Hi everyone, I just wanted to introduce myself and say a big hello from Western Australia.
I started having symptoms back in 2018 and only received a diagnosis this year. Its been excruciating and I feel so alone with this issue. No one I know, even medical people, have even heard of eagles syndrome and considering its an invisible illness I find myself floundering with how to proceed.
This is a problem everywhere in medicine; IJVs have only recently begun to be studied.
I’ve been sick since I was 15 years old, now I’m 36, and only a year ago I figured it out on my own, but I’m still waiting for surgery, 2.5 months have passed and it hasn’t been done yet. Show your surgeons this video and this content, then they will understand.
@N_A big hello from across the pond
I am sorry to hear that you too are going through such a struggle with finding answers and dealing with what to do now.
I have found this site recently as well, and I am just so overjoyed with the helpful comments, direction and the stories shared.
I definitely felt alone in all this up till I found this forum.
Being able to relate with people going through very similar issues was so relieving, to see their successes and share in the struggle of finding the right doctors for an accurate diagnoses.
It has been difficult to keep looking for answers when dismissed by docs. At some point feeling like giving up all to often
My mystery symptoms were shared by so many here and I was all of a sudden not alone.
As you read more I hope that the path becomes clear as what to do next.
We’re in this together!
Stay strong and reach out when ever you need
I’m glad you’re here (but not glad you have an ES diagnosis). I expect you’ve seen our Doctors List by now & know there are some doctors in your country who are familiar w/ ES & have done helpful surgeries for some of our members who live there. You can research the doctors (based on patient opinion) by clicking on the magnifying glass icon in the upper right of this page & typing a given doctors name into the search box. A list of posts where that doctor is mentioned will come up for you to read.
Hello N_A my fellow sand groper! Greetings from sunny WA! So glad that you have a diagnosis, I’m still waiting for mine but symptoms very much line up with ES. Can I ask which ENT you are seeing in WA? And far out, how long are the wait lists!?
Hi there F_t, yep the waiting lists are horrific. I’ve heard that Dr Gliksman in Joondalup is the main WA doctor for eagles, but I’m not seeing him. I went to Western ENT Dr Shane Ling, but don’t really recommend him. Nothing bad, but a bit fobbed off in the beginning. Maybe try Dr Gliksman?! I rang them the other day and there’s no appointments until March next year, but still could be quicker than whatever you’re waiting for now.
How long have you had symptoms? Since 2018 for me - crazy!
Wow, looking for a diagnosis since 2018, that is seriously intense. I thought my few months waiting was bad! I really feel for you but glad you have a diagnosis and are looking into surgery.
I was originally waiting to see Dr Philip Fisher for a few months, but presented at my GP a few weeks ago with worsening symptoms, and she was concerned and called to put me on the cancellation list and I actually went today!
My symptoms are ear and neck pain, with CONSTANT clicking throat. Unable to eat or drink, it’s nastier than it sounds.
So Dr Fisher diagnosed me today with superior thyroid cornu rubbing against hyoid bone. I’m thinking that’s clicking larynx syndrome? So I’m on the wrong forum! He’s doing a CT scan to rule out calcification of stylohyoid ligament (Eagle syndrome) but was eager to diagnose and treat that if that were the case. As for me, I’ve been advised that the cause is benign, so hopefully my mind, body and muscles relax and hopefully the clicking resolves. If not, he can perform surgery.
If the need arises down the track, i will have to look into Dr Gilksman and Dr Ling also if I’m looking to have the surgery. Dr Fisher is a lovely man, wonderful beside manner. And a quick wit too!
Thank you for all your information, best of luck with your surgery, and please keep me updated!
Hello again! Wow, that’s great that you got in quickly on a cancellation, and were able to get a diagnosis. I think a diagnosis comes with some relief, even if its not a pleasant diagnosis, but now you know what you are working with at least. Good luck with the treatment and we’ll see you back I’m sure if it ends up being eagles take care.