As we all have repeatedly mentioned on here, a lot of us had to end up self diagnosing ourselves with Eagles. I still have not been diagnosed, but am actively looking for an ENT that will listen and not just tell me I have GERD and TMJ. They tell me the GERD causes the pain in my throat and the TMJ causes my neck and facial pain. I know this is nerve pain! They don't even really address my palatal myoclonus because they have no answers for me.
My question is after you all went from doctor to doctor, what do you think actually convinced them that you had Eagles? I try to be careful not to self diagnose to them as I have found many have egos and don't want to be told by the patient what is wrong. I also don't want to share too many symptoms as they just think I am crazy. Does anyone have any advice on how you approached a new doctor in hopes they listen to you? Maybe it is just pure luck, I don't know. The last ENT just said I had GERD and I asked for a referral to a doctor anywhere in MN that has experience with Eagles and she said no one does the surgery because it is unsuccessful and doesn't really believe Eagles is a real syndrome. This was someone at the University of MN! I am losing hope and need to find a doctor to listen! It looks like I am going to have to travel outside the state.
Hi Christian22, yes, most of us have been right where you are. I think you are definitely going to have to travel out-of-state. If you go to one of the experienced doctors on the list, you may not need to say much to convince them.
When I went to my local ENT, he did just what your doctors are doing and told me I had reflux. I eventually went back and told him that somone told me I might have Eagles. I didn't tell him I self-diagnosed. Then I said that they told me I need a CT scan with contrast to see it. After the CT scan, he told me I had Eagles. So you might have to tell them that someone else suggested you might have Eagles. Don't go back to the doctor who didn't believe Eagles is real.
However, I want to stress that in hindsight I wish I hadn't persisted with him. He never had seen Eagles before but assured me that he's done lots of surgeries in the neck and was confident he could do a good job. He did an intraoral surgery on me and just broke the tip off. As it turned out, that wasn't enough and now I've spent the last three years trying to get more of that styloid taken out.
My suggestion is to not worry about the local docs that haven't seen Eagles. Go to someone experienced in Eagles if at all possible. And get as much of the styloid taken out as possible. Doing that would have saved me several years of misery and expense and frustration. Also, I want to add that the surgeries are almost always successful. Maybe not 100%, but I would estimate at least around 90% reduction in pain from what I've read over the last several years. The more of the styloid you get taken out, the better the results, from what I've read and experienced.
I also think you're right in not talking about all your symptoms and having them think you're crazy. This may be controversial advice, but I think if you have symptoms other than "normal" Eagles, it's best not to disclose them because it really does scare doctors away. (I know this from personal experience.) After the surgery is over and the weird symptoms have been resolved, then tell the doctor what symptoms the surgery cured.
Very good advice heidemt! Thanks for sharing. Good luck Christian22. I hope you find a doctor who is experienced in ES. I was checking for a MN doctor, now I don't need to look there. I'm from rural NW WI and feel isolated. I also have several personal experiences talking about too many symptoms and getting a deer in the headlights type reaction. I wonder what they put in my chart.
Marie, be sure to very copies of anything you have had done - x rays, scans, etc - as the patient, it’s your right to have those copies too. I had a local ent agree to do the surgery even though he hadn’t done it in a long time and based on our conversation he was going to take off the tip. I wasn’t comfortable with his experience and got a 2nd opinion. The surgeon that’s qualified is doing surgery November 3rd. I had the radiologist send the results to them but I went by and got the images myself to take to the appointment. Honestly, if I had just told them my personal symptoms and they went by the radiologist report, I probably would have been turned away. They saw my xray, felt the bone in my throat, & moved my hyoid bone to see what the pain was. Turns out I do need surgery and am very glad I was proactive and didn’t say yes to first surgeon. When I called and cancelled with the inexperienced surgeon, his assistant almost sounded relieved.