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…
Let me start out by saying, I am complex.
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.