Hello, let me preface this story by stating that I called several Ent and hospitals and was called back by a nurse at ochsner New Orleans cancer center stating that there was an Ent that specializes in Es and I could make an appointment . I then made an appointment with Ent and was told to bring my ct and mri and whatever info I had to the appointment. So I have been nervous all week and really worried about my condition.
I drive an hour and half to New Orleans from my home show up 2 hours early and wait to be called back to see Dr. Miranda Celestre . This is how it went … She walks in and ask how can I help you today? At this point I go into a very condensed and to the point story of my Es symptoms. I stop, She inhales and says Let me just say you probably don’t have Es but how did you end up seeing me . I said well I did extensive research and was told you were an Es specialist and performed both surgical procedures! She said no I don’t treat any Es patients and I do not perform the surgery . Now I’m like WTH and I say and you just diagnosed me without looking at my Ct scan ? This is where it gets really stupid ! She says, well Es deals specifically with the Glosopharongeal nerve only, and the symptoms your having could not be caused by Es . So I’m bitting my tongue at this point and I said actually the symptoms for ES are vast and can be very complicated. I then asked if she could check and see if anyone else sees Es patients . She left the room the nurse came back and said a doc their does treat Es and she could make me an appointment for next week . I asked for my money back for waisting my time and the refunded me my $50 copay . It was completely frustrating and ridiculous!
Oh My Goodness, Tim! That’s terrible! I’m so sorry you had that experience but at least you were able to get your $50 copay back, but sadly, they can’t refund your time. It’s so sad that so many in the medical community are either not informed or are ill-informed about ES. I’m so proud of you for “biting your tongue” while still being able to make the statement you did about ES symptoms. Do you plan to see the doctor she is referring you to? I recall you have a couple of other ES appointments coming up as well.
I am so sorry Tim, I had a similar experience with the Mayo Clinic in Jacksonville, FL. I did see a doctor at the Cleveland Clinic a four hour drive in South Florida, he was willing to help me, but he was an ENT and with little experience. I finally found a neck and throat cancer specialist who will operate tomorrow in Celebration, Florida. The directory is a big help. Even if it requires travel. Out of network insurance coverage may help. Also if cost is an issue, consider a Go Fund Me page. Don’t despair, you’ve found a great support group! You are not alone.
Katflorida, best wishes for tomorrow! I’ll be praying for you & hope that all goes well. Let us know how you get on if you’re able to. God Bless 
So sorry that you were misinformed Tim, & had such a wasted trip! At least you do have other options and I hope that the next appointment goes better for you. Thinking of you…
Hey Tim,
I’m very sorry that you had such a frustrating experience. That could have happend here too. I had similar experiences and they can be even worse, when they do a senseless surgery e.g.
That means some wasted month. Had that too.
Don’t let that disencourage you. Hopefully you can see a good doctor for ES soon. Stay strong.
Best regards
I’ll be praying, too, Katflorida! I have your surgery on my calendar.
Thanks, I’m waiting to be checked in.
Thanks prayer warriors!!! Dr said surgery went much better than expected. Resting well here at Advent health hospital. No paralysis either. Intra oral surgery with microscopic laser. I recommend the lidocaine lollipops if you have a compounding pharmacy. Also thanks for the advice to elevate and ice, ice, ice!
Thank you for the update! So glad your surgery went well. The first couple of days post op can be less painful than the following period as post op inflammation can peak from days 3-6. After that symptoms/pain usually begin to gradually dissipate. I’m so glad you found out about lidocaine lollipops! I’m sure they’re a Godsend!!
I will continue to pray for steady healing & that you’re back on your feet ASAP!
Glad that surgery went well, sending you a hug & more prayers! 
Congrats kat that all is well! Ill have to try those lollipops!
Tim,
I have had similiar incidents and have found the reason to be the appointment setters to be at fault for misrepresenting the areas of specialty or focus of practice. Often its a group of doctors. I suspect this appointment setters / customer service representatives are usually low wage workers with little medical experience behind them or knowledge of the practice specialty. I don’t know if they just make it up as they go along to avoid have to go beyond just making the appointment or they have a list to reference? All I know is that it is very wrong to do that to patients especially those that travel from outside the area. Unfortunately many don’t really care beyond just making the appointment.
The only thing I can suggest is to ask for a medical assistant or nurse to confirm how much experience the doctor has in Eagles and/or # of surgical procedures they have done for it. Dont ever count on appointment schedulers to have the detail you need to make sure you arent flying blind.
Rock star in that you got your money back. Wow. I never heard that happen.
Which doctor ended up doing your Surgery and how did it go?
Sorry that happened Tim. Which Dr did they end up referring you to? And how did that visit go? I live 2 hours from NOLA and that would be amazing to drive 2 hours vs 20 hours.
Hey my styloids are not elongated do they do not see me as a
Hey my styloids aren’t elongated so they do not see me as a surgery candidate… However, something is causing compression in that area . My symptoms are slowing resolving but I’m not working and avoiding pretty much everything I like to do from fear of returning. I may end up trying steroid injections in the styloid area. Both docs were nice but still seem a bit in the dark about the vast symptoms that can occur from this area being compressed. In a nutshell they both are suggesting pain management:(
Gotcha, well that saved me a trip to New Orleans. But how long was your styloids? Did they cause compression on anything? And how where they shaped?
What about a Disgastric muscle putting pressure on it?