Hello!
I was wondering if anyone had a similar diagnosis? Dr. Annino is recommending surgery. I see Hepworth this summer for second opinion. I was told it is a “non traditional “ ES. Vascular variant. I would like anyone’s thoughts to help guide me. Thank you!
Hi Brandy,
We have many members who have vascular ES. Do you know if you have the jugular variant or the carotid variant? Jugular seems more common among our members. Dr. Annino is an excellent ES surgeon, but I don’t know how often he has operated on people who have vascular ES. That is Dr. Hepworth’s specialty.
If you’d like someone closer to you, Dr. Costantino in NYC also does surgery for vascular ES, & like Dr. Hepworth, he has a vascular surgeon who works along side him to help make sure the jugular vein opens up once the styloid is removed. The one difference is that Dr. Lo, Dr. Costantino’s associate, will shave a tiny bit off the C-1 vertebra if it is more of the cause of compression than the styloid. Dr. Hepworth’s vascular surgical assistant does not do that. There are pros & cons for both approaches so you’ll need to decide what seems best to you once you meet with the various doctors.
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I believe it is the jugular variant. I have compression bilaterally. Dr. Annino said it is the closeness in proximity to my C1 that is the issue. I do not have elongated styloids. I have read that about Dr. Annino not having enough experience with the vascular variant. Thanks for the heads up on the Dr. in NY.
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In theory if your styloids are compressing the jugular veins in between them & the C1 processes, then removing the styloid should make enough space, but it has occasionally not been enough & some members have maybe needed stenting of a C1 shave- so that’s something to prepare for and to ask which ever doctor you see about. (As @Isaiah_40_31 has mentioned)
I had bilateral compression too & surgery worked really well for me, I hope that you get on well with the doctors you see, let us know how you get on!
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I am so happy you are doing well!!! Who did your surgery?
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I’m UK, (so not very helpful to you!) & was lucky enough to have the most experienced surgeon that we know of do my surgery (Mr Axon, at Cambridge). Sadly he’s not able to do so many surgeries any more…
Very happy for you!
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