No- hers is very small and not doing anything yet as far as pain. I am not sure how fast hers will grow, but we were told by the orthodontist to monitor it every five years or so. We have not gotten in to the ENT yet since we just discovered this. Here is her panoramic xray:
I find it interesting that there is clearly a genetic component. I don’t know if there is some doctor out there writing and researching about eagles, but if anyone knows of a doc who would be interested in the possibility of a genetic connection, please let me know- I would of course be willing to talk with them.
I hope you find a good doctor who will be more helpful to you. I had a pretty easy road compared to some of the stories I have read on here. Hopefully yours will be better soon.
That is the problem with some Radiologists, if they see something as a "normal variant " or “incidental finding” they simply don’t report it.This has ,possibly , paid a great disservice to potentially thousands of patients who are walking around unaware that they have the calcification and subsequently suffer the myriad of symptoms of ES without any clue of the cause and don’t know where to turn to seek help.
In the UK we have the Daily Mail newspaper and a few years ago ran a patient story which was along the lines of “150 visits to the G.P. then man Googles his own symptoms and finds the diagnosis of ES”.
Even then he had to do his own research to find the appropriate Consultant, even then he had to pay as a private patient (?? free NHS) to eventually have the operation and return to a healthy life.
There is an irony here, in that, free NHS in UK, everybody pays in the USA yet in both systems Money talks !! Our Consultant gets paid directly into his pocket when he sees a private patient. Your Consultant operates within the boundaries of insurance companies unless, I guess, you have a couple of million dollars backing you. I guess you would soon get the surgery you need and deserve. Healthcare, anywhere, still cares about patients but is rife with greed.
Very interesting article. It is a shame that more docs don’t know about this. I am telling every doctor and dentist I see. I am also spreading the word amongst friends so that anyone they may know with symptoms might pursue Eagles as a possibility.
Hello Pam, just wanted to update you. New symptoms keep creeping up on me, so I saw my primary doctor and she had ordered an MRI of my neck. Symptoms of tingling of my tongue and roof of my mouth, ringing in my ears are getting worse. Long story short, my MRI shows a lot of cervical problems so I have a neurosurgery consult in June. Not sure if my symptoms are related to crevice problems or my ES. I guess time will tell. I’ll keep you informed after my appointment. I pray that I can get somewhere with this visit.
I will definitely be praying for wisdom for the doctors and for a good resolution of this for you. It could be a combination of both ES and the cervical issues. The docs really will need to have a lot of good info to make their decisions. Hopefully the MRI will give them a really good picture of what is going on. I will be praying for alleviation of your symptoms most of all!!
I wanted to correct the number of surgeries I said above that were done by Dr. Sale- I spoke with him yesterday and it sounds like they have done about 1-5 surgeries per year for the past few years. So… much more than ten. I must have misunderstood the time frame. Anyway- Happy thanksgiving everyone!
Good information @pamdva . Very glad you are alright now. Reading the above messages just reduced my anxiety because I too am having the symptoms you mentioned above. This site has really been very helpful. Thanks everyone.
Thank you for sharing both sides. I have a doctor appointment lined up with someone at the University of Iowa but not sure if they have experience or not with ES. I was debating trying to get down to KC sooner if possible but will probably see what the UIHC doc says as well. Seems like every case is different and someone may only have experience because at some point in time they said they were willing to take on the challenge. Are you in KC or have you had luck with any doctors around the Midwest? I am in Iowa. Thanks!
Hi gra1. Im in Ireland and getting nowhere publicly. Maybe its roughly the same privately between here and UK but do you know how much this surgery would cost privately?
The cost of the surgery in the US varies by doctor. Some doctors give discounts for “cash” paying patients i.e. those who don’t have medical insurance but others don’t. In the US, the cost for an external ES surgery is $20,000-$30,000. With a discount it’s probably a bit over half those amounts. The fee includes the cost of the surgeon, surgery center, & anesthesiologist. It’s not an inexpensive surgery.
Do you have any idea why his name has “mixed results” next to it in the surgeon list? I haven’t been able to find any stories on the site that were a negative experience.
Huh- no I don’t. I know there was one woman who drove up from Springfield to have surgery with him and it went well. And I have not heard anything negative.
