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Eagle Syndrome - Online Support Group

Some new symptoms

I had my right es surgery done almost two years ago. I have been having crazy symptoms that started awhile after that . My current ent ordered a cat scan and said my styloid bone was still there and looked a little fragmented . I have had chest tightness, palpatations, visual disturbances like spots, lines and the right eye always has a strange sensation in it. I have burning on top of my head on and off and pain on the right side of my head I can’t lay on that side it makes wierd sounds like bones are cracking in that spot. I have pain coming from my right ear almost to the middle of my jaw and a sensation under the surgery site as if it gets enlarged than deflates. The back of my head hurts to lay on the pillow and constant ringing in the left ear. Another to add is numbness in my arms and chest when lying down only. When I’m laying down I have to be partially up or it feels like I’m going to lose consciousness, also while driving my eyes felt like they rolled back almost like I was going to pass out so scary. I went to ER last night and all my test came back normal. Also have had memory loss some what and wake up every night in pain. If my head turns slightly left or right it brings everything on. I have been told I need surgery ,but have been concerned since the first failed . I was hoping I would be on #2 by now ,but the right side was
the most painful and now came back like never done. The ER doctor of course never heard of the eagles syndrome,but saw my CT scan with dx done at that hospital. He gave me a steroid shot and something to relax chest pain. No stroke he said and he will leave the ES to those who better know
. My neck is always so hot. I ask for prayers to get this under control as
the pain is pretty bad. And has anyone had similar symptoms?

Overcomer1 ~ All of your symptoms have definitely been mentioned by other ES forum members. I’m so sorry your first surgery seems to have gone “wrong”. There is a possibility of styloid regrowth when it’s only partially removed & that sounds like what may have happened in your case. The “fragmented” look your ENT saw may have been calcification of your right stylohyoid ligament. Sometimes the ligament calcifies in little bits i.e. on a scan it comes out looking like a dashed line as opposed to a solid line. Depending on how much calcification there is between the hyoid bone & styloid process, it’s possible it could make the styloid appear to be fragmented when it’s actually the ligament that has calcified. Since I haven’t seen your scan (& am not a doctor), I’m just speculating about a possible explanation for what your doctor saw.

It would be worthwhile pursuing either your original surgeon or another experienced ES surgeon (second opinions are a good idea anyway). You can make an appointment for a phone consultation w/ an experienced surgeon who’s outside of your area so you don’t have to travel. You’ll need to send your CT scan & the written radiology report to the doctor you choose. Insurance will often pay at least part of the cost for a phone consult.

I wish I could say/do more to help you. I’m sure you’re very discouraged. I will be praying for you to have wisdom as to which doctor to see/talk to & for you to get the surgery(ies) you need to fully recover from ES.

:pray: :gift_heart:

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Thank you so much Isaiah 40_31, I needed direction with this and don’t want to go to just any Doctor. Thank you for all your encouragement on this site it is so needed with this condition. It is discouraging to be back at square one. I don’t understand how eagles syndrome goes under the radar with so many specialist I realize we are all human, but at some point they need to be seriously educated …It breaks my heart to see how many people do suffer with this and I think of the ones that have gone through my experience and pray God direct them. I have faith , but I am human too without the my faith I just can’t imagine. I pray everyone on here gets the help you need and for compassionate , caring, attenative doctors meet you in your need :heart: Hugs and prayers to everyone :pray:

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I’m so sorry to read that you’ve had surgery but are having worse symptoms. Did the symptoms improve at all after surgery?
It would be interesting to know how much of the styloid process was removed before; some inexperienced doctors have broken the styloid process off & left bits in there, or not removed cacified ligaments, & as Isaiah says the styloids can regrow after surgery as well. I would have a look at the latest doctors list and think about seeing a doctor; whether you go back to the doctor who treated you or seek a 2nd opinion is up to you.
The symptoms you mentioned as Isaiah says have all been mentioned by members, some sound like they could be vascular. It’s possible as well that some of the symptoms are coming from the side you’ve not had surgery on.
I hope that you can get some answers soon & some help. Thinking of you, & will add you to my prayer list…big hugs…

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Hi Jules, Thank - You for all your help! I will see about getting a new cat scan as Isaiah said and hit the re-set button. I was sent to a well known facility thinking I was going to see a head and neck Doctor to get this done only to be re- routed to the ENT department head ENT doctor who said she did these surgeries and they don’t work and did a swallowing test on me cause I was having problems with food feeling stuck ,but test came back fine. She discouraged me from having it re- done or even having the other side done. I did improve after the first surgery prior to it I could not turn my neck to the right I would see black and it hurt alot. A top neurologist who I was sent there because my Dr. thought I had MS had seen my cat scan that showed eagles syndrome , and did MRI’s said I didn’t
have Ms , but never acknowledged the neck pain I constantly complained of and going black when turning my head. My Ent that diagnosed me told me to go back to him with my cat scan and ask him if he thinks this could be causing my neck pain. I had to drive over 100 miles one way in chronic pain ,but I did as requested and when I showed the head neurologist he looked at my cat scan and said he was humbled and that it looked like a wire was going across my neck so I couldn’t turn it .During this time of two years of Chronic symptoms no one would prescribe or do anything for the pain. I had one Neurologist scream with my than 9 year old daughter in the room after his CTA test he did on me came back normal he had my daughter in tears :cry: and went down a line of symptoms I didn’t have and come to find out he has did this to many others. It was a horrific experience for me and daughter as if I have nothing better to do than come to doctors appointment to not get any relief of my symptoms as they had become debilitating. I thought he was going to give me meds for Ms
as I was told I had symptoms of MS. I prayed for that Dr. as he caused great pain and felt horrible for others coming to see him. In my prior statements I said I wish doctors felt this which was a bad thing to say I don’t wish anyone to feel I appologize for that statement I shouldn’t have said that and pray for thosethat have treated me wrong. I was just tired of doctors in general as most didn’t believe the symptoms , never heard of eagles syndrome and because I was stating multiple symptoms I think they were puzzled which if your the patient it’s very frustrating. My jaw hurts before and after surgery starts at my ear and goes down my jaw I remember coming from surgery with this pain it has felt as though the surgical side ear felt like it was closing inside (strange). I was sent to many doctors and many didn’t know what was wrong so as some come to know
The Doctors think it’s got to be made up as these
Symptoms can be multiple. I need wisdom for the right doctor to fix this. Thanks again Jules you are a blessing to so many on this site. Keep encouraging and speaking wisdom many that find this forum are at witt’s end and need encouragement and understanding . God bless you :pray::heart:

Very generous of you to pray for doctors who haven’t helped/ caused you pain- easier said than done, but a healthier way than harbouring a grudge & being angry. I can really understand your frustrations, sounds like you’ve been treated badly by doctors…I hope that you can find the right doctor to help you. Thinking of you & I’ll be praying for you…

Hi Jules, Yes constantly have to pray over the doctors for much needed wisdom
I by the grace of God have been able to move forward after all the crazy Doctor stuff . I’ve worked for doctors in my younger years and understand they are human too . However that doesn’t change the fact we need to as a doctor allow ourselves to be teachable, humble and kind. That’s why it’s called practicing medicine. This condition needs so much attention I believe it is considered Rare because the doctors aren’t finding it or acknowledging the problem so there are people that have it not diagnosed which makes it rare. I think for me the hardest part is whether we give it a name like Eagles syndrome or not going to med school your are taught anatomy so by looking at a cat scan and knowing a patient is complaining of chronic neck pain when turning head I would think I would observe the neck area a little closer. I better stop at this lol! I will always pray for my doctor’s . Thanks again Jules and keep up the great job on here, we need to pray that better treatments, faster diagnosis my, and more Doctors to notice this.

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Overcomer1 ~ You’re being obedient to Luke 6:27-31 by praying for those doctors. I do agree w/ Jules that it’s hard to want to do something good for people who’ve been unkind to us, but it’s what God asks of us. I applaud you for having such a good attitude. That in itself will be healing for you.

Not knowing who did your first surgery, I’m going to give you the names of the four ES surgeons in the US that appear to have the most ES surgical experience at this point:
Dr. Cognetti in Philadelphia, PA (doesn’t fully remove the styloid); Dr. Newman in Philadelphia, PA (I believe he cuts styloids back to skull base if possible); Dr. Samji in San Jose, CA (removes styloid to skull base if possible); Dr. Milligan in Phoenix, AZ (don’t know his surgical strategy). I’m giving you these names for reference in case you decide to do a second opinion phone consult.

Please do let us know how your situation unfolds as you decide what comes next.

:hugs:

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I private messaged you! Thanks again for all your help♥️