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Eagle Syndrome - Online Support Group

Intraoral or external. Two doctors opinions

#1

Hello fellow Eagle sufferers. (I am not naming the doctors here but the doctor in Philadelphia is on the list. I am quoting from my appointments so I don’t want to be libel - if that’s possible. )

I have been offline for a while in a holding pattern waiting for my scheduled appointment with Dr. C. in Philadelphia. The appointment with Dr. C. was yesterday via video conference. I also had a face to face appointment today with a surgeon in Manhattan, whom I will call Dr. NYC. Though Dr. NYC has done 40 ES surgeries or so he’s not happy about being listed as a doctor “on some blog somewhere who does Eagle surgery.”

It was my the first time in meeting Dr. NYC. He’s a skeptic but after feeling down my throat with his fingers to feel the styloids poking my throat, not once, not twice, but three times he said that “he’s beginning to believe that I have ES.” (Needless to say that my throats now is very raw). He does intraoral surgeries where he breaks off the tip, though he would do external " if I wanted." I told him that I had a consult with Dr. C and that Dr. C. said that he has done hundreds of ES surgeries. (That made him laugh - in an incredulous way - as if there are that many people out there who need the surgery).

Dr. C. said right off the bat that he believes that ES exists and is treatable through surgery. He said that he use to do both intra-oral and external but now will only do external. His belief is that if the styloid is only partially removed and there are still symptoms, there is no way of knowing if it was successfully. If it’s fully removed and there are still symptoms, then he can say definitively that it’s something else. Before the consult I sent him all of my records and included a cover letter that outlined all of my symptoms and the tests I had and doctors I’ve seen. (Since the end of July 2018 the number of doctors and test is at 29!). He said that the outline was very helpful. Since he has done volumes of ES surgeries he must have a better sense of what’s really happening with the styloid on the imaging. He said that mine are both very thick and the left one is very close to the bones in my spine.

If I had to make a decision last week I would have said that I would have done introral - both at the same time. I am so tired of my throat feeling like onset flu symptoms. After talking with Dr. C I will have him do the surgery. To be fair, good head neck sugeons can do the surgery and both said I am a candidate, but we all want to feel believed and that able and willing to do the surgery- not just if I want.

#2

BrooklynGirl,

Point well made - surgery “just if you want it” :roll_eyes:. That’s pretty unfeeling of a doctor who claims to know about ES & has done a number of ES surgeries!! Clearly he has no comprehension of how debilitating the symptoms can be. I’m glad Dr. C was more encouraging. He will do good by you! So glad you had a positive conference call w/ him, & I hope you can get on his surgical schedule soon!

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#3

I had a similar experience and took it as a warning from the universe to not use the first guy I saw. Some concerns I had after the surgery were addressed with compassion by the surgeon I did go with. I believe the first guy I saw would have blown me off if I reached out to him post op with some of my issues. Good choice by you.

#4

Glad you have found a doctor you feel comfortable with & are able to have surgery! Any ideas how long you have to wait?

#5

DR. C - if it’s the same DR. and I’m sure it is. Did mine less than 3 months ago. (Jefferson) He said he was leaning that my issue was (GPN ) Glossopharygial Neuralgia instead of ES but I suffered so long and since the pain pattern changed (I was sure willing to get ES surgery first rather than brain surgery) he opted to do it. He removed the SP and a calcified ligament. A brain surgeon at Penn and Dr. C said I could have both issues - They are very similar in the location of the pain. And type of pain. ANyway I’m glad I had it done. Jury is still out on whether I made the right choice.
Good Luck

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#6

Rufus - Since you’ve had significant GPN pain for some time, it may take awhile for it to subside after your ES surgery. Damaged or irritated nerves can take many months to heal & the pain they cause goes away so gradually that sometimes we don’t actually notice it disappearing till it’s really gone or significantly better. Your ES surgery most certainly wan’t a mistake. At the very least, it will rule out one possible cause of GPN. If you have bilateral ES then removing the other styloid process or calcified s-h ligament will double that ruling out of possible causes for GPN. Let us know how you feel 4 & 6 months post op. I think you’ll see a significant improvement.

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#7

Yep. Same doctor. I am waiting for the office to call me back with a surgery date.

I have some pain from what could be compression on my glossopharygial nerve - pain in teeth, check, and ears. It sounds like you had a rough go of it after surgery. How are you feeling now 3 months post op?

#8

I never had cheek or tooth pain. Throat pain, the roof of mouth all the way in the back. Unbearable - off and on for 10 years.
It could disappear for 6 months then return. That’s a symptom of GPN (goes away for a while) anyway I had the pain for 20 of the last 24 months and the pain changed - especially when I turned my head to the left which I found out could be a symptom of ES so I opted for the surgery. I had a little pain the other day but so far so good - but guess what - I think coffee affects my Eagles?? NO Shit - so I stopped drinking coffee for a few weeks and the pain was gone. I started again and the pain returned a little bit. SO I stopped again??? Who knows right??

#9

I am sad to read your pain locations, but feel so vindicated every time I see someone with teeth, cheek and ear pain as my surgeon says that just isn’t part of ES. When I woke up from surgery the first pain that went away was teeth pain! Now that the pain has moved to the other side and it’s the same it is much easier to live with because I know what it is!!! Yours too will go away!!!

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