Hi guys, i haven’t posted for a while, still going through all the same symptoms and still waiting for my 6 mth appointment with the ent surgeon to decide whether i want to go ahead with surgery. I have a vet friend who has a g.p friend who used to be a junior doctor in ent, she asked him what he thought about surgery for eagle syndrome and he basically said that it is something surgeons do to shut people up!! I couldn’t believe it. It has really made me question whether i shoukd have the surgery though where as before this i was certain thats what i wanted. Surely this can’t be true? Surely a surgeon wouldn’t put soneone through surgery just to shut them up? When i asked hiw did he explain the positive results he said that it was a placebo effect! I’m putting my trust in these type if people and i just don’t know what yo do now.
I sure hope that junior ent never has any patients with ES. And even more so I sure hope that junior ent just gets out of medicine altogether - WOW! I am pretty much speechless.
Hi Steph,
All I can say is YIKES! I’m so sorry for that attitude. It’s terrible!! Some surgeons only snip the tip off the styloid process & claim to have shortened it (which they did but not enough). He probably isn’t aware that in bilateral cases, the pain & symptoms persist after the first surgery because the remaining styloid is symptomatic. Thus he thinks ES surgery is a failure. He needs to know that once the second styloid is removed, symptoms usually disappear w/in a few weeks to months. I recently learned that one of the better known surgeons in the US doesn’t know that either.
Ask your surgeon some more pointed questions like - How much of the styloid process do you remove & do you remove the stylohyoid ligament? Do you make sure the cut tip of the styloid process is smoothed off after cutting it? Do you electronically monitor the nerves & vascular tissues in the neck during surgery? These questions will help your doctor to know you’ve got some knowledge of how the surgery can be done which may improve his attitude.
The best surgeons cut the styloid back to as close to the skull as possible & remove the s-h ligament whether it’s calcified or not (so it can’t ever calcify & cause another problem). In order to cut the styloids back to the skull base, the surgery has to be done externally - through the neck - as the intraoral approach doesn’t offer good enough access for the styloid to be cut back that far nor does it allow for nerve monitoring.
Don’t give up on having surgery. Just make sure you know what you’re getting into before you have the surgery. The surgeon owes you a detailed explanation of how he does the surgery so you are educated. Don’t let him intimidate you into not asking questions. Stand your ground!
This is frightening. So it’s perfectly acceptable to remove an ingrown toenail but not okay to remove a basically overgrown and ingrown styloid? Karma has a way of dealing with people like that.
I completely agree with all the above comments- that’s why it’s important to go with an experienced doctor, because they know this is a real condition with real symptoms… & that it can be cured! There are enough research studies out there by respected doctors showing good results from surgery- don’t let the thoughts of one ignorant doctor put you off your decision; make it because it’s the right thing for you (if that’s what you feel), not based on a totally skewed opinion!
I think if someone is just starting out on the journey, it’s important to always pursue the most likely diagnosis. Eagle’s is rare, even among people with an elongated styloid. That said, ENT’s do need to be aware this IS a real clinical diagnosis with a moderately easy cure. I want to ask skeptical ENT’s—“If I surgically implant this house key to your temporal bone and tangle it up in a variety of your cranial nerves, at the same time compressing you carotids and jugulars, with its tip poking you in the back of the throat–what signs and symptoms would you exhibit?” So please, if you’re going to tell me I don’t have Eagle’s Syndrome, offer a more likely diagnosis I can pursue or rule out
julianeagle ~
GREAT ANALOGY! I love how you think!!
Wow, wow, wow…You do know that doctors can be “fired”!!! I have had to do that when they become condescending or try to one-up on you. Good luck to that doctor. We know our bodies better than anybody else, even doctors. Some have gone into practice with a business degree in mind, and some because there are doctors in the family, and then, there are those that went into medicine because they care.
If you are dealing with a doctor who is dismissing how you are feeling, suffering, you need to either put him/her in their place and get another doctor who will be on the same page with you. Question them, interrogate them for answers. Let them know that you mean business and you want closure for this devil called Eagle’s Syndrome. You know what you have…I went for 17 yrs. without a diagnosis! They all thought I had postpartum depression because I had just had a child on Dec. 8, 1987. My first onset of ES was on Dec. 24, 1987 and it felt like I had swallowed a bone from a LeMenu chicken meal. It was horrible, and that night they scoped me at St. Luke’s Episcopal Hospital in Houston, TX. I was basically the only patient on the floor on Christmas Eve. I went to all kinds of doctors but, never a proper diagnosis.
You know, I was not a religious person but, doctors were not helping so, I had to go directly to the Great Physician, not the mechanic. I had to go to the “manufacturer”, the one who made me…I had no other source but, my Creator. I was in so much pain and life was being snuffed out of me. I had a 4yr. old and a newborn and I couldn’t do my role as a mother. My husband suffered too because he couldn’t help me. It was so stressful for him because I was going to all these doctors and none of them could diagnose me.
Once I started to go to the Great Healer, HE started to order my steps. It was a long wait but, he did show me where and when he would perform my healing. You have all the cards in your hands. Pursue your healing with everything you’ve got and keep pushing forward, no matter how negative things get. Have the surgery. If you don’t trust the doctor you have, go wherever you have to go. Do what you have to do to get the surgery.
My life changed totally. It was a hard surgery but, I no longer suffer with that sensation in my throat. Mine was done through my mouth. I am so happy that God ordered my steps and HE led me to Oklahoma City, OK. where Greg Krempl MD diagnosed me and then I had surgery April 29, 2004, a week after I got diagnosed. Till then, I had no diagnosis for 17 yrs.
I want to encourage you to press forward and have the surgery. Living in pain and fear is not living.
I concur with all above. I had to change doctors. I had to change churches. I had to change friends.
My ES had a broken styloid sawing on a jugular with a Carotid bundle on one side and elongated on the other. The imaging didn’t show the break and I was recommended to have my first surgery on the side that images showed as longer. I told the surgeon I would rather have the more symptomatic side done first. This is after being sent home the first time from our 800 mile trek telling me to take gabapentin for a month and then decide if I wanted surgery.
Today everyone shudders at the possibilities. I prayed and just knew I can’t explain it. Listen to yourself and don’t listen to those who only confuse their own opinions with intelligence.
The funny outcome is life is better. Even though I lost my livelihood from the damage before surgery, having my current doctors church and friends is a huge upgrade from what I put up with before. Hang in there. It will get better <3