I was diagnosed with Eagle Syndrome today at the VA by an ENT. He also wants me to see an endocrinologist because he says that I have the amount of calcification he usually sees in 50 and 60 year old people. I am only 31. He advised me against surgery and said that he would not perform it. He told me that what he could do is temporarily insert a balloon in my Eustachian tube to stretch it out and while I’m under for that, he could press in the back of my throat to try to break my styloid bone loose. When he told me that, I knew I needed to get the hell out of there. I’m still in disbelief that he sees this as an option. At least now I know the VA is not going to help and I can focus my energy elsewhere.
Good instincts to run! I was in my early 40s and had a big ole calcified ligament. Was probably there a while.
He also told me that if the ligament is removed that everything could fall down.
Wow - that last comment actually got a laugh out of me & honestly there is nothing funny about this condition. Shame on him! At least you know not to let him touch you!
Yeah, you can’t make this stuff up! Oh, he’s definitely not touching me!
So crazy. The SH ligaments are not that important for goodness sakes.
Hi Sandb8791 -
Glad I warned you ahead about the general unhelpfulness of the VA. I’m so sorry. You who serve our country in the military deserve better. The ENT you saw is also mistaken about “the amount of calcification he usually sees in 50 & 60 yr old people”. He makes it sound like your condition is common once you “become of age”. We’ve had people from 12-70 or early 80s on here w/ full blown ES. Age makes no difference. That comment was as ridiculous as his saying removing the ligament would allow everything to fall down. The s-h ligament plays a small role in swallowing but not much else. As SewMomma noted - it’s not that important. Good job “getting outta Dodge”!
Your next decision is whether or not you want to travel to one of the more experienced ES doctors or see someone more local to you. In case you haven’t looked at it, here’s the link to the US ES Doctors’ List. Can’t remember if I named the more experienced doctors for you previously but just incase I didn’t, here ya go:
Dr. Cognetti & Dr. Newman both in Philadelphia, PA, Dr. Milligan in Phoenix, AZ & Dr. Samji in San Jose, CA. There are other excellent ENT skull-based surgeons on the list as well as some head & neck skull-based doctors who’ve done ES surgeries w/ good outcomes for our forum members.
So glad your short time on this forum has informed you well & set you off on the right foot to finding an informed & competent ES doctor.
Oh my! Just when we think we’ve heard it all with doctors! The breaking the styloid idea has come up before, why would any doctor believe that leaving a piece of bone floating about in the neck close to major blood vessels & cranial nerves would be helpful?! Could you imagine them doing that with an arm for example?!! Good move as fast as you can!
Once again, thank you for warning me about the VA. I guess I just didn’t expect the doctor to be as ridiculous as he was.
I live in Mississippi and would love to travel out to San Jose to see Dr. Samji, but I don’t think it is realistic for me at the moment. I checked out the doctors list and found Dr. Ness in Baton Rouge. I am going to contact his office very soon.
It’s nice not to have to travel too terribly much for appointments and surgery if possible.
Good choice, Sandb8791! I’m sure you’ll have a much better experience w/ Dr. Nuss!
Emma had surgery with him & found him to be a very knowledgeable doctor.
That’s great to hear! I am in the process of trying to get the VA to send a referral to him.
wow, I agree run away as fast as you can - incredible. Excellent insight on your part, you will do well.
I’m so excited! I just received a call from TriCare West that they approved my referral to see Dr. Nuss. I am extremely grateful and lucky that this seems to be going smoothly so far. Although I have been suffering with symptoms for almost 9 years now, I am the happiest I have been in a while because I finally have some kind of hope. Now it’s just a matter of waiting on them to schedule an appointment. I never thought I would be glad to have a diagnosis like this, but having it explains so much of what I have endured. The fact that I can label my pain has been a godsend. No longer can doctors tell me it’s my anxiety. My very first panic attack was triggered when I felt the right side of my face go numb and in that same week I lost the ability to swallow pills. Everything about what I’ve been experiencing makes complete sense now. In fact my anxiety has significantly decreased since I received my diagnosis. I’m just so happy!
I know exactly how you feel! A diagnosis and a doctor that will take you under his wing (Eagle pun intended) is worth celebrating. That’s where it all begins. You’re on your way!
(PS - I’ve had one panic attack in my life. It was last fall in the chair of a doctor that said surgery is not worth it and won’t help me. My husband said my lips turned white and I thought I was going to throw up. We go through so much with this. I think the ending will be that much sweeter for you given what you’ve been through)
Wonderful!!! It is so true how knowing what you are dealing with makes all of the difference. It gives validation for all of the pain and suffering, a path to move forward and increadible HOPE! I am so very happy for you. Hang in for the ride, you will do very well. Sending all good
Thank you! I love that I can come to this forum and find people who completely understand. It really is so comforting to know you’re not alone.
Thank you for all the positivity and good vibes! It really is amazing to have support from people who know exactly what I am dealing with.
Really pleased that you have funding in place! Hope you don’t have to wait too long…good news!