After 2+ years of seeing numerous doctors and specialists, this week I finally encountered someone who actually knows about ES, has preformed the surgery many times before (including on members on this site) and could speak with confidence about it. After asking me questions, he poked around painfully feeling my styloid process in the back of my throat. He is an ENT so he scoped me for the millionth time just to be sure and of course he found nothing else to explain my symptoms. I already had a CT scan done showing elongated styloid processes (3.7 and 3.8cm). So after he was all done he said, well you have Eagle’s Syndrome and I think surgery may help. So I’m on the wait list for surgery with him, likely some time in the next 3-6 months (wait times in Canada!)
We talked about the internal vs. external approaches and he’s done both, he’s a skull base surgeon who primarily does oncology (cancer) surgery so he’s pretty experienced all around from what I gather. He no longer preforms the external approach, he prefers the internal. He recognizes the pros/cons of each but ultimately he’s the expert and believes the inter-oral is the way to go so that’s what we’re going with. He said he avoids taking out the tonsil unless he has to and says he can get virtually all of the styloid out with this method, right up to the skull base in most cases.
At any rate, it’s a scary decision but ultimately I believe it is the only thing with a chance of permanently removing my pain. I’m on 600mg of Lyrica which is the max dose and taking advil/tylenol around the clock trying to keep it manageable. Long term it’s just not sustainable.
Hi from Newfoundland Canada,
My doctor is also on the Canadian list, and he too has done both internal and external, he is also a head and neck surgeon and we spoke of both ways to do surgery, and like your doctor, he too says he can do full removal intra-orally on both sides the same time on Nov 6th. I was lucky and didn’t have to go on a wait list. I had my first consult with him on Oct 10th, and he booked surgery while i was in the office. wishing you all the best and please keep us updated.
Deanne
That’s great news! And good for Canadian members to have a doctor to see! We’ll add him onto the doctors list! I really hope that it does help with your pain, & hope the wait’s not too long…thanks for the update.
Such excellent news for you @BFresh! I’m patiently waiting for my consult with Dr. O’Connell, I plan to get a private updated CT here shortly so I am prepared when my consult comes up. Good luck with your journey, relief is on the horizon!
BFresh knows this, but for everyone else…I had my right side intra oral with Dr O’Connell in September! Thrilled with my results and will do my left side soon !
Hi BFresh - This has certainly been a long haul for you. I’m so glad you’ve been officially diagnosed by someone who is also able to help you. It seems the best & most experienced surgeons on both the US & Other Countries ES Doctors lists are ENT cancer specialists who are also skull based surgeons. I see a pattern here!
I’ll be praying for your surgery to be scheduled closer to the 3 month end than the 6 month. Don’t know if you can request to get on a cancellation list but in the US getting onto one often bumps up the appointment date significantly.
It does seem more doctors are doing intraoral surgery using techniques that allow them to cut the styloid back to the skull base & even access the stylohyoid ligament if necessary. I think that’s fantastic!
