Hi Nanners,
First off, I’m so sorry for what you’re going through. I can imagine how discouraged you must be. There have actually been several people who’s styloids have grown back w/in a couple of years of surgery. Usually this happens when the styloids have only been shortened, not removed back to the skull base though we do have one forum member (can’t remember who) who had hers removed at the skull base, & they still grew back. Currently, you could try privately emailing KCannady as she has begun having symptoms again after 3 or 4 years & has confirmed w/ a CT scan that there is new styloid growth. She is feeling the same way you are about this & her symptoms are similar as well. Using the magnifying glass icon in the upper right, you can search for other posts that discuss regrowth as well.
sjlash is referring to Ear_Mom’s son. Here’s a link to a discussion in which she participated. You can click on her screen name to privately email her if you want to ask her questions: SO scared and no docs help. She actually wrote a book which covers the details of her son’s ES journey. It’s called “Connecting the Dots” by Sheri Jonas & is available on Amazon. Here’s the link to it: https://www.amazon.com/s?k=Connecting+the+dots+by+Sherri+Jonas&ref=nb_sb_noss
Regarding doctors having lack of experience w/ ES, there are several on our doctors’ list who are very experienced w/ ES & ES surgery: Dr. Samji (San Jose, CA) & Dr. Milligan (Phoenix, AZ) have each done over 300 ES surgeries. Dr. Cognetti (Philadelphia, PA) has done close to that number & Dr. Newman who did Ear_Mom’s son’s surgeries is also experience but also in Philadelphia. I realize none of these doctors are near where you live, but many people have traveled long distances to see one of these more experienced ES doctors for surgery.
I’m glad you shared your current concerns & frustration with us. Please know we’re here for you no matter what. I’ll be praying that you have the fortitude to pursue getting yourself taken care of again.
