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Eagle Syndrome - Online Support Group

Doctors in nyc metro area

Does anyone know a doctor in the NYC metro area or on the east coast who specializes in this? Thank you

Hi. I have been seeing Dr. David Kutler at Weill Cornell (affiliated with Hospital for Special Surgery) on 70th Street and York Avenue. He diagnosed me, but I have not had surgery - still deciding, because I do not have as bad symptoms as many people here. I think he told me he has performed 15 or 20 of these over his career. The number is (646) ■■■■■■■■. At the very least, you should have a consultation. Let me know if you go. Good luck.

I just visited Dr Cognetti in Philadelphia. He is very thorough, extremely nice and seems to be trying to establish a practice by telecommunication for people lke me who have symptoms but do not live in Philadelphia. I am in DC. I too have not had the surgery yett. He wants me to try to eliminate symptoms and delay surgery until we are sure I need it. Hope this helps.

Birdy and slbdc, having had a number of surgerys that were not so successful for other things I am in no rush to get another but would love someone whyo would definitively diagnose and treat the pain. Thanks so much and good luck to both of you!

slbdc1 said:

Thanks so much, if the NY one doesn't work out, I will try him!I just visited Dr Cognetti in Philadelphia. He is very thorough, extremely nice and seems to be trying to establish a practice by telecommunication for people lke me who have symptoms but do not live in Philadelphia. I am in DC. I too have not had the surgery yett. He wants me to try to eliminate symptoms and delay surgery until we are sure I need it. Hope this helps.

Good luck to you as well!!!



april said:

Birdy and slbdc, having had a number of surgerys that were not so successful for other things I am in no rush to get another but would love someone whyo would definitively diagnose and treat the pain. Thanks so much and good luck to both of you!

slbdc1 said:

Thanks so much, if the NY one doesn't work out, I will try him!I just visited Dr Cognetti in Philadelphia. He is very thorough, extremely nice and seems to be trying to establish a practice by telecommunication for people lke me who have symptoms but do not live in Philadelphia. I am in DC. I too have not had the surgery yett. He wants me to try to eliminate symptoms and delay surgery until we are sure I need it. Hope this helps.

I highly recommend Dr. Bradley Simmons

360 Parrish Street, Canandaigua, NY 14424

Hi all- birdy, April, and everyone else, how did the dr diagnose you? I live in nj and have had an extremely difficult time getting a diagnosis or finding anyone at all that knows about ES. I’d LOVE your advice…thank you!!

Hi Kimmiesue, thanks for the referral but that is kind of far for me. Hi Julie, my ENT, who has known me a long time and is very good diagnosed me by just feeling my neck. But he won't treat it which is why I think I will first see Dr. Kutler. My ENT is Dr. Steve Sacks in Manhattan and while I would recommend him for diagnosing, I know he won't treat. I have lots of health issues including small fiber neuropathy, chronic pain, GI problems, scoliosis and on and on. I really appreciate everyones help here. None of my other doctors seem to have ever heard of eagles. I think you need to go to a really good ENT.

Best to everyone,

April

Hi there,

I actually went to quite a few doctors and had many tests, including a CT scan, a panoramic 3D view of my teeth and jaw (cannot remember the correct term for this test, sorry), as well as being manually examined by a specialist in Eagle's Syndrome, and ironically, because I do not have the "typical" symptoms (ie, pain upon palpation, etc) he said I did NOT have Eagle's. I will not recommend this doctor because I feel he was not thorough and a bit dismissive, frankly. None of these tests showed Eagle's. The test that determined it for me was actually a 3D MRI with contrast, which was ordered by the doctor I referred to above, Dr. Kutler. That showed that I had the elongated and calcified styloids, etc.

Hope this helps, and good luck!


Julie9536 said:

Hi all- birdy, April, and everyone else, how did the dr diagnose you? I live in nj and have had an extremely difficult time getting a diagnosis or finding anyone at all that knows about ES. I'd LOVE your advice...thank you!!

Hi Birdy,

So many doctors are dismissive and so many so called experts - well, I had a surgery by "the" expert at Sinai in 2006 on my esophagus and I have been unable to work ever since. So I will go see your doctor and I really thank you for the recommendation. My ENT is a great guy and a great doc but is afraid to treat me for Eagles since my medical history is so "complex", the doctor's words. I have had two sinus surgeries which he did which helped a lot but I also have something going on with my salivary glands...I will let you know after I see Dr. Kutler and Birdie I hope you feel much better, and so does everyone else 9on this board.. What I want is a pain doctor who will give me shots and control the pain but since none of them understands what eagles is, that will be another search! Thanks and stay warm.

http://en.wikipedia.org/wiki/The_Chiari_Institute This could be a good start. These docs are familiar with the skull. In reading the definition, it mentions Eagle Syndrome. I don't know where Great Neck New York is

Thanks Ivy, actually Great neck is a suburb of NYC. Thanks again and be well.

Guys I keep meaning to fix what I said about. I meant that I had a 3D CT scan (not 3D MRI). I did previously have an MRI in my search to find out what was wrong, but the MRI had not shown anything. Sorry for any confusion.



Birdy said:

Hi there,

I actually went to quite a few doctors and had many tests, including a CT scan, a panoramic 3D view of my teeth and jaw (cannot remember the correct term for this test, sorry), as well as being manually examined by a specialist in Eagle's Syndrome, and ironically, because I do not have the "typical" symptoms (ie, pain upon palpation, etc) he said I did NOT have Eagle's. I will not recommend this doctor because I feel he was not thorough and a bit dismissive, frankly. None of these tests showed Eagle's. The test that determined it for me was actually a 3D MRI with contrast, which was ordered by the doctor I referred to above, Dr. Kutler. That showed that I had the elongated and calcified styloids, etc.

Hope this helps, and good luck!


Julie9536 said:

Hi all- birdy, April, and everyone else, how did the dr diagnose you? I live in nj and have had an extremely difficult time getting a diagnosis or finding anyone at all that knows about ES. I'd LOVE your advice...thank you!!

Hello i have tons of symptoms above my neck, but i see you say you have small nerve neuropathy, is that correlated to the eagles syndrome cause i aswell am having tingling in extremities and have been told it could be small nerve neurapathy.

Hi Anthonyp8484,

It’s been 5 years since april posted last. I just want you to know that she may not reply as some people stop participating in the forum once they’ve had ES surgery.

Hi it’s April. I never actually got clinically diagnosed with eagles syndrome and maybe I should follow that up again. I had head and neck cancer in 2018 but please don’t be afraid you have it, it’s rare. I also have some kind of autoimmune thing that swells up my salivary glands. Also small fiber neuropathy. When we all get out of lockdown maybe I will pursue this again. In the meantime good luck and I empathize with everyone here who is in pain from whatever condition. Living with pain is just awful

April- sounds like you’ve had a difficult time, so sorry to read that. Thank you for taking the time to come back & reply…
If you have an AI condition it could be Sjogrens Syndrome- that causes dry eyes & affects the salivary glands, makes your mouth dry & can cause pain & salivary gland stones. It can cause neuropathy too. Ben’s Friends have a Sjogrens site too- you could have a look on there, it might be helpful.
If you do want to look into ES again when things get make to normal the latest doctors list (2019 one) has some new additions.
Best wishes to you, I hope that all the cancer has gone…

Thanks Jules. Yes it has been hard and now just getting through this virus thing in NYC is making things difficult for everyone. I wish everyone here the best and I may look into eagles again at some time in future. Be well

Hi april!

I second Jules comment. Thank you for replying. There is an excellent ES surgeon in NYC - Dr. Mark De Lacure (on the current US Dr. list) if you decide to pursue ES &/or find you have it.

Thanks Isaiah he was my cancer surgeon! I think I will talk to him about it as I was seeing him very often until the shutdown. My face is super painful but I don’t look deformed and apparently many people with the kind of cancer I had look deformed after surgery. I have been really pleased with NYU so far, they take everything very seriously and they are also kind. The radiation really did a number on me.

My bloodwork doesn’t show Sjogrens but they think it’s something like Sjogrens and ironically they prescribed me plaquenil which is what they are using for covid19. But I can’t tolerate it! That is a big problem. My rheumatologist is at HSS, I may get another opinion when this is over.

I wish everyone here better health, less pain and so much thanks for listening. And for your feedback as well.

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