I’m from Long Island,NY & have just been diagnosed with eagles syndrome. I have started to call around to ENT offices but so many doctors have never even heard of eagles syndrome. Any help would be appreciated. Let me know if you were just treated & or had surgery. Thank you so much!!!
LI Girl:who diagnosed you? what types of testing have you had done in order to diagnose? I am being worked up myself.
Cat
PS: My Mom was born in Belllmore LI,my grandaunt 97 is still there, Beltagh Ave!
C
Check the list of Doctors on the website…I see Philadelphia and New Haven but no New York but I am sure there are others not listed there. Good luck…it takes time and patience to find the right Doctor. Hang in there!
Hi Cat…I was being worked up for TMJ & had a 3d cat scan done that showed bilateral elongated & partially calcified styloids. However, I only have symptoms on my left side. I’m from Suffolk county but I know where Bellmore is.
Hi dona...I'm also from Suffolk County. Thank you so much for the information on Dr. Marc Cohen. I had only just begun my search when i found this website. I'm going to call & make an appointment with him. I'm so glad you feel better after the surgery. Thanks for the info on the blood test too. I will look into that as well. As the months passed & I was trying to figure out what was wrong with me, I was also going through menopause & wonder if that was a trigger of some sort. I'm going to ask my GYN at my next visit. Just curious. Thank you so much for all the great info dona!
Thank you so much. I will check the list.
Happy1030 said:
Check the list of Doctors on the website....I see Philadelphia and New Haven but no New York but I am sure there are others not listed there. Good luck....it takes time and patience to find the right Doctor. Hang in there!
ligirl:
I'm so glad you found us! And I'm very grateful you have gathered the information you've needed from our members!!!!! We are all in this together and the more we can pool our resources and personal experiences, the more support we can offer each other. Pain shared is pain lessened and being able to relate to others, I believe, is key to healthy healing!
Please feel free to report any symptoms you're experiencing or any emotions (happy or sad) that you are going through during this process. We will be happy to share our experience freely with you :)
Welcome!!
Thank you AmyBlue! I’m so happy to have found this website. It makes this whole journey bearable knowing someone knows how you feel. In May it will be a year that my ear has felt blocked & I also have that feeling that something is stuck in my throat. There were times I would gag trying to cough up what I thought was stuck. I also have had many issues with my eyes (itchy, swollen,watery).I would say the first 6 months, after going to my GP, dentist, ENT,CAT scan, MRI, blood work were very depressing for me. The only time I felt better was when I went to bed at night,so the day couldn’t end quick enough for me. I would be on the internet everyday googling my symptoms but it always involved TMJ which is why I went to a TMJ dentist. He’s the one that sent me for the 3D cat scan but not because he suspected eagles, but to see if my condyle were in alignment with my orthotic. Now I’m not sure if I should continue the TMJ treatment because I think all my symptoms are related to the eagles & not the TMJ. He wants me to finish with him & if I’m not better, then see someone for the eagles. Of course he does, because I’m paying out of pocket for for the TMJ treatment & he doesn’t want to lose that. I haven’t noticed anything worth noting since I’ve had the orthotic ,which is almost 2 months. I have an appointment Wednesday which I think I’m going to cancel. Sorry to ramble on, but it’s been a long frustrating year & I’m so happy to have found this site. I hope we can all gain something from each other’s experience with eagles.
I had great relief from my TMJ treatment for 2 years before surgery. I still use my bite guard after, but I needed an adjustment after. However, not everyone gets relief. So it seems, if you can have the ES surgery soon, that waiting for the TMJ stuff may not be a bad idea. And my orthodic started relieving my pain after just a few days. I did wear it all day everyday for at least 6 weeks, could have been longer, I can't remember. If you are following orders and feel no relief, then your idea of cancelling for now is a sound one. Best wishes for some end to your pain soon.
Dona, thanks for the new recommendation. I will make sure to list Dr Cohen on the spreadsheet on next update.
Emma… Do you know if eagles can cause tmj?I know my bite was a bit off when I started the treatment but the only symptoms I had when I went for the tmj evaluation were the blocked ear & throat issue. I have a click but it feels like the click has something to do with my eagles. What were your tmj symptoms?
Dona I checked ALCAT becuae I'd never heard of it. I have heard some docs won't rely on certain lab tests or they "po-poo" tehir results (I've had this issue as does everyone else Via Lyme-tho I got treatment because mine were positive and ) If you are trying to find out about body's inflammation a good source would be a rheumy who'd be able to order blood/urine tests to determine that. Yes, some foods might cause inflammation, but there is plenty of info online, about doing elimination tests and that doesn't cost you a dime, without having to shell out $700 out of pocket. I had to pay for my Lyme testing, got some reimbursed, being on SSDIs I know how hard it is to pay OOP! I am going to address more in a separate post to LIgirl re this. Glad you were able to have the styloids removed, was it intra-oral or neck accessed? Do you have any other medical issues like Thyroid disease?
Cat
http://en.wikipedia.org/wiki/ALCAT_test
dona said:
I am from Suffolk County and I search our Island from end to end, either they never heard of Eagles or won't touch me. Then I found Marc A Cohen, Assistant Professor, Dept. of Otolaryngology-Head & Neck Surgery at New York Presbyterian Hospital 646-962-2286. WOW he was wonderful. I brought all my MRI's & X-Rays with me. to just speed things along. My surgery was a few months later. He had to remove my tonsils then pull out my styloids. My main issue was very BAD headaches and the styloids were so calcified I couldn't turn my head.
Though I fell better now that the styloids are out. I can not stress enough that taking the Alcat blood test is something you should do. It isn't covered by medical and runs about $700 but worth every penny. I took mine through Dr. W. Brent Reynolds L.I. Office Smithtown 631-265-1223 to determine what foods on a cellular level cause inflammation. I can give myself the same BAD headaches if I do not watch what I eat. It may very well be why my styloids became so calcified that they needed removing.
Good Luck to you
LIgirl: IF your eyes are an issue, please see an opthalmologist, they'd be able to tell if your issues are allergy related or something a bit more complicated (I Have Sjogren's, altho testing NEG for it as 40% do, my tear ducts do not make enough lipids,(fatty layer of our tears) meaning I can cry WATER only, I also have pancreatits making no enzymes, having a lot of autoimmune issues, as well as currently Thryoid cancer, anticipating that surgery soon.
Please ask your PCP to check thyroid Free T 3 & Free T 4 if you are having dryenss issues as well as the thyroid is the body's major gland telling all systems what to do, one good website is Mary Shomon on FB, a thryoid advocate, as docs just don't seem to want to spend the time, they do a "one size fits all medicine approach" and that can;t cut it with some . I also had TMJ, sometimes stress of health issues can lead to a tightened jaw, which seemed to be in my case, subsequently I lost all my teeth due to the Sjogren's, but I still have TMJ Issues even when not wearing dentures. RIght where the partotid gland is in front of ear is very tender 24/7
Please search this Eagle's site for all the posts I made on MRI contrast as well, it is staying in the bodies of those getting tested and without having had any Kidney Disease to begin with. (I am also being worked up for ths!) BCBS Must love hauling my file around! but i told them I WILL get to the bottom of all this. If they'd only allow those with Lyme to get treated with proper type and length of time til it's all gone, we would'nt wind up here IMO!
ligirl said:
Thank you AmyBlue! I'm so happy to have found this website. It makes this whole journey bearable knowing someone knows how you feel. In May it will be a year that my ear has felt blocked & I also have that feeling that something is stuck in my throat. There were times I would gag trying to cough up what I thought was stuck. I also have had many issues with my eyes (itchy, swollen,watery).I would say the first 6 months, after going to my GP, dentist, ENT,CAT scan, MRI, blood work were very depressing for me. The only time I felt better was when I went to bed at night,so the day couldn't end quick enough for me. I would be on the internet everyday googling my symptoms but it always involved TMJ which is why I went to a TMJ dentist. He's the one that sent me for the 3D cat scan but not because he suspected eagles, but to see if my condyle were in alignment with my orthotic. Now I'm not sure if I should continue the TMJ treatment because I think all my symptoms are related to the eagles & not the TMJ. He wants me to finish with him & if I'm not better, then see someone for the eagles. Of course he does, because I'm paying out of pocket for for the TMJ treatment & he doesn't want to lose that. I haven't noticed anything worth noting since I've had the orthotic ,which is almost 2 months. I have an appointment Wednesday which I think I'm going to cancel. Sorry to ramble on, but it's been a long frustrating year & I'm so happy to have found this site. I hope we can all gain something from each other's experience with eagles.
Ligirl, I posted above about thyroid instead of within this post of yours, but it applies becuae menopause does seem to trigger dry eye/vagina, etc. ask aroudn your female friends for names of someone willing to work with you re: hormone replacement if that is what you want to be on. I take yam based thyroid and also a progesteroine and estriol medication regimen, becuae the alternative, is based on animal products for thryoid (pig thyroid) and Premarin is "pregnant mare urine PRE-MAR-IN!" I've been in menopause since 2005 and THEN had a hysterectomy, long story there…but as I said ask around your women friends to find who tehy like to treat them, some docs are clueless in those fields!
Cat
ligirl said:
Hi dona...I'm also from Suffolk County. Thank you so much for the information on Dr. Marc Cohen. I had only just begun my search when i found this website. I'm going to call & make an appointment with him. I'm so glad you feel better after the surgery. Thanks for the info on the blood test too. I will look into that as well. As the months passed & I was trying to figure out what was wrong with me, I was also going through menopause & wonder if that was a trigger of some sort. I'm going to ask my GYN at my next visit. Just curious. Thank you so much for all the great info dona!
I had ct doen today shoing fluid in sinuses (very bad sinus infection) I feel I am not getting a "return" on circulation due to styloids (my old CT showed styloids elongated) but as I am awaiting suregry for T Cancer I will wait see what tests surgeon wants to do.
Cool @Bellmore! I'll have to go see her sometime soon!
Cat
ligirl said:
Hi Cat..I was being worked up for TMJ & had a 3d cat scan done that showed bilateral elongated & partially calcified styloids. However, I only have symptoms on my left side. I'm from Suffolk county but I know where Bellmore is.
I’m in the same boat, from long Island, looking for a Dr.
These are the doctors in NY on our Doctors List:
•Dr Yosef Krespi, Lenox Hill Hospital, Manhattan 212- 262- 2929 https://www.northwell.edu/find-care/find-a-doctor/otolaryngology/dr-yosef-krespi-md-11355020
•Dr Peter Costantino, Lenox Hill Hospital, Manhattan 212- 262- 2929
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
•Dr. Larry Lo, 850 Northern Bl, Floor 1, Great Neck, NY, (516) 773-7737, https://www.northwell.edu/find-care/find-a-doctor/neurosurgery/dr-sheng-fu-larry-lo-md-11511781 Operates w/ Dr. Costantino. DOES C-1 SHAVE for IJV compression.
•Dr Andrew Tassler, Otolaryngologist, New York City, has done a couple of intra-oral surgeries.
Yes I did see this list and have called, just looking for others in case. I’m am finding some don’t take my insurance, too busy, not taking new patients. Was also trying to get in touch with Delacure in Danbury with no phone number that works or he’s not with the practice. Though I did find his personal cell and left a message. Thank you for your response.
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