New here, symptoms since 2015

[Isaiah_40_31]

Welcome to our forum, @La0915! I’m so, so sorry to know how long you’ve been struggling undiagnosed & all that you’ve been through trying to get answers. Unfortunately, because ES has such diverse symptoms, many of our members have similar stories.

I applaud you for not giving up hope & continuing to search for answers. Mayo Clinic is a prestigious institution for many things medical but not for ES unfortunately. ES symptoms & treatment definitely need to be added to what they know & treat so doctors at all the Mayos across the US could be helpful for those who have it. We have several doctors in Nebraska on our Doctors List & any one of them could help you get a proper diagnosis -

•Dr Daniel Lydiatt, University of Nebraska Medical Center, Methodist Clinic . Clinic 402- 559- 1700, Office 402- 559- 7775, Methodist Clinic 402- 354- 5890 https://www.md.com/doctor/daniel-lydiatt-md
•Dr William Lydiatt, 8303 Dodge St., Omaha, NE, (402) 354-5244, https://providers.bestcare.org/provider/William+M.+Lydiatt/1494487
•Dr Coughlin, Methodist Hospital, Omaha (Head and Neck Oncologist, has done external skull base surgery 7-10 times, and steroid injections) https://www.mhsdoctors.com/physicians/11116003

Your symptoms sound like you may have vascular ES/compression of your internal jugular vein AKA Vascular Outflow Obstruction. Getting a CT scan w/ contrast will be your best initial diagnostic tool. If you notice your symptoms get worse when your head is in certain positions, then requesting your doctor order the scan to be done in those head positions (facing left/righ, up/down or on the diagonals) will help give a more accurate diagnosis. There are only a few doctors on our doctors list who do the surgery for that - Dr. Hepworth in Denver, Dr. Nakaji in Phoenix, & Dr. Costantino in New York.

@Jules has written a couple of very good posts about ES symtpoms which you could also print to take to your appt. tomorrow, though they are long but backed up by research.

ES Information: Common Symptoms And Possible Explanations For Them

ES Information: Common Symptoms And Possible Explanations For Their Causes: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used…

ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular

Eagle Syndrome Information: Background- Including Anatomy, Classic or Vascular?, Length Vs Angulation: Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and…

@La0915

I’ve cried for years hoping and praying for answers,

I hope you get the answers you need from this forum & your tears can turn to rejoicing. We’re here for you as you continue on your journey. I will pray that you find the best possible doctor(s) to diagnose & treat you.