I am new to the forum. Thank you for accepting me. I’ve read several of your topics and will delve into more of your information tomorrow. I read that some of the doctors listed will actually look over your CT/MRI’s if they are sent to them. I’m wondering the best way to go about this. Do you send them a CD? Or can you send thru email? Do I send to more than 1? From what I read I thought I’d start with Dr. Snydermann, Dr. Confetti & Dr. Hussein. Is there a cost I should know about? I’m willing to pay what I have to because I’m feeling pretty desperate. I do believe from every thing I’ve read I’ve got vascular ES. Definitely have some type of compression happening on the right side of my neck. Thank you for any advice you can give me.
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We’re wondering the same thing. We’re near Philly, so my daughter & I are both planning to see Dr. Cognetti, since he is so highly recommended here on the forum. We were both diagnosed by our dentist after 360° x-rays @ Smile Exchange. We highly recommend them.
I have called Dr. Cognetti’s office, and they confirmed that all records, tests should be sent to him via postal service with tracking #. Then he’ll review & get in touch.
Problem is, I’m sure he needs an MRI or CT along with my other medical history. I haven’t been able to find out specifically what these tests are. Im no stranger to MRIs, CTs, etc, particularly of the brain recently because I had what we thought was a TIA. I mentioned ES to the Senior Radiology Tech at my most recent MRI, and she never heard of it. My neurologist is impressed that the dentist found this, but doesn’t know what to order, because a brain MRI is up too high to catch ES. Most offices these days, I’m able to fill out new patient information paperwork online, or have them mailed to me, but I haven’t been able to find a website for Dr. Cognetti. I was able to Google him & get general contact information, just phone #, and a biography with credentials. Anyone have a more specific way to contact his office, or any suggestions about what type of MRI or CT to order?
A neck CT would show the styloid processes. There’s been a discussion a while back about what Dr Hussein Samji needed when people are referred to him, so here’s the link : CT neck non-contrast “styloid protocol”?
There’s a few backwards and forwards comments, and some conflicting info, but MusicGeek (who’s had 2 surgeries with Dr Samji) got this clarified towards the end of the discussion. Dr Samji asks patients to request a CT neck, non-contrast, Styloid Protocol, and says this request should be universal, i.e. that radiologists should understand what’s being asked for, and should measure the styloid processes both sides. This discussions mentions that the disc and scan report should be sent in, and when booking an appt. a ‘new patient Eagles visit’ is requested.
I don’t know about the other doctors though, probably best to email/ ring their offices to see what they would need, as doctors sometimes like things done their way (some doctors like to look for any signs of vascular involvement, so like a CT with contrast, but Dr Samji isn’t worried about that so asks for a non-contrast CT!)
BTW- MRI’s are not generally helpful for ES as they show soft tissues and the calcification doesn’t show up well, CT’s are better.
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Thank you for this information Jules. I followed the thread to find out what Dr. Samji needed. In the end it looks like he needs a CT scan w/o contrast styloid protocol. Problem is I just had 2 ct scans of neck in April this year and July. So getting another one doesn’t seem appropriate especially with all the radiation. I emailed his assistant Kimberly at his office (found her email on one of the threads) and told her my story. I was hoping for a phone consultation. I thought I read he would do that for $500 dollars. But I would not be able to have surgery with him. I’m from Ohio so I’d try for one of the PA docs. I just thought Samji would be best for consultation since someone suggested he did phone consultants. I wonder if I could call radiology and ask them to measure my styloid? But perhaps if it wasn’t done by protocol it wont appear anyhow. I feel like I’m at another dead end…
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If you’ve had neck CTs then it should show the styloid processes and if the ligaments are calcified as well. (I agree with you on the radiation, that might be an overload!). I don’t know if you could get back to the radiography dept. where you had the scans and ask if they could review them and look at the SP’s? If not then I would think that hopefully one of the PA doctors would look at them and see you. It’s also worth bearing in mind that it’s not just the length which can cause symptoms, but also the thickness and the angle they’re growing in. Both Dr Newman and Dr Cognetti are experienced surgeons and seem to have done quite a few successful surgeries, so maybe get in touch with their offices and see what their admin staff say, and what format they’d want CT results in.
Hope you get somewhere, good luck!
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Curious of what are your symptoms
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Tambralee915,
I have head pressure (severe at times), swallowing issues, jaw pain, ear pain and pounding neck/shoulder pain, voice that goes in and out, gray outs that happen if I turn my head certain angles. Dizziness/nausea. I am mostly home bound due to these debilitating issues and have been to many doctors. Hoping I can find someone that can help me.
Best regards,
Terriann
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Thanks Jules. Have not heard back from Samji’s office. I have emailed my neurologist that ordered the scans to see if he would please measure the styloid ligaments. I did not see this post in time to explain they need to be measured in several ways including angle. I posted some of my symptoms below but realized I left out quite a few. I’ve read so many stories now of people that have suffered thru this to finally getting diagnosed. I have to hang on to hope. I no longer live - I exist. Hard to keep searching. Thanks again for your support. I truly appreciate it.
I don’t have much pain but a lot of vascular problems. It’s now affecting me when I lay Flatbread on the side. My juggler is being compressed because of the styloid process that is over 5 cm to the c1 and c2 level. I have surgery scheduled but now need to be cleared for surgery since I have a lot of issues when laying flat and breathing issues can be very serious during this surgery. I wake up about 5 times a night with my heart trying to catch up. It’s very very hard. Dr Dinesh Chhetri at ucla has done a lot of these surgeries. I would recommend him to you. Good luck. It sick and it’s affecting my entire life as well
I’m so sorry trambralee. I wish you the best. They will figure out a way to get the surgery done. I cannot lay on my right side without having compression problems which doesn’t seem to cause breathing problems but definitely hr/bp and severe dizziness gray outs not quite like what I would consider a black out. It also makes me dizzy to even rub on my right side of neck. Your situation seems so much worse. Let us know how things go.
I’m sorry for how you feel as well! It’s horrible isn’t it. Best of luck to
you as well… fingers crossed and prayers for you
I had ct that “showed nothing” even though I had a diagnosis of ES by my ENT doctor & previous 3D ct by my dentist.
The last ct I went in with a list of my general diagnosis, which included Eagles Syndrome. The new CT report stated I did have Eagles which was more prominent on the right than left. Not exactly the info I was looking for. I went back to hospital radiology with a copy of the emailed requirement from Kim at Dr Samji’s, that they had to have the dimensions. Obvious radiologist not too happy but he did do the measurements and amended the report. I sent that and the cd disc to Dr Samji for review and am now having surgery there on Nov6.
If you have a doctor that definitely thinks you have ES I would take your report back and have it looked at again and measurements noted. They may not like ti, but it seems to be a requirement by all ES surgeons before meeting or talking to you. I hope this is a bit helpful to you.
Best of luck!
Thank you Gina. My doctor never looked for ES. He is a neurologist and was looking for tumors etc. I did contact Kim at Dr. Samji’s office and she emailed me that they should be able to look at the scan I already had and take measurements. I’ve asked my doctor to have this done thru radiology Wednesday. If I don’t hear back from him my plan is to bug radiology to relook at the scan and do the measurements. I thought going thru my doctor first asking him to find out might help. I just want it ruled out or in so I can move on to searching what else could be wrong. It’s been a long tough 3 1/2 years but I try not to give up. Thanks again for your input.
I am having surgery done with dr. Jason newman in philadelphia. All i had to do was send my dics by mail. His receptionist called me back after he reviewed my scans. Only took 2 weeks for an appt. And surgery was scheduled for 3 weeks later (this monday) he is a gifted surgeon and a few have used him on this site.
So just to clarify Magen7984, you sent him your scans and he did the measurements for you and diagnosed you with Eagles Snydrome? Or did you have the dx already before sending cd’s to him? Good luck on your surgery. Sounds like he is a good surgeon. Keep us updated on your progress.
Yes i had the possible diagnosis from a ct scan. reviewed those and dignosed me. He then went over all my scans including previous mri’s. And had radiologist re review them to get the addendums on all of them.
I will contact their office on Monday. Thank you Magen.
Your welcome!! He is very kind! And not a long waiting list. Hes in office only 2 days a week and doing surgerys the other 3 days so he schedules pretty quickly.
I just hope he’ll review my scans and rule in or out ES. I’m happy to pay for his time.
I didn’t have to pay or give insurance info until he booked my appt. Just name and reports/discs. Told the receptionist possible eagles syndrome. And they handled it from there.