Eagles Syndrome diagnosis

I can understand how scared you are, but do agree that you need someone with experience, you don’t want someone who doesn’t understand how important it is to remove as much of the SPs as possible, or you could end up no better off, & possibly having to have revision surgery…If your doctor answers all the questions Isaiah has suggested & you feel confident with him, then fine. Will be praying for you :pray:

Can’t do Dr Samji, he is in Canada and NY residents can’t get into
Country because of virus. I would like somebody more experienced.

Can’t find list of Doctors who do this surgery. Thinking I was to go to Dr in NYC, but can’t regenerate his name . Can’t even navigate this site. Too upset to even figure out. I’m 72 and not a techie person. An anybody help with list.

eastmas1,
Sorry you are stressing out and we are all here to help support you thru this. Im on west coast and not familiar with east coast docs. Im sure someone on the list will post some names on east coast.
Dr. Samji is located in San Jose, California. As far as I know, there are no restrictions flying into that area. I personally am considering doing a 2nd surgery with him and live in the Seattle area. Depending on your insurance, If you send your CT scan on disk to him, he will do a virtual visit consult. In the event your insurance doesnt cover it, the cost of review is $300. I had my scan read within about 10 days. I doubt you could get an in-person appt with most docs who specialize in this that quick. If you wanted to accelerate the process, you could federal express the disk to him and speak to his assistant about the urgency of the situation. Last time I checked, his surgery schedule is booked out about 3 weeks but with many docs they can accommodate urgent surgeries. Even if you dont have surgery with him, at least you will have an expert 2nd opinion and worst case scenario, it will cost you $300.

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Thanks, good idea. Going to get copy of disk. There is a DrDeCure in NYC suggested in this group who is 6 hrs away. I do want another opinion. I’ll get a couple disks to send off. Thanks.

eastmas1, here’s a link to the doctors list; if the link comes up at the end of the discussion, just scroll all the way up to the doctors.


Here’s the doctors in NY:
New York:
•Dr Bradley Simmons, Fingers Lake ENT, Canandaigua, 585- 396- 3110 www.flent.com
•Dr Yosef Krespi, Lenox Hill Hospital, Manhattan 212- 262- 2929 https://www.northwell.edu/find-care/find-a-doctor/otolaryngology/dr-yosef-krespi-md-11355020
•Dr Peter Constantino, Lenox Hill Hospital, Manhattan 212- 262- 2929 (mentioned by a member, but don’t know if he’s done any surgeries)
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
•Dr Mark deLacure, NYU, New York City (has done surgery on 2 or 3 members) https://nyulangone.org/doctors/1326049453/mark-d-delacure
Dr Andrew Tassler, Otolaryngologist, New York City, has done a couple of intra-oral surgeries.
Dr Mark deLacure has done several, including Brooklyngirl’s - if you want to find out about her experience, you can use the magnifying glass icon to search for her discussions. & if you click on her avatar, you can send her a private message. She has been poorly with neurological after effects of covid though.
Dr Cognetti in PA is very experienced too, not sure how far away he would be, but he does get booked up a way, & we’ve found out recently that he doesn’t remove calcified ligaments, not sure if you have the ligaments calcified and/ or elongated styloid process?

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Pre op is Tuesday, as bones are kinking my artery. Surgery scheduled based on testing and availability. Tests scheduled to make sure arteries are clear. Put me in neck brace til surgery. Thanks for list of Drs. Not inclined to go to NYC where virus is still going. I have to do this surgery twice. First left side, due to artery being worse on that side. I’m grateful they diagnosed me so quickly. Have no idea what recovery entails, every surgery I’ve had has been difficult. I trust Dr Coniglio in Rochester. Dr DeLacure staff was willing to get me in on Thursday if I could get there with test results in hand. Maybe Pa Dr , as my ligament are fine.
Your help is invaluable. Ether than anything I’m getting out of medical community. My primary care Dr hasn’t even bothered to call me. Need an advocate for me, but none other than this group. Thank you, thank you.

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eastmas,
Glad you are getting a handle on docs and wish you the best. I was thinking about a neck brace until surgery and was going to suggest for stability. Most docs do sides in 2 surgeries. Not surprised PCP out of pix. It takes a specialized doc who knows ES to take notice and listen to patients. Just make sure Dr. Coniglio has experience in a significant amount of these surgeries. IE: Ask how many he has done and how often.

I did ask and asked about if he removed bone to the skull. He does these surgeries, but since it’s rare not as often as I’d like. Did one just last week.
Thanks to this group, I’m learning what to ask. Reached out to friends in medical community here and some never heard of Eagle. A couple who knew about it ,have been helpful.

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Thats great. Best to be well informed going into any surgery. If its less than 50, I would reconsider.

Hi eastmas!

I’m excited about the prospect of being able to add another NY doctor to our list. We will wait to see how your surgery goes. It’s better to have options in any state. Some states have several while others still have none.

Hi Eastmas1 and welcome to the group. I am writing to send my encouragement. I hope that your surgery goes smoothly and that you get relief quickly. I will respectfully disagree with the idea that 10 ES surgeries a year is not many for Dr. Coniglio. (I have no specific info on this doc to bring to the table, and your level of comfort with him is more important than anything I write.) If he has done that many surgeries over a number of years, he is more experienced than most as we are rare birds. It is possible that there just are not that many ES patients in his catchment area.

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Will be praying for you… hope the pre-op goes as well as they can do, & let us know when you get a date for surgery!

I totally agree w/ what you said, onelessstyloid! Thank you for that encouragement for eastmas1.

Today is visit to neurologist for pre op. Both bones are 4.6 and will come off to skull and kinked the artery on left, so we start on left. Two operations. Left then right. Angiogram to see what arteries look like… I’m 72 so they could be clogged up with French fries, cheeseburgers and cookies. Read online that you are left with horrible neck scares, wondering about that, and what recovery will be like. Asking questions as suggested. I’ll keep you posted.

Usually the surgeons try to cut in the creases of the neck, but surgeons do have different techniques. Best to ask about that, but it’ll be worth it even if you do have a scar!

Hi Eastmas1,
I had large incision but it healed well. Within just a few weeks of my surgery others did not notice the scar at all unless I showed them where it was. Hopefully this will be your experience also.

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I had the same experience as onelessstyloid. I was 58 when I had my surgeries so not a spring chicken. See pics below.


I’m impressed, can’t even tell. How long did it take to heal, any special treatment used to make it look so good?

It took a couple of months to heal, & Dr. Samji recommended Mederma w/ sunscreen so that’s what I used. Others on this forum have used silicone “scar reducing” patches purchased on Amazon. Here’s a link to one brand (I’m not recommending it per se. Just want you to see what I’m talking about). https://www.amazon.com/Puriderma-Medical-Silicone-Removal-Sheets/dp/B07P6DTQTT/ref=sr_1_6?dchild=1&keywords=silicone+scar+patches&qid=1596078440&sr=8-6

I’m sure your surgeon will do a good job. Docs who leave big/unnecessary scars don’t get many referrals. :wink: