My ENT moved my appointment to see my ENT and neurologist today.
My ENT is Dr. Widick in Cocoa Beach at Atlantic ENT, and he quickly diagnosed me if anyone in the area needs a diagnosis. He is familiar with Eagles Syndrom. He said my case was “impressive,” he has done the surgery 5-6 times and offered to do intraoral surgery for me. He has not done surgery where the entire ligament was calcified like mine, and he said it was the thickest and most progressed case he has seen. My styloid on the right side is also almost reaching the hyoid. He seemed kind of excited to see such a severe case. When I asked him about my nerve pain, fainting, and visual symptoms and if he thought they would go away, he said it was a stretch. He didn’t seem to think doing any further tests was essential and said I could live with it if I chose to. Overall, I’m glad he found it, but in my case, I don’t think I’m comfortable with him as a surgeon. Especially since I believe there is a vascular component here, the group mentioned that the intraoral is not the best. Overall, if my case weren’t as severe, I would probably go with him, and I think he’s an excellent, knowledgeable doctor in the area.
I saw my neurologist as a follow-up to all the nerve issues I’ve been having and to see the results of the vEEG. My vEEG was clear, and I had no seizure activity. He had seen my CT scan, and he was very concerned. He said most of my nervous system issues probably come from Eagles Syndrome. He couldn’t confirm any vascular symptoms since that’s not his expertise, but he said anything is possible with the possibility of vagus nerve compression. He offered me a nerve pain medication, but I declined for now.
He’s referring me to the Jacksonville Mayo clinic for further testing. Does anyone have experience at the Jacksonville Mayo clinic? I’m hoping they will do a dynamic CT scan. Jacksonville is a few hours away, so I wonder if this is the best route. Is there something else I should be doing? I’m so lost, overwhelmed, and scared of having a stroke while waiting for more tests. Sorry, I’m usually positive, but I’m struggling a bit today. I knew I wouldn’t get answers today, but I wish the path were clearer.
@ectocake - I’m sorry today was hard for you. The search for answers seems never ending sometimes, & when delays or unexpected road blocks enter the picture, it’s easy to become discouraged. I am praying tomorrow you’ll feel better knowing your current doctors are doing their best to help you get the complete proper diagnosis so you can decide what your next step needs to be.
Your ES diagnosis story is almost exactly the same as mine was! I was referred to an ENT for a hard lump under my jaw that coincided w/ neck pain. The ENT immediately said, “I think you have Eagle Syndrome.” After some discussion about what that is, he referred me for a CT scan. When I returned a week later to get my results from him, he told me I had an impressive case of ES & it was bilateral!! I could see the excitement in his eyes & here it in his voice as he gave me the diagnosis. I will say, your styloids/calcified stylohyoid ligaments are much worse than mine were, but I guess mine were among the worse my ENT had seen. As in your case, he had only done a few styloidectomies & what he recommended for me was bilateral surgery w/ one night in the hospital post op. He planned to remove one styloid intraorally & the other transcervically - go figure. Thankfully, I found this forum and another much more experienced ES surgeon prior to having the first doctor do my surgery.
Regarding Mayo Clinics (there seems to be one in almost every state), the Mayo doctors seem to know little to nothing about ES w/ the possible exception of the Mayo in Phoenix. We’ve had many members start their ES diagnostic journeys at a Mayo Clinic, because of its name & reputation, only to be told ES is so rare, you dont’ have that, or your symptoms aren’t right for ES (even though a CT scan shows elongated styloids/calcified stylohyoid ligaments), & so on. Since you aren’t going for an ES diagnosis but for a vascular compression work-up, their knowledge of ES may be an insignificant issue.
Instead of hoping Mayo does dynamic testing, contact your neurologist & specifically request it. He can make his referral very specific i.e. Look for IJV, ICA/ECA compression being caused by elongated styloids/calcified stylohyoid ligaments & the testing needs to be dynamic. I think that’s a very good place for you to start.
You’ve made some good progress on this journey just by getting diagnosed w/ ES. Hopefully your next tests will determine what else is going on.
Sending you an encouraging hug .
I hope I can reassure you that having a stroke with ES is very, very rare, I know it’s hard to not worry though
I agree with @Isaiah_40_31 that for some reason Mayo clinics don’t treat ES, although on our doctors list there’s one doctor mentioned at the Jacksonville Mayo clinic- Dr. Phillip Pirgousis- I don’t know anything about him, so you could search the past discussions for any mentions…and you could ring them to see who you’ve been referred to and if they treat ES as well as asking about the testing as @Isaiah_40_31 suggests.
Here’s a link to the Doctors List so you could look into other Florida doctors otherwise:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Dr Rui Fernandes, University of Florida and Shands Hospital and Dr Jeffrey Scott Magnuson, Advent Health Medical Group Otolaryngology and Head & Neck Surgery at Celebration have certainly been mentioned a bit.
Getting diagnosed is a big part of the battle, so keep strong!
Thank you for your support and advice. I will call my neurologist’s office on Monday and talk to the nurse about the dynamic CT and if he’s willing to do that. When I asked if we could do additional testing, he mentioned the Mayo Clinic and referred me there, so I didn’t push. I know I have to practice flexing my self-advocacy muscles.
I’m sorry you had to go through a similar journey and I appreciate all your knowledge and encouragement.
I’m really glad @Jules brought up Dr. Pirgousis. I remember he got a great review from one of our members but I had forgotten he was at Mayo. Perhaps you can also request to see him when you call your neurologist’s ofc to discuss the testing you’d like to have.
Sometimes getting diagnosed w/ ES is the entertaining part of the journey because of the novelty of the diagnosis & the reaction of a doctor who’s actually excited to see a solid case of it.
Thanks for the reassurance, Jules! I hate to sound like I’m overthinking things, but I had a really scary fainting episode where I lost control of my left arm, my vision went black like usual, and I worried I had a stroke. My MRI shows white matter lesions consistent with stroke, migraines, or cerebrovascular ischemic disease. I know it’s highly unlikely, so I shouldn’t worry.
My neuro seemed to know someone there personally and texted them before referring me. When I call on Monday for additional tests like @Isaiah_40_31 recommended, I can ask specifically who I’m being referred to. Honestly, with the two doctor appointments back to back, it was a bit overwhelming.
I’ll do some searching in the group on the Florida doctors. I tried searching Jacksonville Mayo Clinic and didn’t find anything too encouraging on them.
I just saw a post from 2020 saying he’s not taking Eagle’s patients anymore. But maybe things have changed or he trained someone. Fingers crossed.
@ectocake - Oops! Sorry about that! Sadly doctors come & doctors go from our list. We leave the good ones on for awhile after we hear they’re no longer treating ES for the very reason you stated - we hope they’ll start doing ES surgeries again. Please let us know if you find someone who’s helpful for you at the Jacksonville Mayo. Great to know your neurosurgeon knows someone there that he’s referring you to.
Yes, leaving them on is understandable. When he performed the surgeries, it looked like people were happy with him. I trust my neuro, he said he thought my case would be something someone would be interested in writing a study on so he seemed hopeful. I’m sure he’ll continue to help me along the way if Mayo doesn’t work out.
So I called my neuro back yesterday about further testing, and he stated it was out of his scope for any further vascular testing and referred me back to my primary care to get referred to a cardiovascular specialist. At this point, do I catch up with my primary care and see where they direct me? I haven’t included my primary in any discussion since the diagnosis happened. Maybe my primary will send me for the appropriate tests?
I asked the nurse about a dynamic CT scan, and they came back after speaking with the neuro and said something about calcium analysis, acting like it was what I asked for. Am I wrong, or is it the same thing?
No, calcium analysis is not the same thing…not sure if your primary can order the testing, I’m UK, so different here, hopefully a US member can give you info. Otherwise it might be easier to get a referral to one of the Florida docs on the list?
Thanks, Jules. I’m seeing my primary care tomorrow. I’ll ask them to refer me for more testing or who they think I should see. My neuro seems to think I should see a cardiovascular specialist. I don’t know that being referred to another Florida doctor is any help because none of them do the transcervical surgery. My ENT has done the surgery 5-6 times and is familiar with Eagle, but I’m not comfortable with the transoral procedure, which is what he does.
I’m waiting to hear back from the Mayo Clinic before I find another ENT or doctor to do the surgery.
@ectocake - I suspect your neurologist wants to send you to a cardiologist because of your fainting spells. he may think that a cardiologist is the place to start in exploring that. When you have a symptom like that in conjunction w/ an ES diagnosis, there is greater concern that the styloids are causing vascular compression than that it’s heart related. I would continue to press for a dynamic CT scan w/ contrast & skip the cardiologist for the moment. Please let us know what happens w/ Mayo.
He sent me back to my primary care. My primary care is doing a sonogram of my neck to check for blockages and refused to do a dynamic CT. She did refer my to a cardiologist and suggested that I have POTs. She didn’t think that eagles would compress my arteries or veins of cause the fainting spells. I tried to explain how mine had grown and she looked at me like I was crazy. She hadn’t gotten the images yet or the report from either the neuro or the ENT. I’ll see her again in a few months for my annual so I can try to press again for a dynamic CT if the cardiologist doesn’t help me. My primary care also told me to go back to my ENT to ask for the dynamic CT so I can try there but he seems just giddy to cut me open.
It’s all very frustrating. Meanwhile I haven’t heard anything about Mayo, but I understand it’s only been a week. I’ll try calling my neuro again towards the end of next week if I don’t hear anything.
@ectocake - I think going back to the ENT to request the dynamic CT is worthwhile. You can tell him you’ve done more research about ES & know there can be a vascular compression problem when the head is in certain positions & you need the scan to either diagnose or deny that you have something like that happening. You can also read through the titles of the research papers (in our Research Papers section under the General category on the main page). Print out copies of any that relate to your symptoms & make copies to take w/ you (this would be good for you to give your PCP also). The more information you can provide to help your doctors understand there’s more to ES than elongated styloids, the better. Never take, “It’s so rare, you don’t have that” for an answer.
Thank you. I will look this weekend and call my ENT on Monday.
I also called Mayo for second opinion and they said they dont deal with it. I see Dr Misfud in Tampa if it helps. Associated with USF and TGH. He’s head & neck and was more than happy to diag Eagles.
Do you know if he’s performed many surgeries? It’s good to have more names for our list…is this the doctor who has agreed to do intra-oral surgery for you? I’ve suggested some info for you on your post about possible surgery.
Im getting to your other post after this one. Lots of good info on there, thank you.
This surgeon is the head of the board for the hospitals and says he has done many and uses a conservative approach. He says that I can go back to normal chewing, swallowing, eating like normal as soon as I wake up and driving a few days later. I asked if there were any groups for support (like this one) and he says he doesnt know because none of his eagles patients return after the surgery except for the follow up where theyre all fine and never need to come back. Sounds too good to be true…
Thanks for the input. I already have a diagnosis of Eagles through Dr. Widick at Atlantic ENT over here in Brevard County. He says he can do the surgery intraorally but has only done it 5-6 times, and I’m concerned with my symptoms that I may need someone a little more well-versed. I’m trying for additional testing before I do the surgery with him. I’d like someone a little more experienced, but there aren’t many options here in Florida.