have the feeling of something stuck in the left side of my throat and my tongue and throat burns all the time. My ears ring and I have stomach issues (acid reflux) only since being diagnosed with ES. I know its all connected somehow. My ENT doctor said the my styloid is “quite impressive.” I want it gone!! ASAP!! This Friday is my first appointment with the surgeon. I am hoping we can setup a surgery date. How many appointments does it usually take with the surgeon before a date is set? I have already had a CT and I am getting a COVID test tomorrow.

@Jules ha yeah I figured that! I have never had surgery so I’m scared, but thankfully(??) unemployed right now so I can hopefully just focus on recovering. Hoping to get a date when I go see my doctor on Thursday.

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Keep us updated blossom. If you go Thursday and I go Friday, we should have a lot to discuss.

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luv4pj
I am right here with you on all your symptoms. I do not know anything about Dr Patel, but usually a doctor who does skull based surgery and works with cancer patients is well aware of Eagles. Sometimes they need to remove a styloid to get to a cancer.They are also the most familiar with all the intrcranial nerves that are involved. My guess is you have found an excellent doctor. I hope he answers all of your questions even though some answers will be, " Everyone is different, we will not know for sure until we do the surgery." Or other similar statements.
I have been where you are and I had complications on both sides. I can assure you that my skull base surgeon performed amazing surgeries for me. It took me over a year to feel completely well on each side , but I had continual improvements along the way. I am now 21 months past my first external surgery and 15 months past my second surgery. We have peeled back layers of tight muscles in therapy and I can roll over in bed. Move my arms, and get on a computer. I have been rid of the burning tongue; sore throat feeling of something stuck in my throat for a very long time.
I got rid of 16 years of burning acid reflux and stomach issues. I still have ringing in my ears. I get sick stomach from anxiety so that may be your acid reflux or it could be a vagus nerve.
All I know is this was indeed the scariest surgery of my lifetime and I have had many, even a cervical fusion that I might have avoided if I had the eagles done first. The good in this is that there is usually a great deal of improvement after surgery. Sometimes the recovery is quick and sometimes it takes awhile.
I waited several years for good reasons, but had I found my doctor sooner, I know that my recovery would have been easier. Of course, I did not find my doctor until 3 months before my surgery. When I found him, I knew immediately that I was in the right place. I pray this for you so you can get back to a life free from Eagles.
I would love to hear about another good skull base surgeon who might be willing to help us. I do hope you get a positive feeling from him.
Just remember, that he may also tell you about possible complications. He needs to do that so you are aware.
All I can say is that 2-3 months after my surgeries, especially after the last one, I had hope again. I had the surgeries 6 months apart and 15 months after the second surgery, I am seeing a lot of improvement. The longer we wait, the longer our nerves are impinged and damaged . That can lead to serious long term pain

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I forgot to say that my styloids and stylohyoid ligaments were calcified to the hyoid bone and they were removed from the skull to the hyoid bone.

As someone who to date has had 7 surgeries, 4 in the general head/neck area (sinus surgeries, and a parotid gland removed, plus tonsils out) it’s never as bad as you think and always a little worse at times than the doctor tells you. I’ve been reading about this one as I’m waiting for referral 2 to a doctor who does the surgery as far as recovery time. Make a plan based on what may happen after surgery, I always make a plan based on how/what I’ll be able to eat, and stock up on my favorite foods/drinks of that type, I make sure someone is there to take care of me when I first get out of the hospital, and I make sure I have things to keep me occupied while laying down/sitting up resting.

Surgery is scary and yes there are risks, but most people come out just fine, expect some pain/discomfort. Expect that pain meds may make you a little loopy or sleepy, and expect that you WILL heal, but it will take time.

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I think in the US surgery dates are set up quite quickly, although Covid has complicated this.
You may need a pre-op appt but hopefully that’s it!

Thank you to you all for the positive comments. Although, I am terrified beyond words I know I need this surgery. I just hope I can schedule it ASAP and get this pain out of my throat and neck area. I will keep you updated after my appointment on Friday. I cannot express my appreciation enough for this site and those of you who have responded to me. Just knowing there are others who are experiencing this or who have already gone through this is a comfort. God Bless.

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I’m very sorry that you’re having such anxiety. I am now 3 weeks since my intraoral operation, and all is well. I barely feel the wound anymore. I was able to manage just with ibuprofen, which was most effective. My “nail in the throat” is definitely better than before, and I hope the same will be true for you. I’m still waiting for my ear pain to diminish.
Please try to relax - perhaps some meditation or deep breathing might help. This is not a terribly risky procedure, though knowing that may not help your anxiety. Since you have limited control over what will happen, worrying only increases your suffering, as the Dali Lama says.
I wish you well.

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Hi luv4pj,

I am in NC as well and I see Dr. Ellison at Duke ENT. He is incredibly easy to reach and answered al my questions when I first went in and continues to answer them even though I’m not going into his office. When I had my CT done, he made sure I wasn’t suffering from a sinus infection as well because one of my sinuses had tons of fluid in it. He’s done quite a few Eagle’s surgeries and is really honest about success rate and whether or not he thinks the surgery will work for you. He is wonderful and I love the Duke network. So if you find, you don’t like Dr. Patel at UNC, there is another option!

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That is great to hear, dtcolbert! I actually went to the psychiatrist today for the first time in my life. I’m 50 years old by the way. He gave me Zoloft for anxiety and depression, and Trazodone for sleep. I am debating on when to start them. I have been meditating everyday. It is so nice to hear from people that know how I feel. I am going to beat this!

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I actually seen Dr. Ellison’s name when I was searching for a doctor. My ENT recommended the surgeon I am seeing on Friday so I decided to try him out. I will keep Dr. Ellison in mind just incase Dr. Patel does not work out. It makes me feel so much better knowing there is another option. One of my main concerns was not being able to reach the doctor after surgery.

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You definitely should! My surgery is scheduled for August 6th on my right side first and I don’t worry at all about being able to get up with him. That being said, I really hope it works out with Dr. Patel. As someone who has suffered since childhood with no one believing me, having a doctor you trust and within minutes was like “this is it” was amazing without having to fight for another doctor! First try is always better! Good luck!

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Rae & luv4pj,

There’s a third very experienced ES surgeon in NC & that is Dr. Hackman. He does intraoral robotic surgery apparently w/ great results - removing both the styloid & s-h ligament, but will do external surgery depending on the situation. If either of you end up needing another back-up name, check him out. He’s on our list.

luv,
Don’t forget to ask the surgeon tomorrow how many of these procedures he has done. I do know that my doc on west coast has done over 450+ and highly experienced. I’m not sure with other surgeons on the list where the # of procedure lies to help give you a gauge of level of experience. I always suggest getting a 2nd opinion. My 2nd opinion was a little strange and was not clear about how many he actually had done himself. I got the impression he assisted more than primary surgeon. I had about 18 surgeries in my lifetime, 2 that were pretty narly and required a pain pump after surgery. Im 7 weeks out from my first ES surgery which was external. This surgery was a walk in the park and I had less pain on the 3rd day than probably any surgery I have ever had if that helps ease your anxiety. I followed everyones suggestions here, got wedge pillows and iced all the time and I think made a huge difference in avoiding pain. Hang in there. Your in the right place to help you thru this.

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