Hello,
I was recently diagnosed with ES sometime in January, 2025 and also thyroid cancer. I live near the Boston Massachusetts area and will be meeting Dr. Annino on March 17 for a consultation. I would like to know if anyone has had both a styloidectomy and a thyroidectomy at the same time? What did the recovery entail?
Background; for years I have suffered intermittent episodes of vertigo. I also experienced dizziness if I turned my head to the left. About a year ago, I suffered a tooth infection to the #3 right upper molar, followed by a root canal and eventually tooth extraction. Afterwards I began to feel intermittent right inner ear pain, right jaw and neck pain. I was told I have TMJ. Had a fitted mouthguard made by the dentist which seemed to worsen my tooth pain. ENT suggested several other mouthguards to no avail. In addition I was experiencing external ear pain which lead to the discovery of a rare auto immune disorder called relapsing polychondritis. Seeing a specialist in Baltimore for that. Anyway I finally convinced a ENT nurse practitioner to order a head CT and a neck CT and that is how the ES and thyroid cancer was diagnosed. Styloid is compressing the internal jugular vein and sits on my C1 vertebrae on the left but most of my pain is on the right. This is probably why I can not hyperextend my neck without feeling dizzy. I cannot lie flat and typically sleep on a couple pillows.
I am so grateful for this blog. I am hoping someone can give me insight into having both surgeries done at the same time as well as feedback about Dr. Donald Annino in Boston.
Thank you so much!
I need to say up front, because you have vascular ES, you’ll get the best surgical results if you see one of the surgeons on our list who specifically do IJV decompressions along with styloidectomies. Unfortunately, Dr. Annino isn’t one of those doctors. Dr. Costantino in NY & Dr. Cognetti in PA are the two who are closest to you. As far as I know there are no US doctors who do bilateral vascular ES surgeries.
Dear Isaiah,
You are so valuable to those of us floundering on this forum! Thank you Isaiah for your feed back. I have a virtual visit with Dr. Cognetti on July 9th (earliest appt). Unfortunately the hospital does not accept my insurance. I will also check out Dr. Costantino in N.Y. So appreciative!
Best,
Lydia
So sorry that you have been diagnosed with thyroid cancer & ES at the same time; who are you seeing for the thyroid cancer, were you going to see Dr Annino for that as well?
This discussion was a while ago, & I think most of the members posting here aren’t active on the site any more, but it might be helpful:
Thyroid & Eagles - General - Living with Eagle
Also @adriene61 had thyroid & styloid removal with Dr Hackman in NC more recently:
Surgery with Dr Hackman Nov 8th - General - Living with Eagle
You’re doing the right thing sleeping propped up, that helped me alot when I had IJV compression.
@Isaiah_40_31 has given you good info about other doctors for vascular ES…
Best wishes 
@lydiah - I’ll add one more member who had a thryoidectomy & styloidectomy/IJV decompression, & that’s @Violin. Hers was done by Dr. Hepworth in May 2023. I think her second surgery for styloidectomy/IJV decompression was in Sept. 2023 i.e. one for each side.
Thank you Jules and Isaiah! I can’t express enough how all this information is so helpful. You are both so attentive.
Thanks again,
Lydia
We’re happy we have helped you, @lydiah. We’re here for your whole ES journey & beyond.
I was diagnosed with thyroid cancer at the same time as ES, eleven years ago. I asked the surgeon doing my thyroidectomy if she ever dealt with Eagles. She said she does not recommend doing both surgeries at once, but that it was good for her to know about the ES cause the positioning of my head needed to be revised compared to how she would normally do it for thyroidectomy. Lydiah, if you are unable to have both surgeries at once, you’ll want to tell your thyroid surgeon about ES and request special positioning. I’ll be praying for you!
Kathy
Thank you for replying, @WillisWay. I appreciate you coming back to give @lydiah this valuable information.
Thank you Kathy for sharing your experience. Did you go on to have your styloidectomy after your thyroidectomy? Where did you have your surgery?