I don't mean to creep anyone out, but I sent friend requests to other Louisiana members. If anyone is interested, I would like to be able to chat about local docs who might be able to help and get an idea of your experiences.
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I live part time in Louisiana and part time in Florida. I haven't found any doctors in La who know about Eagles yet. I am in the Baton Rouge area. My surgery was in Florida which is where I am a permanent resident now. I grew up in NO and then lived in BR for 26 years. Been in Fl for about 10, now trying to slowly make my way back home, though when the weather is this cold here, I wonder why. I will say that Louisiana has better medical services than in my hometown in Fl, but I was lucky that my ENT in Fl had Eagles so he diagnosed it right off. A win for me, though.
I went to see a doctor ENT Skull base surgeon in BR before my surgery, he had never done a surgery for Eagles. He didn't find my CT scan remarkable and pretty much shrugged his shoulders and said that the surgery was easy just like a tonsillectomy. I didn't feel comfortable because he didn't seem to have any clue as to the pain related to Eagles nor the pain I might suffer after. Maybe he figured that he was so good, that I wouldn't have anything to worry about, but he was way too cavalier. That made me run back to my ENT in Florida and schedule the surgery.
If I were you, I would check around for Tulane ENT department in New Orleans or LSU whereever their ENT school is. LSU could have some doctors in NO or BR or Shreveport. Dr. Dileo was not my choice, you might want to skip him. Oh, also, I waited 2 hours for an appt that they required me to be 45 minutes early for as well. If I had throat cancer, maybe they would have treated me better, don't know. Hope this helps you some. Hope someone else in Louisiana can help you. Viperbone had surgery in Pittsburg. She didn't find anyone in her area either.
Great info, emma. Thanks. I am between NO and BR, so I guess I am lucky, but I live in a very small town and as I looked through the list of recommended physicians, NONE were in LA. I am the only patient my dentist has ever seen with ES, but he is young and seems to be the kind who will help me find someone who can help. I have an appt with him later in the week. I hope I get some direction.
Cajun country, I see. Good luck, if I remember to ask around, I might find something,but I don't know much about your area. Keep looking under the rocks, you might find something. Good that your dentist is interested. That is a start.
http://www.medschool.lsuhsc.edu/otorhinolaryngology/clinical_servic...
You might want to check out these doctors. As I said, Dr. Dileo was not on my list of doctors that I would like, but there are some listed that may be closer in New Orleans. I needed a referral to Dr. Dileo, so if you or your dentist does some research and calling, you may find one of these doctors has experience and maybe even your dentist could do a referral. My personal impression would be to skip Dr. Dileo's office, but you might get a totally different feeling, so I wouldn't count anything out.
I am sending you a friend request.
http://www.touro.com/headandneck touro in New Orleans, you might find that one of these doctors is experienced as well.
Thx. I considered ochsner, tulane, and lsu but never thought of touro!
I was just diagnosed and live outside of New Orleans. I am currently in search of a doctor in this area and I am will to drive any where to see a doctor. I was wondering if y’all have had any success finding someone in this area for treatment?
If you look in the Doctors Info section, there’s an updated doctors list. Don’t think there’s anyone in New Orleans on the list, so you might have to travel!
I have not heard of anyone yet, either. I don’t even bother to look in Louisiana. Things are tough here. The medical system in Louisiana has been decimated by the state’s lack of funds and near bankruptcy. I am sure there are people in Louisiana with Eagles, but they have probably never been diagnosed. More likely diagnosed with Trigeminal Neuralgia, Fibromyalgia and TMJ and a multitude of other things. That makes me think that I should send a copy of my CT scan and report to my previous doctor in Louisiana. She used to be quite interested in new advances. It could not hurt the process of moving things forward.
I’m in Baton Rouge and just met with Dr. Hernandez at Mary Bird. I really like him but still trying to find others that he has operated on and more info about him.
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Which doctor did you see in Baton Rouge? I’m currently seeing Dr. Stephen Hernandez that was on the list for the eagles Facebook page and so far he has been no help.
I’m sorry to hear that Dr. Hernandez hasn’t been helpful for you, @Michelled. Has he not offered to schedule you for surgery? Are you able to travel outside of LA for surgery?
@emma saw Dr. Nuss for her revision styloidectomies, but we’ve heard he may be taking new patients or is not doing ES surgeries any longer.
These are the only other doctors we have listed for LA.
•Dr Daniel Nuss, Lake Head and Neck Center, Baton Rouge, Mary Bird Perkins Cancer Center (Skull base surgeon) ~ 5/29/21 - We were told by a member that Dr. Nuss is not currently accepting new patients. https://marybird.org/doctor/nuss/
•Dr Moore, New Orleans- has done a research paper but we don’t know about whether he’s done surgeries.
Wow, I am sorry to hear that. In what way has he been no help? You do not have to answer that. I realize that Louisiana is a very litigious state. Perhaps it has to do with the difficulty of being able to balance the risks against the outcomes. It is a difficult surgery to perform given the multitude of unknowns. Skull base surgeons mostly operate on cancer victims who have no choice but to risk nerve damage.
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I live in thibodaux. I only saw an facial surgeon who didn’t think that was my problem despite enormous styloids that were surely creating some of my symptoms. I have since been researching functional medicine I had a few vitamin deficiencies and corrected those. Then i stopped everything toxic. Changed to nontoxic shampoo, soap, toothpaste, detergent, pots/pans, no foil, plastic , microwave. And the biggie. SUGAR AND ANYTHING PROCESSED. i used to have trigeminal neuralgia. GONE. my neurologist can believe it. Almost no symptoms because of a huge decrease in inflammation. Oh. Also do meditation and grounding. So sorry. I don’t have a doctor for you but the good news is this may buy you some time. If you are willing. It’s not easy. Happy thanksgiving and good luck
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Thanks for that info @wadams , & glad that you’ve found something to help, so did you never have surgery?
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No. No surgery and only slight occasional symptoms since changing diet and lifestyle
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I wish you the best. I know how debilitating it is. Let me know if you want help trying what i did
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Very amazing that your serious diet & lifestyle change has worked so well in reducing/eliminating your ES symptoms. It sounds like you’ve been very disciplined for many years, & the payoff has been significant!
Thanks for sharing your success story here. 
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I hope the member who originated this discussion received this email. It is great advice. I was responding to that person. I, too have done most of those things and it definitely helps inflammation.
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So just a little update. Dr. Hernandez’s office was trying to schedule surgery for tomorrow, however I had originally asked to do the right side first. He will only do one side at a time and I need both. My pain is worse on the right side but the jugular vein compression is worse on the left. I wanted to talk to Dr. Hernandez about it before I scheduled. I somehow missed his call and haven’t yet heard back from him. He made me go get an epidural injection to make sure all of this wasn’t coming from my neck, but when I followed up after he didn’t say much. I felt like the next two appointments were pointless. This last time I was an emotional mess from being in so much pain every day. I never get relief anymore. In the meantime, I finally got a call from Dr. Hackman’s office, and I am scheduled for my consult on June 25th and surgery on July 1st. I am praying I can tolerate all of this until then. I almost went to the ER tonight. My head has something weird going on with tons of nerve pain. The left side of my face feels weird like it’s swollen but it’s not actually swollen if that makes sense. My chest feels like the skin is being weighed down or something. I have an ultrasound on Thursday to check on the thoracic outlet. I have been waking up with my right hand swollen. I am also dealing with ongoing issues from May Thurner. I had the balloon dilation done because my stent was compressed but it seems to have made my leg pain worse and it’s now feeling numb. I can’t wait until this is all over with!
I’m really sorry for all that’s gone on (or not!) with Dr. Hernandez’s ofc. Things like that happen for a reason & it may be he wouldn’t have been the best doctor to help you in your current situation.
Since you have known IJV compression, have you considered seeing Dr. Costantino in NY? He specifically does surgeries for ES w/ IJV decompression. He would potentially be a better surgeon for you in your situation as Dr. Hackman doesn’t do anything to decompress the IJV if the styloidectomy alone doesn’t work. You could also potentially get an appointment sooner if you saw Dr. Costantino.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Does do online or phone consults we believe.
Regarding your current symptoms, have you ever been prescribed a blood thinner such as Brillinta, Plavix, or Xarelto? Some of our members have had good symptoms reduction when taking a blood thinner. It can take 3-4 weeks of taking one before symptoms reduce, but it is worth a try. I suspect your head pain is from intracranial hypertension being caused by your jugular vein compression. The internal jugulars drain deoxygenated blood from your brain as the internal carotids take freshly oxygenated blood into your brain. When the jugulars can’t drain as fast as the carotids put blood into the brain, a hight pressure situation occurs in your brain which can terrible head pain, eye symptoms, pulsatile tinnitus, & brain fog.
The feeling of chest pressure can be from your vagus nerve which also gets squashed along with your IJV up at the level of the styloid & C1.
I’m sorry I don’t know what help to offer for your May Thurner symptoms & am sorry your stent got compressed. Is there anyway to get the iliac artery off the iliac vein so it can open up?
I’ve sent a link to this post to @vcp02 as she’s done a lot of work toward informing doctors & patients about ES.
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