I hope that your next surgery goes better, it’s so frustrating to have surgery & for doctors performing it to be so ignorant! I hope that your new doctor is skilled; we do have a list of suggested questions to ask doctors in the info page about surgery, here’s a link to that:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Just in case you want to clarify anything with Dr Campbell…
Let us know when you have a date scheduled 
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Great news that Dr. Campell is familiar with ES! As @Jules mentioned, it would be worthwhile asking Dr. Campbell the suggested questions about surgery on the list she sent so you don’t have another poor outcome from a half done surgery.
You’re very considerate for thinking of your boyfriend’s driving limitations when choosing where to have your surgery. I’m glad Dr. Campbell offered you a closer option, and yes, please let us know when you have a surgery date & if you have any questions before then. If you have a good outcome, we’ll add Dr. Campbell to our Doctors List. Also, I’ll make a note that there are doctors at IU Health who do ES surgery.
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My surgery is Monday February 24th… I’ve been pretty uncomfortable the last couple days, I’m ready but nervous tho I do kinda know what to expect.
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I’ll put your surgery date on my calendar & will pray for you especially on 2/24. I’m glad Dr. Campbell accommodated you by allowing you to choose where to have your surgery. He sounds like a really compassionate doctor. I added him to our Doctors List in hopes that you have a good outcome. I’ll look forward to your posts as you recover from your surgery. Good that it’s only a bit over a week away!
Praying all goes well for you! 
I did post on my profile but again I think it’s not showing it, I couldn’t even find it. Surgery went well. Pain level of course has been high. In recovery I was given 3 iv doses of painkillers, 2 norcos once I was ready to try to eat and drink, and before leaving a shot of morphine and it all barely took the edge off. I’ve been resting for the most part but been up and down. Trying to keep up on the pain meds but I’ve slept through a few times. Swelling is up today so I’ll be trying to ice off and on. Been eating jello, pudding, shakes and broth and sipping water. Thanks for your thoughts and prayers.
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Thank you for your update @Redirish98. I’m glad surgery is behind you.
I’ve read & heard that redheads have a genetic predisposition to greater trouble with pain management. My husband is a redhead, & when he had dental work done, novocaine didn’t numb him even with a second round so he had to white knuckle through it.
Try to ice every couple of hours for 15-20 min. I know you’ve been through this before so know the drill about sleeping & resting with your head elevated.
Another member recently posted that her doctor told her not to set an alarm to wake herself up for pain meds at night as sleep is important for recovery so it’s not bad that you slept beyond the time you were due to take a pill. A course of steroids (dexamethasone or prednisone) can make a significant difference in reducing early post op inflammation & pain. If yours is too uncomfy, you could call Dr. Philllipsen’s office & request that. It’s usually a tapering 10 day dose that’s given.
I’m glad you’re able to eat & hope the really painful days end soon. Please let keep us updated as to how your recovery goes.
Praying that you can get the pain under control, thinking of you 
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This week hasn’t been too bad. I’ve been quite tired and the pain comes and goes, worst upon waking and after eating. Things that I thought would be ok have left my throat burning. Warm fluids and soft foods seem to go down better than cold. Tonight I tried a shake to take a break from the bread soaked in creamy soup that I have been having for dinner and the pain struck so horribly I couldn’t have more than a few sips and I was brought to tears. It settled a bit after applying an ice pack but my goodness I forgot how bad it could feel. Starting the second week post op so hopefully not too long before these episodes are past. Thanks for all your thoughts and prayers and please keep them coming 
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@Redirish98 - I’m sorry that happened to you last night.
From what you said about the pain, I wonder if you’ve gotten first bite syndrome (FBS). It isn’t uncommon after surgeries in the area of the neck where styloidectomies are done. It’s caused by over activation of the parotid gland (your largest salivary gland) which is caused by the glossopharyngeal nerve (GPN). The GPN can become irritated by surgery or was already irritated by the elongated styloid. I had FBS, & it didn’t start till near the end of my first week after surgery.
FBS causes intense pain for several seconds when you first start to eat but usually settles down w/in a minute or two. It sounds like yours lasted longer than that. It can take several months to go away but it will become less intense as time passes. I’m glad ice helped it to settle.
Things I found that made it a little less severe were to drink a lot of non- sugary fluids during the day (80+ ounces) to keep my saliva more dilute & sometimes holding my food in my mouth for a bit before starting to chew also helped. You could also try icing your neck just before you start to eat to see if that reduces the pain if what you experienced is FBS.
I’ll pray whatever the cause is that it will go away as quickly as it started.
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Hope that the pain settles soon, and you can get back to eating better…strange that the cold is making pain worse, just triggering nerves I guess or causing everything to contract & tighten up maybe, cold always made my neck pain worse.
Thinking of you & praying for you
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Thanks for your support
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I just came across your info. I have had really bad luck with Doctors at IU (Indiana) when it comes to the Vascular side of Eagle Syndrome. Was your surgery for Vascular Eagles? Did they go in through the mouth or do it externally? Internal is not going to work for me. IU ENT office downtown Indianapolis told me that Eagle Syndrome doesn’t affect the carotid artery or jugular veins and cant cause strokes. I kid you not. I was dumbfounded and rendered speechless. The scheduler for Neurology told me that the Chief of Neurology had never heard of Eagle Syndrome. This is a been a real nightmare.
I have to prove to insurance that no one in Indiana is competent for my condition so need to figure out if I need to contact David Campbell for an appointment.
My great primary care physician tried to get me dynamic testing but was told by the Supervising radiologist that they can’t do it and to send me out of state. Neurovascular department told me they can usually get the testing they want that other Doctors can’t get but then the surgeon did not catch that my IJV is getting crushed before the report came out that said it was getting crushed.
I feel like I am riding in a clown car.
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I’m so sorry you’re having such a hard time with things. I had some of my own issues trying to get this taken care of. Dr Campbell is through IU Health but his office is located in Avon. He seemed very knowledgeable and I had no problems with him thus far. My surgery was intraoral, through the mouth as the styloid was right in the tonsullar area and it was very low risk as it wasn’t pressing on or near the arteries or anything. I hope you’re able to sort this out and get the help you need, keep me updated if you’d like.
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He probably can’t help me BUT I might at least get a better response from him . I have found that when a dr puts something in your file that is wrong it really has a ripple effect. A wrong note saying no sign of jugular issue prevails instead of actually reading the report or looking at images. Cardiologist and interventional pain management look at that note and then treat me like I don’t know what I am talking about. It is maddening
I am going to have to work at making that neurovascular surgeon clarify his ridiculous note.
At least you had a version of eagle syndrome that has more Doctors who can do the surgery
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Hey Jackie,
For those of us with a rare condition, I have to say, this is VERY common. And it can follow you for years (and YEARS). Medicos hate having their knowledge questioned, especially by the patient. My situation is not Eagles related, but rather neurological, seems it was easier to label me ‘crazier than a box of frogs’ than to actually investigate. That was until it all got to the point where my symptoms were becoming life threatening… …then they investigated a bit more. I had this Dr came out with the line “Why didn’t you speak up earlier?” GGGrrrrrr. I had but no one was listening.
And still today some 30yrs and multiple neurosurgeries later, I have medicos come out with “Ohh, but you have a history of ‘mental health issues’…” I also have a history of dealing with arrogant medicos, but that’s never identified as a contributing factor.
Just know you are not alone in trying to deal with medicos and a rare condition.
It can be infuriating 
Merl from the Modsupport Team
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