Hi all,
When searching for a surgeon, skull base ENT otolaryngologist surgeons should be able to do this surgery in any location. They commonly remove tumors and work in oncology departments, so are difficult to get appointments with.
I have recently published research on Eagle’s syndrome. I had it, had surgeries, alleviated my symptoms and now continue to work on publishing research in this area. Feel free to look up my research or contact me for full article or if any questions.
Thank you for the information & link to your research paper. I started to read it & thought I’d reply here before finishing.
Who did your ES surgery i.e. was it someone from our US Doctors’ List or someone we can add? I also had two successful ES surgeries but know that not everyone fares so well.
Thank you for coming back to this forum in support of our members. It’s feels so good to give back.
I actually came across this abstract before the publication came out, it is FABULOUS thank you! I am a PT and immediately shared it with my staff and long time colleagues which was very helpful from a physical therapy clinical perspective. I will email you directly but wanted to say here thank you for all of the very hard work that went into this, it will be helpful in ways far beyond what you can imagine.
Hope you continue to recover and are able to further this work.
Be well!
That’s great that you’ve published an article to raise awareness! We have a section for research papers so have moved it into there. We do suggest that members see skull base surgeons/ otolaryngologists, &/or head & neck cancer surgeons if there’s no-one on the list.
Really glad that you found the site helpful- hope you’re getting on with your life now?
Dr. Cognetti performed both of my surgeries. I live in North Carolina, and have finally found a group of doctors at UNC who perform styloidectomies as well, in the Raleigh/Durham area. I’m glad you did so well with your surgeries!
Andrea
If the doctor’s you’ve found are Dr. Hackman & Dr. Patel, we do have them on our list and have been keeping Dr. Hackman very busy of late. I’m glad your surgery w/ Dr. Cognetti had such positive results!
Hi @Awest, I found your article a few weeks ago just googling about ES and I was incredibly impressed by it. So much information in one place. Thank you!
Would you mind if I asked a question about my situation?
When I had my ultrasound done the technician remarked that my bifurcation is very high and it is hard to get readings. Would this impact ES symptoms, and leave even less room for all the structures? I am currently waiting on my CTA results, but this has been bugging me ever since I had the ultrasound done and I haven’t really seen any info on this.
Only a guess, but the higher it is, presumably the closer it would be to the styloid & there could be compression in this area, which could cause dizziness, pain & possibly heart arrythmia.
That’s what I was thinking. Just had my CT and radiologis didn’t say anything but “carotids few millimeters from styloids”. No measurement. Waiting to get the CD to see for myself what is really going on. Is there a topic I can post my images in to get some feedback? I have some heart problems, mostly POTS-like and an arrhythmia when standing up. I have dizziness when looking down and or left and when tucking the chin in, and sometimes if I have to read something and am looking down for prolonged stretches of time I get so dizzy and sleepy I feel like I will just fall asleep right there and then. Lots of other symptoms too but will post more as I upload my images.
That does sound like vascular ES, the Vagus nerve can also be compressed & can cause arrhythmia…you can start a new discussion yourself & ask for any input if you upload your images. A few millimetres is nothing when you consider how everything would shift with your head in different positions, so explains how your symptoms vary with looking down etc.
@Rozmarincek to start a new topic, click on the butterfly icon (upper left) & that takes you to the home page. In the lower right of the home page is an icon - a blue circle w/ a + in it. Click on that icon & it takes you to where you can start a new topic/discussion.
I had an appointment with Dr. Patel in Portland OR, and while he took the time with me and looked over my CT Cone Beam showing both right and left elongate styloid, he was not think I needed surgery to remove them. My symptoms are severe headaches, pain in neck, chest pain, brain fog, loss of energy. I’m finding it to be difficult to find a surgeon to do this surgery. I would not recommend Dr. Patel if you are seeking a surgeon for ES.
Thank you for the information @wolfjohne22. I’m sorry you had a poor experience with Dr. Patel. Your symptoms sound like those that go along with vascular ES (compression of the internal jugular vein (IJV) or internal carotid artery (ICA). Many ES surgeons are not familiar with that aspect of ES & don’t look for it or won’t do surgery to treat it even if they see it.
I recommend you contact either Dr. Hepworth in Denver or Dr. Nakaji in Phoenix as both of them do vES surgeries. You’ll likely get farther with one of them.
