@CharlieAngel - Theeaglehaslanded had surgery w/ Dr. Cognetti earlier this week on 8/5. Still waiting to hear the results. 
Oh WowâŚcool! I hope all went well for them and the eagle landed safely lol.
Thanks!
Hello. I am recovering and so far everything is going ok. I am still a little weak and get tired easier, but I think with time I will be going strong. Dr.Cognetti is awesome ! He sometimes can be harried but overall the man knows his stuff. The surgery team are also very kind and professional. If you have any further questions just let me know.
Glad things went well. I am having my surgery on oct 7th. In a way i cant wait but at the same time i am terrified. Is there a lot of pain involved? Are you able to eat regular food or is there thoat tenderness? Any advise would be helpful. Thanks
If you have a chance, in the Newbies section, thereâs lots of ES Info, and a section about surgery, what to expect etc., and some links to previous discussions and peopleâs experiences post- surgery. It does depend a bit on whether your surgery is intra-oral or external- intra-oral can make it a bit more painful swallowing afterwards the same as a tonsillectomy. Best advice is to get prepared and have smoothies etc. ready, and be prepared to sleep propped up. A lot of people recommend ice packs to help with swelling too.
After my first surgery opening my mouth much was painful, and I had lots of sloppy stuff to eat, but second time I had no trouble eating at all! (Both external).
Hope all goes well in October!
I had surgery August 5 th . The first several days were rough, however on the third day post op I realized my base of neck didnât hurt and that was a relief.
You are not far from Philly. I had Dr. Cognetti at Jefferson and he has two stars. Awesome surgeon.
Hello all, Iâm a newbie and am just trying to figure out whether or not I have ES. About a year ago I noticed some discomfort in my neck under my left jaw and after poking around, felt this skinny, hard and pointed âthingâ sticking out. My response was âWhat the heck is that?â as I had never noticed it before. I had my PCP look at it and she didnât think it was of any concern. Six months later I asked about it again and her PA said the same thing. Three weeks ago I started having some weird sensations in my throat, soreness and the feeling of tightness/swelling. I thought maybe I had an infection, allergic reaction or strep. I tried a number of over the counter meds and nothings seemed to help. I went to my PA and she checked for strep but negative. I had just come off a round of antibiotics due to having a tooth extracted on my right side so we considered âthrushâ and I was on Nystatin for a week. Not much improvement.
Iâll digress here to mention that for a few years I have experienced a tingling sensation in the left side of my head around the temple and above the ear. That sensation has spread and is recently more regular such that I can feel it from the tip of my chin, down the side of my throat, along my jaw, in my ear and in my cheek to the edge of my nose and under my eye. It has been accompanied by a feeling of inflammation in the area of the âthingâ.
I had a CAT scan (I think without contrast) and the radiologist didnât identify any âmassesâ but did note a âbenign-appearing tonsil calcificationâ. I was sent to an ENT and this doctor dismissed the tonsil idea and brought up ES.
The last few days, especially nights, have been very uncomfortable. I had more pain in the throat than I have ever had (still not intolerable) and I believe my normal back sleeping position is what was aggravating the issue.
So, I am not sure if the ENT is right or not as I donât seem to have the pain (yet) that others experience but the feature is definitely there, thereâs inflammation in the area and my throat/tonsils are feeling really weirdâŚnot like your normal sore throat. And with all the tingling I canât help but think it is pressing on some cranial nerves in the area.
I am scheduled for an MRI of my brain with focus on the 5th cranial nerve and I donât know if this is the proper next step to rule out some other issue but I doubt it will confirm the ES diagnosis. I have suggested my CAT scan be converted to 3D and my MRI be expanded to include my next to check on the carotid artery, etc. for any issues.
Thanks for listening to my story and if anyone has any thoughts, comments or ideas I would appreciate hearing from you.
P.S. I should mention my recently deceased mother complained about similar sensations in her head for decades and numerous CT scans and MRIâs never identified anything. She also had swallowing issues and had to have her esophagus stretched several times over her lifetime.
Hi bketea66!
The tingling you describe is in a very similar area to where I had it before surgery, and while I was recovering from surgery. I also had pain in all 3 branches of the trigeminal nerve (Amitriptyline has helped), so itâs good that theyâre going to look into that with an MRI. If youâre concerned about any compression of blood vessels then either a CT with a contrast or an MRA would show this better than a straight forward MRI. Radiologists, unless specifically asked to look for styloid length donât seem to often check this, so if you can ask them to look again on your CT then that might help, and having it converted to 3D is a good idea too.
Everyoneâs symptoms vary, so donât worry that just because you donât have the same as some have experienced that you donât have ES- I didnât have severe pain that some have had, thankfully! And I never had any trouble with swallowing. But am mighty glad to have had both sides done, and feel loads better for it!!
If youâre having trouble getting comfy at night, the best advice I had was on here, and that was to sleep propped up with wedge pillow of lots of pillows etc.- it definitely helped me. A physio also suggested a V shaped pillow which was good advice too- I was always a side-sleeper, and it took the pressure of that painful area at the side of my neck and under the jaw.
There have been a few theories put forward as to the causes of ES- there does seem to be a genetic link, that you might be more likely to have elongated styloids, so itâs interesting that your Mum did have similar symptoms.
Hope this helps, and good luck getting your scans sorted!
Hi there!
My first ES symptoms were neck pain on the front left side of my neck & a hard, bumpy lump under my jaw near where it curves under the ear. I thought it was a clogged salivary gland & after a couple of inquiries ended up seeing an ENT who immediately diagnosed ES pending results of my CT scan (w/o contrast) which he prescribed. My CT scan showed I had bilateral ES but only the left styloid could be felt externally. It took a couple of months for me to settle on a surgery date & in that time I began to have pressure behind my eyes, ringing ears, pain at the back of my skull where my styloids attached, intermittent sore throat, swallowing issues, & myriad other little annoying aches & pains. The worst symptoms I ended up w/ were more vascular - my blood pressure would suddenly drop when I was exercising; Iâd have trouble catching my breath during exercise & would be intermittent light-headedâŚamong other things. Once my right styloid was removed the vascular symptoms mostly stopped, but by the time I had my left styloid removed, I could not only feel it under my jaw but also at the base of my tongue & in my throat.
As Jules said, there are some commonalities of symptoms among ES sufferers but there are also many individual differences. Your symptoms are absolutely among those experienced by some people who have ES. I hope the further testing you plan to undergo will help you to know diffinitively what is causing your symptoms. She has also offered you some great advice which you will find very useful.
Please keep us posted as to what you learn.
Hi all,
Well hereâs my update. I asked that my CT scan (which was without contrast) be re-evaluated for the possibility of elongated styloids. They reviewed it again and measured them. My left styloid is 4.7 cm and my right is 4.9. No evidence of calcifications involving the styloid to the hyoid bone. Thatâs it.
I had the MRI of my brain with contrast. I had asked that they include my neck but they refused indicating the CAT scan was adequate. The MRI was supposedly to rule out any tumors or other issues with my brain and the various cranial nerves. I havenât seem the report yet but the nurse called and said it didnât show anything of concern.
My symptoms, particularly associated with my throat discomfort and neck inflammation have improved substantially in the last week or so. I still have the tingling in my neck and face and head and some mild throat discomfort. A sensation of prickly pain occurs occasionally also.
I am now at the point where I need to decide whether to seek out additional medical advice or even consult with a surgeon. I will likely go back to my ENT to hear her thoughts but Iâm pretty sure I wouldnât consider any type of surgery in the small town I live in.
If anyone has any thoughts or suggestions I would appreciate it.
You have Eagle-like symptoms and your styloids are definitely elongated, so it sure seems likely you have Eagles. Youâre not in that much pain yet, so you have time to decide what you want to do.
I looked at your profile and youâre in Oklahoma, so I think youâre right about considering traveling when you want to get this fixed. I donât know of any doctors familiar with Eagles close to you. There are two âmainâ doctors who have the most experience with Eagles - Dr. Samji in San Jose, CA and Dr. Cognetti in Philadelphia. There is also Dr. Forrest in Columbus Ohio thatâs done quite a few. There are lots of other doctors around the country who have performed successful Eagles surgeries as well. We have a doctors list in the Doctor Information tab that gives the names and locations of doctors that have done successful surgeries on forum members in the past. They are not recommendations, but a good place to start. You can also look for an experienced skull-based surgeon. One of the most important things is to find someone who has a lot of experience doing surgery in that area of the neck.
One of the main questions about surgery is external vs internal. Look in the Newbies tab for information regarding the two types. We have people on here with success from both types, but external is generally considered to be better. Usually the more experienced doctors use external surgeries. But again, weâve had lots of people on here with success from internal surgeries as well.
Another important factor is to have as much of the styloid taken out as possible. Some doctors will only take the tip off, or just a small portion. But that leads to the possibility of still having issues afterward and then having to search for a doctor to do a revision surgery to get more of the styloid out. So I would say to steer away from the doctors who just want to take a little bit off the styloid. Definitely avoid any doctor who wants to break it up into pieces and not take any of it out.
Good luck.
Im newly diagnosed as well i sneezed and felt two pops during a sneeze i could not breathe so i rushed myself to the ER, low and behold i was diagnosed w Eagle Syndrome after a C scan
Have you had any other symptoms? Did they suggest any treatment for you when you were diagnosed?
Wednesday morning sneezed felt two pops began to suffocate rushed to ER, was diagnosed w ES as it apparently disrupts my trachea forming air pockets and the air pockets bursted as i sneezed. I have felt for months an object in my throat but lo and behold its this.
I have only gone to General Medicne Dr, he was astoundedâŚ
He put in a SAC request for first available ENT appt.
He did say the surgery may have to be at Loma Linda or UCLAâŚ
Hi you say it was not ES in your case. Did the styloids still appear elongated in your scan?
No, my styloids were fine. It was another bone that wasnât okay, below the hyoid. Same neighborhood, which is why this group is helpful to me. Very unusual. I must have injured it in some kind of traumatic accident. It was supposed to havve a ligament attached to it, but instead, it was unnattached with only mucus attached. The missing ligament goes up to the hyoid. 11 months after surgery, Iâm doing better. Iâm talking and sleeping better.