I was first diagnosed and had my first surgery 20 years ago. Doctor said it was bought on by my car accident which I had blunt force head trauma. I was just operated on in August of 2018 for the second time and in January did another scan bones have grown back. Going to see my surgeon this morning where he already told me he might have to go the base on where the bone growth originated and slice from there. Has anyone else had multiple surgeries
There have been a few members who have had to have surgery again because of regrowth. It’s less likely if the styloids are taken back to the skull base. From August that’s pretty quick to have regrown, I’d count that as unlucky! Is it one side or have you had to have both sides done?
Are you confident that your doctor is experienced enough to remove the styloid back to skull base? We do have a list of doctors familiar with ES in the Doctors Info section if you want to see anyone else.
I do feel for you, & hope that the next surgery is the last one you need!
Both sides have to be done.
I second Jules sentiments and am so sorry you’re having to deal w/ bilateral surgery twice. Based on what you said your surgeon said about removing the styloids at the skull base, I’m wondering why he didn’t do that in the first place. If you’re seeing the same surgeon you saw 20 years ago, it is possible he’s changed his ES surgical strategy in that time & has learned, as have other surgeons we list on our ES Doctors’ List on this forum, that removing the styloids at the skull base does give the best long-term results & drastically reduces the possibility of regrowth.
Will your surgeon do external surgery or intraoral? Both sides at once or require 2 separate surgeries?
Whatever the case, I also hope your next surgical round is your last!