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.
Point well made - surgery “just if you want it” . 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!
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.
Glad you have found a doctor you feel comfortable with & are able to have surgery! Any ideas how long you have to wait?
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.
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.
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?
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??
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!!!
I met with Dr. C. for my pre-op appointment. I came away a bit confused. During my phone consult he said that he only does external surgery so that he can remove as much as the styloid as possible - so that there will be no doubt that ES is not the cause of any possible remaining symptoms.
When meeting him in person for the first time for the pre-op appointment he examined me by feeling for the styloid from the inside of my throat. It is just about poking through on both sides. He was surprised by how much he could feel and said that he believes that I have ES - and that he could remove it intraorally if I wanted. What? He then left it to me to decide whether to have external or intraoral surgery.
Other doctors too believed me when they could feel it and said that they could remove it intraorally. I came away feeling that doctors generally do not believe in ES unless it is palpable.
He did say external is cleaner, has less of a risk for infection and is less painful. My choice is external because I believe that I have nerve related issues on the left and that there is more control, and sore throat pain, like strep, is almost impossible to sleep through. (The right side is just poking pain that radiates to my tongue - I would possibly do internal for the right side.)
Another confusing bit was that the nurse told me to use warm compresses post op. She said no ice. Everyone here post surgery seems to use ice to keep down the swelling so now I am confused. Any input on this would be most welcome.
Thank you for listening.
this is my face as I currently have ice on my neck 2 weeks post-op.
Yours is the first post I’ve read on this forum where Dr. Cognetti even mentioned intraoral surgery. I thought he was a strict external surgery guy. Very interesting. It is my opinion (not a doctor here) that external surgery is always the way to go especially if your styloids are very long as the styloids can be removed to the skull base, & nerves/vascular tissues can be monitored during surgery. Additionally, if Dr. C notes ligament calcification, he can take care of that at the same time. Intraoral surgery allows for none of these scenarios but only a shortening of the styloid - not total removal & little or no access to the s-h ligament unless additional incisions are made in the throat & no nerve or vascular monitoring. There is a greater chance of post op infection going through the throat so there’s another disadvantage. If you’re feeling brave, you can watch both forms of ES surgery on YouTube.
I have NO IDEA why his nurse would be offering you post op advice at this point since you aren’t even scheduled for surgery. Her advice is not the best medically- based advice although there have been members here who’ve found using ice post op was too painful so they resorted to using heat to help relieve pain. Ice for the most part both relieves pain & helps reduce swelling so would be the preferable, immediate post op treatment.
You need to go w/ your gut on which surgical approach to accept but now you have my opinion & that of many others on this forum that external is the better way to go.
I am scheduled for this Monday.
Woohoo, not long to wait…I’d definitely go the exteral surgery route. Again, have not heard mention of Dr Cognetti doing intra-oral. I couldn’t ever use cold as it set nerve pain off, but I’d query the nurse’s advice after you’re op if you can. Hope the surgery goes well, will be thinking of you & praying for you…
Putting your surgery on my calendar so I can specifically pray on Mon.!