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 āgo with your gutā. Thereās a list of peopleās 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 Iād 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 donāt 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 isnāt a perfect situation, and sometimes you run into less than optimal personalities, but if you canāt trust them and their abilities - those things are the most important! Iām 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, youāve earned it. Iāll 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 ārareā 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 āyesā, 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 āwell I guess if you want it out, youāll have to just trust meā 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 itās been such a long road, and Iām 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 āoh yeah yeah, I do that all the timeā.
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 didnāt 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 donāt do that, thatās 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 Iād 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, somebodyās 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 {^~!~^}?~Ā£_%{#~ā¬ā arrogant |ā¬<},!<#^!!!
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, āIām sure heās a nice man, but Iāve been through enough and I will be finding someone with experienceā.
I donāt 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 āelectiveā. Iām pretty sure that was upgraded because my carotid artery was found to be in danger.
Iāve 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 Iām done with surgeries (I have one or two to go). You can bet Iām going to write a book and wow, Iād love to use your story. Itās time this kind of behavior is called out. Sort of like the book and movie āThe Helpā. We deserve to be treated like human beings. Not a bad memory that can be whisked away.
Whatās 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.
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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 itās 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 āwhy are you here?ā I replied, āwell, 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.ā 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 āI see nothing wrong with you, at your age (28) you canāt be hurting this badā to things like āsuck it upā 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 āDrug Seeker.ā Even though I never asked for drugs. Then after four years, 14 surgeons, countless doctors I found the āoneā. 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 āwhy donāt you just tell me what the problem is rather than me reading someone elseās opinionā. 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 āhas anyone taken a full x-ray of your back?ā I said āYeaā. She thumbed through my file quickly, laughed when she came across the x-ray report and told me āno. No they did notā. 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 āI have good news, and bad newsā. She said āgood news is, Iām pretty sure I found the problem. Bad newsā¦ you need surgery. Tonight!!ā You have a broken back! Iām surprised you can walk." I slumped forward and began to cry. She rubbed my shoulder and told me itās 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 ālosing itā and told her "no you donāt understand, Iām not scared, Iām happy you found it. Happy to finally know itās 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 Eagleās Syndrome thingā¦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 āguaranteedā I did not have Eagleās. Even after I physically grabbed his finger and pushed it into my neck onto the protruding bone I asked him āthen whatās this?ā He said it was nothing. It feels like something because Iām so lean and fit. Even after I told him I have x-rays of it he literally told me they prove āNOTHINGā. Wanna talk about cartoon swearingā¦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 Iād be back to feed him the bill. I never got a bill. Haha.
Oh boy does the story get better from there. But I digestā¦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 Iām 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 āawesomeā 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 $KACHING KACHING$. Againā¦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 āIām drowning here and you people are descibing the water!! And YOU people are suppose to be smart, and sensitive?ā 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 hereā¦ 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 itās taken you, on top of other medical problemsā¦ Hope that you can get some help soonā¦
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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 Eagleās Syndrome. But, like he said, he is not capable of diagnosing it, because he is just a dentist.
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 Eagleās 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 itās 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 youāve 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 wasnāt 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 arenāt 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 ectā¦I will introduce my self next time- I am just misarable! Hugs to all 
Eagle, does he practice in Slovenia now? I did try to google him but couldnāt find him! Itās fine to name doctors if youāre giving a positive review, but for legal reasons we canāt name doctors & be negative about them, so thanks for not naming the doctor who didnāt 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 GPā¦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 AGOā¦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 papersā¦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 workā¦I dont know what I will doĀ° hugs and thank you 
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 youāll be in good hands with him. Iām 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 doctorās 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 wonāt be as much info about them.
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752
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I hope you can get a referral there, sounds promising! Let us know how you get onā¦