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Eagle Syndrome - Online Support Group

Life after Eagle 3 yrs later


#1

I apologize to those who have tried to reach out to me about my struggle and how I overcame Eagle Syndrome. About 3 1/2 years ago I started having sever ear and throat pain, but only on the left side. I didn’t think about it, went to see my doctor about a sinus/ear infection. When the doctor examened me, he told me everything looked good and I didn’t have any infection…no, I told him, I have a lot of pain in my ear and throat, but it’s only on the left side. He looked again and said nope, everything is good and clear. Well, after we argued for a bit he gave me a prescription for antibiotics, but made sure to tell me against his better judgement and very reluctantly. Well I filled the prescription, took one and then another, before I went to bed. I woke up the next morning in more pain then the day before!!! Called the dr and told him I’m worse not better!! So I go in and he gives me steroids. Next day, even worse!! Told me to take Motrin/Tylenol and switch every 3 hrs as needed for pain. Next day pain was almost unbearable. Now I’m on stronger antibiotics, steroids and norco and a referral to an ENT. So, here I am in massive pain. This is only within a couple a weeks time too. So, she examine me and tells me I have something called Eagle Syndrome. WTF!!! What does a bird have to do with all the pain I am in!!! Seriously!!! So she tells me about it and I have NO idea what she means by styloid processes and the back of my skull and all the other stuff that I feel has nothing to do with massive pain, I can’t eat, I can’t swallow, I can’t chew and the ear/neck pain is beyond bearable!!! I’m seriously living on soft foods and norco!! Side note, I have an extremely high pain tolerance also, so for me to be like I am is serious stuff!!! So she refers me to a dr at Loyola in Illinois. He tells me I don’t have eagle syndrome, my dr doesn’t know what she’s talking about and gave me MORE steroids and antibiotics!!! Then tells me if I’m not better in 2 weeks he will take me tonsils out…really!!! I wait about a month to hear I have tonsillitis!!! So I go back to ENT and she says no!!! It’s not your tonsils…and I have another referral for another dr at Loyola (see a oatr to here!!!)guess what…he’s even a bigger egotistical jerk then the first one I seen there…so, I see a dentist for TMJ issues, nope, something is definitely wrong but it’s not from TMJ… and then they think maybe an issue with the cervical fusion I had had about 5 yrs before. See surgeon and he does an exam, sends me for an MRI. He told me, your fusion looks beautiful, but I have never been so worried about a patient after an examination and I honestly don’t know what it is or how to help. So he gives me the number to Northwestern Hospital in downtown Chicago. Tells me to call the ENT surgical department and explain that you have Eagle Syndrome and need to see a dr at once!!! So I do as soon as I get home. They don’t laugh or give me a hard time just made an appointment with a Dr Bove for the next day. As I am sitting on his exam room, I am thinking another dr going to tell me nothing is wrong. So he walks in, introduces himself and says “you have Eagle Syndrome and I am going to help you”…I am scheduled for surgery a week later. After the surgery I was totally pain free to the point I didn’t want any pain medication. Although he made me take the prescription just in case…I never did take the medicine!!! I have been pain free with no symptoms as of yesterday this day, over 3 yrs post surgery!!! Dr Bove is caring, patient and a nice guy!! My advice, you don’t have to live with this!!! There IS help!!! Anyone can email me any time!!! I love you all and want you to know, there IS an answer AND help!!


Surgery this week with Dr Bove - Questions
#2

Thanks for sharing your story! It’s so helpful for people just diagnosed, or struggling to get diagnosed, that there can be a solution. I’m really glad that you’re pain-free now!
:grin::grin::grin::grin:


#3

You give me hope! It took over 2 years to diagnose me. Had surgery Aug 24, 2017 orally and have gone thru pain since then. They said could feel it as soon as put me under, but did orally and “ground it off” and hoped it help my problem. I have been in severe pain since then - gone thru TMJ, therapy, etc. and nothing has solved it. Not sure they even got it! Mr. Dr./TMJ specialist is not sure they got it either! About at wits end as I won’t take any pain medication.
At least the TMJ and inflammation has gone away a lot. Still have ear pain and sometimes jaw pain.
Glad you are doing so good!! The rest of us can only hope! It is so rare! Hard to find a doctor that can deal with this.


#4

Dr Bove told me it could be another issue with the nerve if I still had pain after surgery. But he wouldn’t know for sure until he took care of the Eagle Syndrome. If you can, try and contact him…you have nothing to lose and everything to gain. He was the only person to give me hope…

Joy Elmore

Residential REALTOR

Affiliated Real Estate Specialist with Homes For Heroes**

Baird & Warner

11914 S. Route 59, Suite 100

Plainfield, IL 60585

Cell: 779-■■■■

Office:815-■■■■

Www.JoyElmore.bairdwarner.com

** As an Affiliate Real Estate Specialist with Homes for Heroes,

If you, or someone you know, is a Police Officer, Firefighter (including EMS), Teacher, Medical Provider, or Military Personnel(Active, Retired, or in the Reserves), those “Hero’s may qualify for a SIGNIFICANT savings in the Purchase or Sale of their home when buying or selling with me.

For more information contact me and check out my website:

HOMESFORHEROS.COM/AFFILIATE/JOY-ELMORE


#5

Thank you!! This site was a HUGE help to me during the time I was trying to find a Doctor who actually had a clue…!!!

Joy Elmore

Residential REALTOR

Affiliated Real Estate Specialist with Homes For Heroes**

Baird & Warner

11914 S. Route 59, Suite 100

Plainfield, IL 60585

Cell: 779-■■■■

Office:815-■■■■

Www.JoyElmore.bairdwarner.com

** As an Affiliate Real Estate Specialist with Homes for Heroes,

If you, or someone you know, is a Police Officer, Firefighter (including EMS), Teacher, Medical Provider, or Military Personnel(Active, Retired, or in the Reserves), those “Hero’s may qualify for a SIGNIFICANT savings in the Purchase or Sale of their home when buying or selling with me.

For more information contact me and check out my website:

HOMESFORHEROS.COM/AFFILIATE/JOY-ELMORE


#6

Hi. Im so glad Northwestern helped you because they told me I was having Panic Attacks. My styloid bone was bigger than my Jaw bone and they totally ignored it, put me on Panic Medication and sent me home. I had many Cat scans and Mri they continued to ignore me over and over again. Unfortunately Northwestern is only know for helping people of a certain Status quo. I had to travel all the way to the Cleveland clinic to be diagnosed. I only had to see one doctor who diagnosed my immediately. Congratulations to you for being helped by Northwestern. Im very glad you are pain free and I wish you the best.


#7

I’m not exactly sure what you mean by “Status Quo” but I am a regular blue collar middle class individual. I also know another individual like me who also seen Dr Bove at Northwestern whom had Eagle Syndrome surgery a couple days ago. I can assure you, and all the others, he DID NOT “ignore” my test results in any way, shape or form. I am not sure who you seen at Northwestern, but it wasn’t Dr Bove. I’m glad you found someone to help you though and wish you the best.

Joy Elmore

Residential REALTOR

Affiliated Real Estate Specialist with Homes For Heroes**

Baird & Warner

11914 S. Route 59, Suite 100

Plainfield, IL 60585

Cell: 779-■■■■

Office:815-■■■■

Www.JoyElmore.bairdwarner.com

** As an Affiliate Real Estate Specialist with Homes for Heroes,

If you, or someone you know, is a Police Officer, Firefighter (including EMS), Teacher, Medical Provider, or Military Personnel(Active, Retired, or in the Reserves), those “Hero’s may qualify for a SIGNIFICANT savings in the Purchase or Sale of their home when buying or selling with me.

For more information contact me and check out my website:

HOMESFORHEROS.COM/AFFILIATE/JOY-ELMORE


#8

I’m so glad to have read your post. I’m also glad that you’re pain free (3 yrs) that’s great. What state are you in?
I understand what you went through. I also went through the same kind of run around for almost 8 yrs. my ES pain came and went, it would last for a week or so at a time. Then over last 2 years it got worse each time and lasted longer. The last time (before surgery) was 2 MONTHS of non stop 24/7 pain to the point I couldn’t eat, swallow, drink, talk, sleep,…nothing. I lost 20 lbs in those 7-8 weeks. I had to leave my job because I literally could not function.
They even shot me with morphine at the ER just to get a CAT Scan and the morphine did NOTHING!! My ES was pressing on my carotid artery.
I finally got in to see a surgeon that deals with mostly throat cancer and other throat issues but also does ES surgery. He scheduled me as soon as he could and I had the surgery done.
Like you, I was instantly pain free the moment I woke up. I didn’t even need the pain meds either when I got home.
But here I am 8 months post op and the pain is starting up again. It’s not constant, only once in a while, but I’m so upset. I was so happy after surgery to finally be able to get a good long drink of water without spasms and pain. Now I’m back to being terrified to swallow. So afraid that I’ll have pain. I called my surgeon and they want to see me again and assess the situation. He’s on vacation next week and booked solid after that, but they’re going to try to move things around to get me in and see what’s going on.
I just pray I don’t have to go through this all over again.
Thanks for sharing your story. All the stories from everyone here are helpful. I love this site and that we can all help one another.


#9

I live in the Chicago area. I had Dr. Bove do the surgery. Where do you live? Who did the surgery? The most important thing right now is to not panic. That will make things so much worse. Just keep telling yourself no matter what happens, I can and will get over this! If there is any way you can, try and see Dr. Bove. He told me that sometimes there is another issue with a nerve that causes the same symptoms as ES but he won’t know until after the surgery, and there are treatments for that. He was so wonderful! He told me that no matter what was going on, he was going to help me


#10

I hope that you can find out what’s causing this, & don’t have to wait too long…maybe scar tissue forming after the op?


#11

That is what they have told me for 6 months. Scar tissue on the nerve that was poked by the bone for 6 months & have to try and get the nerve to reattach to get me out of pain. Like they said above - it’s almost like the original pain I had with ES. My ENT is sure they got it all, but said it’ll prob take 1 to 1/2 yrs . I would not wish this on anyone.
Sometimes I have a pain scale of 5-6 and a lot of times during day or night I’m about an 8-9. I just melt an aspirin in my mouth - go thru some more pain and then good for about another 4 hours. I found
Ibuprofen doesn’t work hardly at all! Icing it does help or a very cold washcloth on jaw area to ear will give it some relief. I just wish this was over! Ha!


#12

Sorry I misstated above – they said I had tissue damaged as it took them 3 years to diagnose it and the bone had poked that tissue for that long (not 6 months). Hopefully, one day, someone will come up with a cure to reattach that tissue to eliminate the pain.


#13

Cupcake5 recently saw Dr. Cognetti in Philadelphia for surgery. She’s from your state. You could try privately emailing her to discuss how she’s feeling & ask about her experience w/ Dr. Cognetti.

Some thoughts: If your styloid process wasn’t removed to the skull base, it is possible it’s either re-growing or whatever is left has a sharp area that is poking nerves. Try to find out how much was removed & if your doctor really smoothed off the tip if he didn’t take the styloid back to the skull base. Some doctors just break the styloid off & call the job done. The remaining sharp piece then proceeds to cause problems. Additionally if he didn’t also remove your stylohyoid ligament(s), it’s possible it/they are partially or fully calcified & creating trouble.

I totally agree w/ imunique724 - “Just keep telling yourself no matter what happens, you can & will get through this.” A positive mindset goes far toward recovery.

:rose:


#14

That’s wonderful that he will help you regardless of which issue it is. Do you happen to know the name of the other issue he was referring to??
I am in CT and I saw Dr. Sasaki at Yale New Haven Hospital.
I saw him again last week. He’s referring me to a neurologist to see if they an figure it out. But he said he may have to shoot Long acting steroids in there again like he did during surgery. I’m hoping I don’t have to have steroids shots every 6-8 months. That would really stink!!
So now I’m waiting to hear from the neurologist’s office as to when he can see me.


#15

Thanks Jules, I’m hoping that’s all it is and that maybe something can be done about it.


#16

Thanks so much for all your info/help.
Dr. Sasaki did not remove the SP at all. He said he scraped the ligament off of it and injected some long acting steroids.
So yeah, that whole idea makes me a little nervous :grimacing:

Also, Yes, Cupcake5 and I have been emailing back and forth for a few months. She’s told me all about her not so good experience at Yale with some Dr. M? and about ending up going to PA to see Dr. Cognetti instead.
I saw Dr. Sasaki last week and he isn’t sure exactly what’s going on in there; so, he wants to get a 2nd opinion from a neurologist. Now I’m waiting to hear from neurologist for an appointment.
If this Neurologist can’t give a definitive second opinion I might be forced to head to Philly. :wink:


#17

Reacar1 - YIKES!!! If your styloid(s) are elongated &/or your ligament(s) calcified, the ONLY real solution to being mostly symptom free is to have it/them removed. Scraping the ligaments off (&, I presume, leaving them floating around in your neck) & leaving (an) elongated SP(s) in place then injecting long acting steroids into the site is only a band-aid. I’m sorry if this sounds harsh, but it is the reality with ES.

I recall a gal in NY who posted on here awhile ago who went to a doctor who said he could help her w/ her ES. While she was at the appointment, he actually physically broke her SPs through the outside of her neck & basically told her she was cured. It was an excruciating experience for her & certainly didn’t cure her ES symptoms.

I think seeing a neurologist is a good idea as cupcake5’s post-op neurology follow-up was very eye opening for her. Perhaps you will have the same good result.

Please keep us posted as to how things go. We’re always here for you!

Praying for you to have wisdom regarding your next step.

:pray: :two_hearts:


#18

I completely understand what you’re saying about this being a “ban-aid” and I agree. I’m highly disappointed in this whole situation. Had I known that his injecting steroids in there was only a cover for pain until it wears off, then at least I would have been prepared and had some time to do something further. It’s been 8 mos of pain freedom and now I’m feeling like I’m back to square one. Still waiting on neurologist appointment but for now I called Sasaki and asked about something for pain. I’m back to not being able to eat and pain 24/7 for the past couple of days. He called in a 2% lidocaine solution that I have to gargle with every 6 hours. I’m going to give that a shot and see if it numbs me enough to be able to eat something. I’m pretty sure it’s not going to help as this feels (obviously) internal pain and not topical throat pain. But I’ll try anything at this point. I’ll let you know how it goes.
Praying that neurologist can see me soon! His scheduler isn’t in until Tuesday :roll_eyes: so I’ve got almost another week before even hoping to get a call; that makes this 3-4 weeks since this started up again.
then who knows how long before the actual appointment. I’m so discouraged; but, I have to keep moving, stay positive and know that (hopefully) one day soon I will be rid of this pain; Again!!
The past almost 8 months of pain free chewing, swallowing, talking, sleeping…etc. have been wonderful after almost 8 yrs of pain. I hope to see those pain free days again very soon.


#19

I’m so sorry for what you’re experiencing especially that you were under the impression that Dr. Sasaki had “cured” your ES problem. What a frustrating situation for you. If you’re able to travel, Dr. Cognetti is an option. Drs. Eaton Chen & Benjamin Judson (Southern New England ENT) are listed in the US ES Doctors’ List in New Haven - 203 - 785 - 2593, but there’s nothing in the comments section about them. Most of the doctors on the list have done a surgery on someone on the ES forum. If you want to stay closer to home, starting w/ a consult w/ one of them would be a good option.
I will pray that the lidocaine spray helps eliminate your pain so you can eat. Sure don’t want you starving to death over this!! That would be AWEFUL!! If nothing else drink as much as you can (which I’m sure is also painful). Our bodies can go many days w/o food but not w/o fluids. Try to stay away from really sweet drinks as they tend to increase inflammation & cause dehydration - a double negative whammy in your situation.
Surgery will be the more permanent cure for you, so I’m hopeful you’ll be able to soon get an appointment w/ someone competent & willing to help you. If you can find a skull-based surgeon in your area, that’s the specialty that most often is willing to deal w/ ES surgeries. Often, skull-based surgeons are also ENT doctors.

You’re on my heart & in my prayers.

:sparkling_heart:


#20

Thank you. The lidocaine wasn’t a spray it was an awful thick Goo like honey.
Bottle said it was orange flavored. Hahahahaha NOPE, not at all. More like nail polish remover. :nauseated_face:

How can anyone gargle with that? Too thick!!
Anyway, All it did was make my tongue numb. I called dr back and his nurse said “yeah he didn’t think it was going to help either but figured give it a shot.” I told her I didn’t think it would either but I tried anyway. So back to nothing for pain again. I’m so tired of always hurting and there being nothing that can be done about it.

Thank you for the list of Dr. my sister in law works in the local hospital here so has knowledge of some as well. Both in her hospital and another local area hospital. Plus all the drs and advice from all of you here I’m making lists and researching things. Plus talking to Cupcake5 as well. Really contemplating going to see Dr. C in PA.
Could you please direct me to where you got the list of ES Drs from New Haven. Was that online? I’ve been looking and can’t find.
Also what’s the phone number you gave me for? Or is that the number I should call to get the list??

Thanks for all your help! I really appreciate it more than I can say!! Xoxo

~Maria