Let me start out by saying, I am complex.
I got 3 opinions: Annino, Costantino and lastly Hepworth. I do not have ES, but Vascular Outflow Obstruction. Annino does not deal with this and his recommendations would not have helped at all and surgery would not have been sufficient. I found that he did look further into my issues. I found Dr. Costantino to be adequate and closer to home but I hit the jackpot with Dr. Hepworth. He is everything and more that people say he is. Again, I understand this is an Eagle Syndrome group. He does deal with ES, but he also looks at other things and leaves no stone unturnted. He found swelling in my left jugular vein above styloid and to be small. My right jugular has more blood flowing through and both veins are oblong and abnormal and being compressed by the digastric muscle. Vagus nerve obviously is compressed. Left archnoid granulations have a diverticulum on cerebal spinal fluid containment membrane. Confluence of sinuses congestion on cerebellum/nervous system creating imperfect blood flow. My right collateral vein has constriction at base of skull obstructing flow and is compressed between C1 process - profoundly. My thyroid has shifted to the left side and is crowding into the omhyoid muscle and impinging on the jugular vein. He will do a partial or total thyroid removal. I also have a lingual thyroid. He is suspicious of nutcracker and/or MALS. He has ordered additional imaging for that and I also need to see Dr. Kyle Fargan in North Carolina before surgery. He also has me on anti coagulants. This one is not working so we will change it up. My only regret was not seeing him before Annino. It’s a lot but I am grateful to finally have answers…
I am so overjoyed that your have found some answers with Dr Hepworth!
He is truly a blessing to community
Although I was initially referred for vascular eagles, he found my right jugular was also contributing to my symptoms. He did a right ohmahyoid resection due to jugular vein compression as well as left styloidectomy . Very knowledgeable about blood flow and so happy with my surgery.
It’s funny how many names there are for all the variants of compression, I was told I have vascular ES as well as venous outflow obstruction on the left,
Maybe it more related to the spot of compression?
I am wishing you the very best on your journey, hope that the answers keep coming and you find resolution soon.
Wishing you the very best today and a pain free tomorrow
WOW! @Brandy!! What a crazy bunch of anatomical things you have going on. I’m glad you don’t have styloid issues to add to that mix. Dr. Hepworth is an outstanding doctor & surgeon. I met him awhile ago while w/ a friend who was seeing him. As we sat in the waiting room, we had a conversation w/ a gal who was wating for a post op follow-up. She also had very complex issues, & the surgery he’d done gave her life back to her. She was in tears w/ gratitude. I hope you have the same experience. 
Yes! Who would have thunk? Although, this is just the beginning, as I do have TOS and suspected Nutcracker/May Thurner Syndrome, at least I feel confident with people believing in me. I think there is also a genetic/environmental component to this. Possible connective tissue disease (although that was ruled out by many including genetic drs), I could be on the spectrum of eds and with my mold exposure, it triggered the worsening of the symptoms. It’s just mind boggling that it took this long and having been discounted by so many drs previously. I need to contact Huff post and start writing an Op Ed.
Thank you!! I wish I had gone to him sooner!!!
So pleased that you have some answers at least and that Dr Hepworth has a plan! Wishing you speedy testing and hope that the surgery is helpful, let us know when you go for the tests…hope you find an anti-coagulant to help too
Not a bad idea. Putting your story out there would definitely be a good way to inform people (especially doctors) who read Huffington Post that people’s symptoms need to be explored more deeply & not dismissed if the diagnosis isn’t clear/easy.
Dr. Hepworth is not accepting new appointments or patients currently and I’m not sure what to do next - does one have to travel to find a specialist surgeon?
Dr. Hepworth is my surgeon and last I knew, he was accepting new patients as they opened it up again. Most here have had to travel to find the best, qualified specialists.
It’s best to see someone with experience, especially if you’re looking at surgery. If you don’t mind waiting Dr Hepworth is an excellent surgeon & will likely open his list again at some point, it’s frustrating for you to have to travel when a great doctor is in your state , lots of members are travelling to see him! If you can’t wait, here’s a list of doctors familiar with ES:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Some doctors do telehealth appointments. so you could send scans and then have an appointment without having to travel.
Called yesterday and the guidance was to call back in August to see if they’re accepting new consults again. I will wait, I guess!
Thank you for the link! And agreed.
@Clarebear - You didn’t mention any symptoms that sound like you may have vascular compression. Since resolving IJV compression is Dr. Hepworth’s focus, you could see another surgeon who isn’t so specialized to help you. I didn’t have vascular compression as part of my ES symptoms so was able to see someone sooner for an initial consult & surgery. I was fortunate not to have to travel far, but many of our members have had to go quite a distance to see someone who is an experienced ES surgeon.
There are 3 doctors listed in Nebraska who have all done successful ES surgeries for members on this forum. I don’t know how experienced they are. Dr. Cognetti in Philadelphia is very experienced & Dr. Hackman in NC is also very experienced & does bilateral surgery in one surgery which some of our members have preferred. Dr. Cognetti does telehealth intiial consults, but Dr. Hackman does not so you’d have to go to NC to see him.
•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, Dr. William M. Lydiatt, MD - Omaha, NE - Head and Neck Surgical Oncology, Otolaryngology
•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
Here’s one thread where Dr. Daniel Lydiatt is mentioned:
You can search for others posts for all 3 doctors using the magnifying glass search tool in the upper right.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484
Thank you for the initial guidance. I have my first consult with a second neurologist at UC Health in Aurora this week. From all my reading, it sounds like I’ll need the imaging to have a diagnosis confirmed but I have so many of the symptoms - glossopharyngeal neuralgia, excess saliva, hypoglossal nerve spasm, foreign object sensation in throat, on and on. This has been three years and dozens of doctors to get me here. Really hoping I DO have it - would answer so much - and very grateful for this community here, a wealth of information.
I hope that your appt goes well, let us know how you get on