Im 72 female ,doing CT next week. Symptoms have been, something stuck in throat and or low grade sore throat and ear ache. Can this be managed without surgery. Never even heard of Eagle’s. I’m in Pittsford New York and wondering if I need second opinion.
Hi eastmas1, & welcome to the site!
I’ve sent you a welcome message with info about the site etc…
Surgery is the only cure for ES, but not everyone opts for this. There are some risks with surgery, so some people decide that their symptoms are not bad enough to take the risk of surgery. For others, their quality of life is badly enough affected that they’re desperate to get rid of the styloid processes! Injections of steroids/ lidocaine can be done into the area, which can help with the pain & inflammation for some people, but it doesn’t always work & can only be done a few times. There are some nerve pain medications which can help with symptoms too. ES symptoms can stay the same, or get worse with time, no-one knows why! I had nerve pain with ES, but decided I could live with it enough & managed it with medication for a year, but then I started getting vascular symptoms & started to feel quite ill (I developed a slipped disc in my neck which I think contributed to this, shifting the styloids a bit!), so that prompted me to look into surgery. I had both sides done after I found out about a doctor on this site & was really glad I did.
If you want to consider a second opinion, we have a list of doctors familiar with ES:
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752/2
Dr DeLacure on the list has done several surgeries on members so would be a good bet. It’s best to see someone with experience, because the op can be tricky; if not enough of the styloid process is removed, symptoms may not go or could get worse!
Hope this helps a bit!
Hi eastmas1, I’m also in Rochester (Chili) and got an CT a few years back after my dentist discovered it on an xray. I had found Finger Lakes Otolaryngology on the list of doctors and saw Dr. Centonze. He persuaded me to not have surgery right away and I received a lidocaine (at least i think that’s what it was) injection which made my symptoms better.
My symptoms appear to be coming back (neck aches, foreign body in throat) and I am interested in getting a second opinion as well, especially if I can find a doctor at Strong that knows about ES and has performed the surgery.
Thank you for reaching out. I’m 72 female and went to Dr Coniglio ,who is Head, Neck Throat Dr. after suffering for three months with sore throat and ear ache. I sometimes start choking on my own saliva or with food or out of nowhere. Having CT scan on Wednesday. So afraid of surgery, have auto immune deficiency called hypogamma something that makes it easy to get infections, etc easier than most. Surgery and me don’t get along, plus I’m no spring chicken. Had my tonsils out at age 10. Dr said this Eagles shows up often with tonsillectomy patients. Today Fee no soreness in throat, but feel like something stuck in throat and neck ache. All mild. Dr Coniglio does the surgery, but says he only sees maybe 10 people a year with Eagles. I liked him very much, and said he prefers not to do surgery for most people. I will let you know how I make out on Wednesday. After that , I “” want second opinion. This is all pretty new to me. I thought it was cancer, so pleased about that. I must tell you, had a neck facelift 2014, totally regret. When horribly. Incubated due to excessive bleeding and lost my voice and swollen tongue for 8 months. Y throat has never felt the same, always numbness. What I worry about is stroke from bone pressing on artery. Keep me posted on what you do. Thanks.
Thanks for info. I have bone spurs on 3 and 4 vertebrae of neck and shoulder pain, womderif this is all connected. So afraid of surgery, I’m 72 and have auto immune hypogamma… which means I get infections, pneumonia, etc easier. What Dr did your operation and were you healthy otherwise and how old are you.
What Dr did your surgery? Thanks Sharon , eastmas1
I’m UK, so had a surgeon there, not much help to you, I’m afraid!
Bone spurs seem to be quite common with ES; metabolic disorders as well as tonsillectomy & neck trauma are known causes, I guess how the body lays down calcium counts as a metabolic disorder…
I was pretty healthy when I had surgery, although I had symptoms of an autoimmune disorder (undiagnosed Sjogrens syndrome), the symptoms started about the same time as the ES ones got worse, my feeling is that the inflammation in my neck maybe sparked off an autoimmune reaction, just my thinking though, never seen research on that! I was mid 40s when I had surgery, I did heal pretty quickly & compared to how ill I’d felt the surgery seemed easy, but of course I’d not got the complications you have…
If you’re concerned about the risks of a stroke from ES (which is very, very rare), you could have a CT with contrast, which shows if there is any compression of blood vessels. The symptoms of vascular ES are dizziness, fainting, feeling off balance, pain in the carotid artery area & up to the eye, head pressure, ear pressure, tiredness, brain fog…there’s more detail in the Newbies Guide Section:
ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular , &
ES Information: A Scary Subject
Hope this helps!
Hi eastmas1,
Just want to add a little to what Jules said. External ES surgery i.e. through the neck instead of through the throat, has a much lower risk of infection. Both Jules & I had our surgeries done externally. I was 58 when I had my surgeries. I’m 63 now. I’m in CA, & Dr. Samji (the most experienced ES surgeon on our doctors’ list) did both of my surgeries.
A few of our forum members have found that their ES symptoms could be controlled by nerve pain medication. It can take some time to figure out which one & which dose work the best. The lidocaine shot that Be_kind referred to has also helped some of our members temporarily. Often lidocaine is combined w/ cortisone so there is a numbing agent & anti-inflammatory in the injection. These injections are usually done w/ ultrasound guidance so the doctor can place the medication very specifically.
As you have noted w/ your neck “facelift”, all surgeries have risks. For the most part, our members have found really good relief from ES symptoms when their surgeries were done by a very experienced ES surgeon. Those w/ poor results generally found that not enough of their styloid was removed &/or a calcified stylohyoid ligament was left in place rather than being removed. It is important that the surgeon remove the styloid to the skull base if possible & remove the stylohyoid ligament if it has any calcification on it. If you discuss surgery w/ your current ENT or your second opinion ENT, it is vital to know what their surgical practice is for ES. “Snipping the tip” off the styloid almost never gives symptoms relief, & the patients who have this done later find themselves needing surgery again to remove what’s left.
Thanks, learning so much from all. CT on Wednesday with contrast whatever that means.
Hi eastmas1,
CT w/ contrast means that your soft/vascular tissues will be visible. They cannot be seen in a CT scan w/o contrast. If you find that holding your head in a particular position (i.e. looking up/down, left/right or at an angle of some sort) makes you dizzy, brings on a headache, or exacerbates your symptoms in any way, you will want to have your head in that position during the CT scan.
Having your head in a neutral position that does not cause or increase symptoms will not show if your styloid(s) are causing vascular compression. That is what your ENT is looking for.
Just been told by Dr Coniglio that I need surgery ASAP. Bones are long on both sides and kinking my artery. Face, throat and ears numb. This is moving fast. Seeing Neurology Dr and getting f angiogram. Pretty much scared.
from my iPhone
| Jules
July 19 |
- | - |
I’m UK, so had a surgeon there, not much help to you, I’m afraid!
Bone spurs seem to be quite common with ES; metabolic disorders as well as tonsillectomy & neck trauma are known causes, I guess how the body lays down calcium counts as a metabolic disorder…
I was pretty healthy when I had surgery, although I had symptoms of an autoimmune disorder (undiagnosed Sjogrens syndrome), the symptoms started about the same time as the ES ones got worse, my feeling is that the inflammation in my neck maybe sparked off an autoimmune reaction, just my thinking though, never seen research on that! I was mid 40s when I had surgery, I did heal pretty quickly & compared to how ill I’d felt the surgery seemed easy, but of course I’d not got the complications you have…
If you’re concerned about the risks of a stroke from ES (which is very, very rare), you could have a CT with contrast, which shows if there is any compression of blood vessels. The symptoms of vascular ES are dizziness, fainting, feeling off balance, pain in the carotid artery area & up to the eye, head pressure, ear pressure, tiredness, brain fog…there’s more detail in the Newbies Guide Section:
ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular , &
ES Information: A Scary Subject
Hope this helps!
Hi eastmas1,
I’m glad the doctor you’re seeing is being aggressive in looking into the cause of your symptoms. If you have bilateral vascular compression, it is important to get the styloids removed to prevent further damage to your vascular tissues & nerves.
Is the doctor you’re seeing experienced w/ ES surgery? You need to make sure your styloids will be removed as close to the skull base as possible not just shortened & that your stylohyoid ligaments will also be removed if they have any calcification. Also, will both sides be done at once or in separate surgeries? If your surgeon is at all vague about how much styloid will be removed & if the s-h ligaments will also be checked & removed if necessary, then you should see Dr. deLacure or another doctor on our list who has more experience w/ ES surgery. If not enough is remove, your symptoms can remain & a second round of surgeries might be necessary. You do not want to go through this process more than once.
Please ask your doctor about the things I’ve mentioned above before signing up for surgery with him.
It’s hard for you that your situation needs treatment more urgently, but I’m glad it’s been discovered before you had something life threatening happen.
Please let us know what you find out from your angiogram. I’ll be praying for you to know the right course to take.
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Thank you. So glad I found you guys. My head is spinning. Not even sure what vascular means. Is it my artery? My Dr started me in aspirin and said to keep my neck straight. Just waiting for call back from Dr Coniglio in Rochester Ny. I hope he knows his stuff. I don’t feel like I have time to fly to NyCity for another opinion. He made it sound urgent. And I do seem to be getting lots of numbness suddenly. Need prayers. Will mention all this stuff as you pointed out. Thanks so much.
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Try to take a breath and think this thru. If Dr. Coniglio only does 10 of these surgeries a year, I would take a pause on him doing the surgery given your age and other conditions. Dr. Samji who is the most experienced on our list has done over 450 of these procedures so that is a benchmark for asking other doctors experience in doing them at your end of the country. Do you really want a doctor who doesn’t do this surgery very often to cut on you? Dont let them scare you into it too fast.
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 
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.
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752/41
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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