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Eagle Syndrome - Online Support Group

How can I check to be certain my surgeon has done styloidectomy surgery in the past? I asked, but feel like I was being lied to

I asked my surgeon if she had done the styloidectomy before, and she scoffed and said she does at least 5 a week. Otger questions I asked, leads me to believe she maybe yanking my chain. Is there a way I can check to see the truth?

My advice is “go with your gut”. There’s a list of people’s past surgeries somewhere on this forum. It was how I chose my surgeon. I had my first surgery Aug 29th 2016. One down, one or two to go.

I initially thought I’d use another clinic but when I called that office the personnel had changed since another forum member had successful surgery from that doctor. I had a conversation with the new assistant that proved to me that the clinic was no longer an option. She was making things up as she went and it was an insult to my intelligence. Plus I am a sound designer and I don’t think I could listen to her smack bubble gum over the phone again LOL.

You need to be able to go to a clinic that you trust. There isn’t a perfect situation, and sometimes you run into less than optimal personalities, but if you can’t trust them and their abilities - those things are the most important! I’m a musician (obviously lol). I survived the worst surgery without facial paralysis - so I should be able go back to my job. You deserve to choose a surgeon with experience. Most of us have been through a ton of misdiagnosis. You deserved to have the best, you’ve earned it. I’ll be praying for you to find who you need.

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Is she on the doctors list? It does sound like quite a lot of surgeries for a supposedly ‘rare’ condition?!

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Thank you MusicGeek!! Just the thing I wanted to hear. After 3 yrs. 26 Doctors, 32 Doctor appts. 4 MRIs and 3 ct scans and ridiculous diagnoses time after time, I am damn ready to have my tusk removed. My dentist first noticed my elongated styloid on my right side over 3 years ago and told me to seek a Dr. to diagnose and remove it. What a nightmare. So when this Dr. told me ‘yes’, indeed I have a very elongated styloid, and she would remove it for me if I wanted, I was ready to go. But when she failed to answer my questions, and the ones she did answer she fumbled, I asked if she had done the surgery before. She scoffed and said she does 5 a week. I thought 5 surgeries a week seemed like alot from all that I have read about Eagles syndrome over the past 3 years (and trust me, I have read it all) and she said “well I guess if you want it out, you’ll have to just trust me” and walked out leaving me with her assistant who wanted me to sign a waiver that allows students to perform surgery on me under this doctors supervision. Now as eager as I am to get my life back after 3 years, this just seemed to slap me in the face and all my friends and family say I should just go get it done because it’s been such a long road, and I’m damn tempted still. Just wish there was a way to ask for a doctors medical record and experience based on something other than their verbal “oh yeah yeah, I do that all the time”.

She is Not on the doctor list here, nor was it listed on her website, and when I asked her why it was not on there, she replied that she probably just didn’t check that box. Also what threw me back was when I told her I belonged to this website and that I would mention her name here to others who were seeking help and she literally rolled her eyes and "oh no, please don’t do that, that’s the last thing I need, and she was dead serious in telling me not to put her name up for others to seek her help.

Did your doctor say whether she does external or internal surgery and how much of the styloid she tries to remove?

I agree that you have to go with your gut.

And I’d be very, very wary about having a student do the operation. There was a forum member in the past who apparently had a student perform his surgery who missed the styloid completely. It took him several years to find a doctor to eventually fix it.

Oh my goodness @Eddie_Bee ! 5 a week is an out and out lie!
There are 52 weeks in a year and not even China does that many surgeries! ALL OF CHINA!!! How many weeks in a year of actually doing surgery is yet another story. So no matter if you look at it statistically or logistically, somebody’s pants are flaming! Pull out the fire extinguisher before it catches someone else and an innocent gets hurt!

Wow
It takes a special arrogance to cut someone open. Sometimes when combined with selfish ambition you get a Sociopath.
I am now resorting to cartoon swearing. What a {^~!~^}?~£_%{#~€’ arrogant |€<},!<#^!!!
Run.

There was a doctor in my area who really wanted to do my surgery. He had done just 1 and worked in a teaching university. As I told my ENT, “I’m sure he’s a nice man, but I’ve been through enough and I will be finding someone with experience”.

I don’t know what area of the country you live, or what country you live for that matter lol. @heidemt and @Jules are the best and do a great job walking the line of diplomacy and truth. Friend them and take them in confidence.

My doctor told me I was number 65. That was over a very long period of time with people like me flying in from out of state. BTW he was part of the blue shield network. At the time of my surgery it was considered “elective”. I’m pretty sure that was upgraded because my carotid artery was found to be in danger.

I’ve said this before , this is the time to be selfish. This is the time to fight for your life and also for your quality of life.

Once I’m done with surgeries (I have one or two to go). You can bet I’m going to write a book and wow, I’d love to use your story. It’s time this kind of behavior is called out. Sort of like the book and movie “The Help”. We deserve to be treated like human beings. Not a bad memory that can be whisked away.

What’s tricky is that we still need to not scare the good guys. There are good surgeons who are doing their best. They deserve to not get hit with our baggage. Keep looking. Keep the faith, it will get better.

Music Geek,
Thank you so much for all your advice. I woke this morning needing to make one decision. That was to make a phone call and schedule my styloidectomy with this surgeon.
If ever you decide to write your book, I will give you such a crazy story everyone will say it’s one of those stories so crazy I could not have made it up. For example, the time the Dr. came in, chewing the last mouthful of food, plopped his butt on the corner of his desk and asked me “why are you here?” I replied, “well, I am in search of a primary care physician and I called the medical center here and asked them who was available and who they recommended, they said you were great and accepting new patients.” Turned out he was an OB. Lesson learned. I am a 45 year old male, as was he.
I have been through two back surgeries. One to remove my broken tailbone. I had to go through four years of limping around in excruciating pain. I was told things like “I see nothing wrong with you, at your age (28) you can’t be hurting this bad” to things like “suck it up” and the best is when they labeled me a DS. Which I found out later by having to steal my medical records and researching it through people I knew in the medical field, Ds means a “Drug Seeker.” Even though I never asked for drugs. Then after four years, 14 surgeons, countless doctors I found the “one”. She came in the room holding my Bible thick file in her hand, looked at me, looked at my file and laughingly tossed it on the counter and said “why don’t you just tell me what the problem is rather than me reading someone else’s opinion”. So I told her everything. I told her the same thing I told every other dr, about receiving a kick to my tailbone, she stopped me, interrupting me with “has anyone taken a full x-ray of your back?” I said “Yea”. She thumbed through my file quickly, laughed when she came across the x-ray report and told me “no. No they did not”. They took two x-rays, neither of them below your L5-s1 region. Five minutes later I was x-rayed in the next room and was returned to the patient waiting room. She came in said “I have good news, and bad news”. She said “good news is, I’m pretty sure I found the problem. Bad news… you need surgery. Tonight!!” You have a broken back! I’m surprised you can walk." I slumped forward and began to cry. She rubbed my shoulder and told me it’s ok. That the surgery was simple. That it was good she found it or I could have been paralyzed. I sat up smiling, wiping the tears away and apologized for “losing it” and told her "no you don’t understand, I’m not scared, I’m happy you found it. Happy to finally know it’s not all in my head or being kicked down the road to another doctor."
I really thought that was just a singular incident, and chalked it up to bad luck. Baha!!
But the stories I could tell about going through the medical community trying to figure out this Eagle’s Syndrome thing…GOOD GRAVY. Doctors I had been referred to saying they had never heard of it. University doctors who were their #1, #2, both after lightly feeling my neck (which they only felt for swollen glands) told me they both “guaranteed” I did not have Eagle’s. Even after I physically grabbed his finger and pushed it into my neck onto the protruding bone I asked him “then what’s this?” He said it was nothing. It feels like something because I’m so lean and fit. Even after I told him I have x-rays of it he literally told me they prove “NOTHING”. Wanna talk about cartoon swearing…Ho boy was I upset. On top of that he had a young med student shadowing him that day and he spent more time trying to flirt with her and impress her with all his DR bs than pay attention to me. And when I asked him if he would prefer if I left the two of them alone, he told me we were done here. I laughed and said I did know we had started yet, told him if he billed me for this BS I’d be back to feed him the bill. I never got a bill. Haha.
Oh boy does the story get better from there. But I digest…haha.
So now at this point I have been out of work for 18 months. Spent all our savings. Sold all my retirements to pay bills, maxed credit cards, borrowed monies, sold investments and will soon be falling behind in all our bills. So to say I’m ready for anyone to remove this thing in my neck would be an understatement. But at this rate it would have been cheaper and faster for me to send my oldest through medical school instead of engineering school and wait for him to do it. So after all their tests, all the appointments, all the missed work, I hold in my hand the original orbital x-ray and a CT scan showing a rather large bony protrusion growing through my neck. I have had friends and family feel it INSIDE my throat. It actually pushes through my throat under my tonsils. But yet not 1 Dr will feel it. Not 1 has diagnosed it as such. So how in the world do I get a referral to one of these “awesome” doctors without a referral or diagnosis? I have been tested for everything. EVERYTHING! I had to wear a heart monitor for a month. $Proved notta. $$Testing for cancers, (and nothing beats waiting 6 weeks for those results) Notta. and more and more testing$$$ and the latest and my favorite the Dr. who asked me if I was impotent. I said no. Asked me if I was i had trouble going to the bathroom. I said no. He still thought I had MS. So through the MS testing I went $KACHING KACHING$. Again…NOTTA!!! I have been nothing more than an open credit card for them to swipe through their bank accounts. I for one have had my fill. I can not believe how these people get away with unaccountable half ass work they do. To quote Jack Nicholson “I’m drowning here and you people are descibing the water!! And YOU people are suppose to be smart, and sensitive?” Accountability is gone, replaced for profits on something that should never be considered a commodity.
I will try and post the pics of the xray if I can figure that out.
So to make a long story longer here… I have decided by only your words to wait some more. Hopefully I can find a way to get the diagnosis I need and then go see one of the doctors recommended here.
I certainly would encourage you to write. I often have considered the same thing. But sitting at this computer typing is about the worst thing on my neck.

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Really feel for you with your dilemma- it is such a difficult decision, and am sorry to hear how long it’s taken you, on top of other medical problems… Hope that you can get some help soon…

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The arrows were drawn on by my dentist. The length shown here is from Sept. 2015. The current length as of Oct. 2016 is just past the the end curve of the jaw bone. About another 5/16th of an inch. The horizontal dotted line is were it would be considered the point at which if the styloid passed, it can become an issue and therefore, be considered as Eagle’s Syndrome. But, like he said, he is not capable of diagnosing it, because he is just a dentist.

Thanks Jules.
And thank you for all you do here. When I first joined I mainly just used the site to read what others had posted and to get a better understanding. This site has definately helped me put a solid grip on things. Just now, am I starting to understand that it’s not me, or all in my head (lol, kinda is, my neck anyways) that I can finally start squeezing answers from doctors and DEMAND the degree of health care we all pay such a ridiculous amount of money to get. So thanks for all you have done here, and thanks to everyone has shared their story. It has all helped me get through this.

@Eddie_Bee I am sorry for what you’ve been through and what you are going through. I can relate to a lot if it. I had a botched appendectomy that set off the metal detectors at the airport and ended up getting a new GP, because she thought it wasn’t a big deal. There are good doctors out there, hang in there. We are in the midst of a strange time socially. Being held accountable is considered cruel. Bad apples in every profession are protected by their friends.
What I am wondering is if you could go to the doctor who figured out your back. Or if you could get the files from the doctor who wanted to do the surgery with students . They are your medical files. You have a right to them.

Eddie: what type of X-ray is the picture you posted? I am starting w/ a new dentist & would like to see if he has that capability. The styloid looks clearer than on a CT.

Can you tell me the name of this doctor? Also, did you have the surgery performed, and if so, what doctor did you use? Thank you.

Some members aren’t always keeping in touch with the site after a few years- have posted some doctor info for you on one of the other discussions.

Yes, I agree!This are rely many surgeries! Let me say- I do know of surgeon - he rely does 3 surgeries per week! I am on Instagram and he has page there! He is famous Russian-surgeon from Moscow, by name David Nazarian Nazaretovich! I found about him, just few months ago- too late to avoid my fiasco surgerie years ago! Who ever have a chance- have a look! I hope I am not breaking any rules here- but he sound rely professional! But to fly ect…I will introduce my self next time- I am just misarable! Hugs to all :kissing_closed_eyes: :kissing_closed_eyes:

Eagle, does he practice in Slovenia now? I did try to google him but couldn’t find him! It’s fine to name doctors if you’re giving a positive review, but for legal reasons we can’t name doctors & be negative about them, so thanks for not naming the doctor who didn’t do a very good job of your surgery.

Hi, Jules- dr.Gasparini works as general chef surgeon in hospital in Izola- Slovenija! While reading their pages- they say- they perform- the most difficult surgeries! Also there in this hospytal is a very good ENT dr.Stopar! He is a head surgeon of ENT unit! I will ask my GP…to help me, to see them as soon is possible! Dr.Stopar have remarkable opinions and rating in doctors page! Maybe together they can do a " miracle"! At the main hospytal - University kliinik, the specialist said my pain is not due to left peace of styloid! Acording to him is scarring! What a bunch of crap- my pain was asap after surgerie! I explaned to you what crap of surgerie was performed with shameful procedure!
Scarring dont ocur in 1 hour after surgerie! His report is disgrace to doctors! He also wrote- that my surgerie was several months ago! WRONG! IT WAS CCA 3 YEARS AGO…ACORDING TO HIM I HAVE SOME CRANIAL NERVE ISUE! BUT NOT DUE TO PEACE OF STYLOID LEFT ! WRONG! YES, I HAVE CRANIAL NERVE ISUE, DUE TO LEFT STYLOID INSIDE compressing on nerves! MY MR was normal- no patology as he sugested! On the end he wrote- the surgerie was a su csess! How can a horrific pain due to surgerie be a sucsess!? I asked him that- he was silent! Also told him with great difficulties- my simpfoms! He did not listen! No comment on that from my site!
I handed him all my papers…how louzy of him fo write such a report! It makes extremily difficult now- to find a surgeon here because of such lausy report! If this does not work…I dont know what I will do° hugs and thank you :cry::kissing_heart:

Hi MissLiz,

You might want to consider Dr. Cognetti in Philadelphia. He has done many ES surgeries & has a good reputation. I know that will require that you travel some distance, but you’ll be in good hands with him. I’m attaching the link to our US Doctors List below. You can search the site for mention of any doctor on the list. Most of their names have come up in one or more discussions. Click on the gray magnifying glass icon above to get a search window then type in the doctor’s name you want to research. A list of discussions where that doctor was mentioned will come up. Reading those will help you. Again, there are some doctors whose names have only been mentioned once so there won’t be as much info about them.

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I hope you can get a referral there, sounds promising! Let us know how you get on…