I started this whole adventure about 6 months ago. I was having pain in my neck, ears, and having trouble swallowing. I do have an Underactive Thyroid and Hashimoto’s Disease. I went to an Endocrinologist. I had ultra sounds and xrays done. She determined it wasn’t my thyroid and it wasn’t my Lap-Band slipping ( I had weight loss surgery ). So, she sent me to an ENT.
My ENT did a swallow test and a scope down my nose. NOTHING! He said “Don’t worry, we will figure this out.” I was feeling like I was going a little nuts. So, he ordered a CT Scan. I went for my follow up appointment. He comes right out into the waiting room. He was excited. He proceeds to tell me, once we go back to his office, what it was. He referred me to a Dr. in Ann Arbor, Mi. I go to that appointment on February 21st. I am glad to know I am not nuts. My ENT thinks they will remove it, because it is causing me swallowing issues. I am a little nervous. i just don’t know what to expect.
Hi neecee! It’s good that you’ve been diagnosed quite quickly, and don’t have to wait too long to see your doctor! There’s lots of info in the Newbies Guide section about surgery and what to expect, and lots of posts from members who’ve had the op and how they’ve found recovery- the past discussions are searchable, so it’s easy to find that info.
I don’t know if the doctor you’ve been referred to is an experienced ES surgeon or not? (There’s a doctors list in the Doctors Info section which you can look at to see if they’re mentioned) Quite often people feel more comfortable with a doctor who has done surgery before, as it can be a bit of a tricky op. But the best advice is to go with someone you feel comfortable with/ confident in, and make sure that they will remove as much of the styloid as possible- some doctors think it’s enough to just take a bit off, to make the styloid process more of a ‘normal’ length, but if it’s growing at an angle, then you can still get problems. SP’s can also occasionally regrow, so it’s best to take as much off as they safely can. And removing the piece which they take off is important too, as some doctors just break it into pieces, which could still cause problems.
You could ask too about whether the operation will be done intra-orally or externally. There’s pros and cons with both, it’s usually down to the doctor’s preference, but the recovery can be a bit longer with intra-oral as they take the tonsil out that side too, if you haven’t had it out already.
Some doctors like to try steroid/ lidocaine injections first to see if that helps- some members have found these helpful with the pain, but you can’t have them too often.
So the best advice is to read up and get informed, and get questions ready to take with you- hope that it goes well!
Welcome to this wonderful, supportive forum for Eagle Syndrome sufferers! I must say it’s a small world. I know where St. Ignace is!! My husband’s grandfather had a house on Brevort Lake for many years. I’ve been to St. Ignace to eat, grocery shop, & do laundry in the St. Ignace laundromat (30+ years ago). How exciting to learn that even in a tiny town there is a doctror who’s familiar with Eagle Syndrome!
I had a similar experience to yours in that my diagnosing doctor was an ENT & very thrilled to know I had ES. He had done several ES surgeries over the years, but the cases he saw were very far between. I didn’t end up having him do my surgery, but he was quick to diagnose me. I think diagnosing a “rare disease” accurately first try is exciting for any doctor!
I had external surgeries (1 for each styloid) with healing time in between. My surgeon’s approach is to remove the styloids where they attached to the skull. I also had problems with speech but am almost 100% now. My surgeries were in 11/14 & 8/15. Nerves can be slow to heal, but once the irritant is removed, our nerves do mostly get back to their formal full function.
Please ask questions here as they come up. There is a wealth of knowledge on this site.
Jules gave you great advice to get you started informing yourself.
I was diagnosed in August with Bilateral Eagles and just had my first surgery last week. Dr Samji was able to remove my whole bone and I am looking forward to my other side coming out in a few more months. Meanwhile, I have blogged my whole experience under the topic “Thank you Picture of Scans”. I don’t know if you will find it helpful to read. Otherwise, I found the Newbie Section to be very helpful to me [along with Jules & Isiaih-40-31]. I am happy to answer any questions you have.
Sorry for being a bit techy illiterate, but is your blog on this site? If so, which category is it under? I’d like to read it. Glad you’re doing so much better!
Thank you! I just read your blog post & realized I had read it when you first put it on this site. It was good to review from whence you came. I hope you are already seeing major improvement even after just one surgery. From what you’ve said, it sounds like things are definitely looking up!
