Dr. Widick diagnosed me at Atlantic ENT in Cocoa Beach, FL, and is willing to do the surgery intraorally. He says he has done the surgery 5-6 times. I would imagine for someone with a simple case, he’s a good option. He at least seemed knowledgeable about the Eagles and willing to help. I’d say he’s a good one to add to the list.
2 Likes
I hope you have luck with him, im thinking of taking a drive to orlando to see Haughey or Magnuson, going to call over there today. Id rather have someone whos done this 50x so I hear what youre saying. Did your doctor state any recovery time? Mine quoted what I feel is unrealistic, 2-4 weeks fully back to normal.
2 Likes
This doctor in Fl has done quite a few surgeries; is he anywhere near you?
Rui P. Fernandes, M.D., D.M.D., FACS, FRCS » Oral and Maxillofacial Surgery » College of Medicine – Jacksonville | College of Medicine – Jacksonville | University of Florida (ufl.edu)
2 Likes
Thanks for the info, I’ve added him to the list as a doctor who can diagnose ES.
1 Like
I think hes closer to you lol. 4 hour drive north for me.
It is worth travelling if you have to though, alot of our members have flown across the US!
2 Likes
Dr Magnuson is only 2 hours, so Im trying with him.
2 Likes
My doctor said two weeks. He also said other than my throat and ear pain all my other symptoms would not be fixed. Do you have vascular eagles? My stylohyoid is completely connected on one side and almost completely connected on the other. I don’t think intraoral surgery is the way to go for me.
2 Likes
He’s not too far, but I don’t see him in my insurance network. I can call tomorrow. My insurance has a program called ‘My Medical Ally,’ they reached out because they saw the Eagle’s diagnosis, and they’re helping me navigate the system. They recommended Dr. Cognetti in Philadelphia, which is quite a ways away. But I will travel if I need to.
2 Likes
I’m not sure why he said the other issues would not be fixed. Maybe a typo? No, I don’t think mine is vascular. No one seems worried but me. I can’t believe that your healthcare reached out to you, that’s amazing! I have FL blue w a high deductible. It’s a PPO so everyone is available as long as I pay for it lol.
2 Likes
I believe mine is vascular, and I will need external surgery. I’m still fighting through to get the proper tests to confirm. My ENT has only done 5-6 eagle surgeries and doesn’t seem well versed; my neurologist seemed to think a lot/all of my symptoms were related to Eagle.
2 Likes
I would definitely like someone to work on me who has done it more than 6x. I’m not sure who you’re fighting w to get your scans done, especially since you have a diagnosis. Why isn’t your ENT writing you for a CT?
1 Like
According to folks in the group and My Medical Ally, I have the symptoms and physical presentation of vascular Eagles. @Isaiah_40_31 recommended a dynamic CT scan to determine how the calcification compresses my carotid and jugular. My stylohyoid ligament is completely calcified on the left, thickened, and almost wholly calcified on the right side.
My ENT doesn’t think that my fainting is related or that there is anything vascularly, so he doesn’t want to send me for a dynamic CT scan. He sent me for a CT scan, which discovered the Eagles and diagnosed it, but he has been unwilling to send me for further testing and wants to remove a small part of my stylohyoid process. Again, 5-6 cases are all he has treated surgically.
My neurologist doesn’t think it’s his scope to send me for a dynamic CT scan and referred me back to my primary care.
My primary care thinks I have POTs, not Eagle, causing the fainting, and that’s what my vascular symptoms are from. She’s referred me to a cardiologist and has refused to send me for a dynamic CT scan. She did refer me for a sonogram of the arteries in my neck, though.
So now I’m waiting to see the cardiologist and figuring out where to go for a more knowledgeable ENT. Hopefully, one or the other will do a dynamic CT scan.
1 Like
I continue to be flabbergasted by the run around you’re getting @ectocake! That’s beyond ridiculous. I understand doctors being a bit dubious about their patients’ knowledge of their given illness, but when it’s something more rare & there are so many available research papers which qualify your need for a dynamic CT scan, I feel there’s no excuse for what you’re going through. Maybe perusing our Research Papers link & finding one or two that have symptoms discussions which match your symptoms to print & take w/ you would help. Otherwise, asking your doctors to Google ICA compression &/or IJV compression caused by ES will bring up at least some research articles.
2 Likes
Thanks, @Isaiah_40_31. I’ve been lucky that Cigna (my health plan) has a program called ‘My Medical Ally,’ providing a team of researchers and an RN working with me weekly to check-in. This group is recommended on their documentation, too! I was planning on posting about the program and the documentation they’ve given me when I get a chance in case it’s available to anyone else.
Between here and there, I can have a bunch of research papers. One I read through of theirs says that there are two types of Eagles: one that is caused by a tonsillectomy and one that is vascular. It seems not many doctors are familiar with the vascular type. The vascular type says it causes dizziness and other symptoms, so if I return to my local ENT, I will bring him that.
One of the things My Medical Ally does is tell you the statistics of the doctor’s surgery for Eagles. How many they’ve done, what is their success rate, etc. So I asked them to review Dr. Rui Fernandes so I can compare notes to Dr. Cognetti and weigh my options.
2 Likes
I am also disgusted at the run around youre getting. It takes nothing for them to write you a script to get a scan, Im not sure why they wouldnt do that. If you can get referred to a surgeon for a visit, he will prb write you for radiology. This is something the patient wants, its non invasive, there are no risks in scanning, so why not scan! Im truly sorry youre going through this. On the flip side, I wish i still had cigna, have they offered any guidance on getting that scan done? Can you ask them stats on Dr Misfud for me, that would be a great help as hes the guys who wants to cut me in the first place. Wishing you all the luck!
1 Like
@ectocake - It’s interesting that the research paper you found defined non-vascular ES as “the type caused by tonsillectomy,” That’s pretty old school thought at this point as that’s what Dr. Eagle himself proposed as the cause of ES. We have a rather large number of members who haven’t had tonsillectomies. We agree here that tonsillectomy can be one cause of ES, but there are a number of other possible causes ie head/neck injury, contact sports (think heading a ball repetitively in soccer), genetic predisposition, hormone imbalance (parathyroid related), having braces to straighten teeth, to name a few.
I expect the tonsillectomy delineation isn’t as important as the fact the article recognizes two very different forms of ES as long as the vascular version is noted to be caused by compression of the ICA &/or the IJV & not just one or the other. Vascular ES was originally only considered to be caused by ICA compression. Acknowledgement of IJV compression seemed to follow a little later (my opinion - which could be incorrect).
2 Likes
@Isaiah_40_31, thanks for clarifying. Maybe I’m reading it wrong or misinterpreting the wording, or it’s outdated information. But I agree that it’s important that it at least differentiates between the two. Here are the documents My Medical Ally supplied me:
Your Otolaryngologist Request - September 20, 2023 (1).pdf (339.8 KB)
Questions to Ask Your Doctor - Eagle Syndrome.pdf (109.6 KB)
It takes them a few days to research a doctor, so I can update everyone if anyone is interested in Dr. Fernandes.
I went for a sonogram of my arteries today, which are not calcified. So that’s good. The sonographer could see my stylohyoid ligament cutting across on the sonogram but couldn’t capture any interference from it on my arteries. She said she didn’t know if they even did dynamic CT scans at that imaging place.
I have an appointment with a cardiologist in mid-October. I will call my ENT again to see if I can talk them into a dynamic CT scan.
2 Likes
I will call and talk to the nurse at my local ENT today, ask again, and offer to supply some research on vascular Eagle syndrome. Wish me luck!
I asked for info on Misfud and Magnuson. Orlando is pretty close to me, and I noticed them in your earlier replies. It takes them a couple of days to pull the research data.
The company is called My Medical Ally. I’m lucky, my husband works for Cigna, so he usually hears about a lot of these programs. Cigna is advanced with its data management and utilizes it for these kinds of services to help its members. But I would check ith your employer or Florida Blue and see if they have something similar.
2 Likes
I hope you have some luck today. Misfud is in Tampa, i was just wondering if you had heard any good or bad about him as hes the guy who diagnosed and wants to do the intraoral on me. I used to have Cigna and loved it, then i lost my job because of ES pain and have crappy FL Blue. They dont have anything, not even competent customer service.
2 Likes