Update: Surgery is happening!

Hi all! I just had my consultation yesterday with Dr. John Del Gaudio at Emory Hospital in Atlanta. They were all very nice and extremely knowledgeable about everything. Surgery date will be set in 2-3 weeks. At this point he plans to remove as much styloid as possible on the left. Since mine is very high up he said it should go smoothly. When I go back for pre op, they will do a 3d scan to see where everything lies and if my ligament is calcified and if so, they will remove it too. First they want a cardiac clearance on my heart since I was having arrhythmias for a while. Then on to surgery. The plan for now is internal since mine is so high. He did feel the bone in my throat through my mouth and he also moved my hyoid bone back and forth and when it clicked back in place it felt like a spear through to the back of my head. He did say he thought the pain in the back of my neck and skull was not related to ES, but once that was the pain after moving my hyoid bone he said maybe surgery actually would relieve that too. I have only had a cervical xray and saw the bone that goes down past my jaw so I’m curious to know how long it is, if my left ligament is calcified too, & how my right side looks at all. I’m looking forward to the ct scan for sure. Surgery not so much haha. But I know the end result is so worth it. I would like to thank the creator of this site. I would like to thank the creator of the list. I would like to thank all of you for listening and encouragement even though I just joined not to long ago. Without you, I wouldn’t have found the second surgeon. Any input on post surgery expectations is very welcome! Sorry so long and thank you again.

Heather, so glad you're making progress toward your cure - and may it be that - a cure. I also started the wheels in motion for my surgery today. It'll be mid Nov. - early Dec. I will be glad to be done w/ the pain I have. Though it's not debilitating, it's annoying & getting a bit worse each day.

Isaiah 40:31

Ben and Emma, I hope you are watching, as Heather just gave you a really nice thank-you. :)

Heather, I am so glad the site could help you, and I wish you the best for your upcoming surgery.

Thank you, dancermom! Surgery is set for November 3rd. Next Tuesday I will have the cardiac clearance and 3d ct scan. Emory has been amazing so far. They are extremely efficient. No running around and scheduling things myself, they are taking care of all of it and scheduling so that it’s easier for me since they know I’m traveling from out of state. Isaiah, I wish you luck with your surgery as well! Please keep us updated as I will as well. My symptoms have gotten worse daily too and even though surgery scares me, in the end will be so worth it. Julie Watson, mine started about 6 months ago. At first it only happened a few times a day. Then a while later they increased greatly. I wouldn’t have them in the morning or midday but in the afternoons and then they would increase at night. 3 weeks ago my husband took me to the er because they were so bad. The er saw it was beating early, gave me pain meds (??), told me to not drink my one cup of coffee in the morning, gave me a beta blocker, & sent me home. No one there had heard of eagle’s nor would they check my carotid artery. For whatever reason, after the beta blocker they have almost stopped completely. I didn’t give up my coffee or do anything different. The ent that’s doing my surgery doesn’t think they are related to es either. I don’t know :confused: I do have the heart tests Tuesday and then a 3d scan so maybe will find out if they could be related.

Hope your surgery goes well. I’m having mine on Nov 3rd as well

Wow! Where will your surgery be if you don’t mind me asking? And what procedure?

Having it done in Colorado springs Colorado. External surgery for es. On the left side.

Mine will be internal on the left side(for now until I get the 3d ct scan.) I read your other post - I can’t turn my head to the left either - very frustrating!


Best luck to all of you! I will try to remember your surgery dates and check back with you.

Thanks Emma! Aren’t you the one that has kept up with the list? I can’t thank you enough. I wouldn’t have found my surgeon out of state without that list and would have let an inexperienced ent operate on me instead. Because of that list I got a 2nd opinion. Thank you so much!