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Eagle Syndrome - Online Support Group

Thankful for you all


#1

Hi Eagle community. I’m at the hard part of my journey - trusting I will get better. I am happy to have you all and will post more in time. I am going to Emory in Atlanta this week to see the surgeon that is mentioned on this site. I have had one deflating appointment and one good appointment so far. I’m taking three discs of scans and my list of symptoms with me this week. I am so grateful I found this website and I am reading all of your inspiring and helpful posts! I am a young (ish - lol) busy mom of four kids who is having trouble swallowing and in alot of pain. Bilateral calcification of ligaments and a click you can feel from the outside when they crackle or get hung up on something when I swallow while looking to the left. Bless you all - I do not feel alone.


#2

Glad that you’ve got an appt. booked, & hope that it goes well! Unfortunately it’s not unusual to get turned away by doctors, lots of members have had symptoms for years before being diagnosed! Hats off to you coping with 4 children & dealing with this!
Good luck!


#3

Thank you Jules - I teach my kids words like perseverance, resilience, determination - now they are watching my actions through this! This list is what I’m taking with me to Atlanta on Tuesday so I have it all typed up in front of the doctor and my husband and I.

Symptoms
•“Popping” or “Clicking” on right side of throat when swallowing with pain up both sides of neck
•Throat feels “small” and “uncoordinated” when food and liquid get to back of mouth
•Sore throat and hoarse voice, fullness in ears, tingling in lips and cheeks, sensitive to loud noises
•Pain in neck when sticking tongue out, swallow normalizes for one swallow, constant pain in sides of neck up to jaw line, pain at base and sides of tongue

Timeline
• January 2018 – Onset of choking sensation
• July 2018 – Onset of clicking around hyoid
• July 16, 2018 – Barium Swallow Study normal
• August 29, 2018 – ENT said sounds like TMJ.
• September 17, 2018 - Primary care provider prescribed ibuprofen, muscle relaxer and anti-depressant.
• September 20, 2018 – Oral surgeon injected ½ cc of Marcaine and ½ cc of Kenelog steroid on the right side of my neck, no improvement. CT scan done and discovered bilateral calcification of stylohyoid ligaments
• October 10, 2018 - ENT in Atlanta quickly looks at my CT scan and says “this is not Eagle syndrome” and refuses to palpate my throat to feel click/pop of ligament when I swallow. After three requests he agreed to feel the pop and then said “that’s normal, mine does that too”. Left there totally deflated but found this group!
• October 15, 2018 – Began Chiropractor visits – total of 5 for deep tissue massage of neck. No improvement. Awful pain when he pressed on stylohyoid ligaments
• October 24, 2018 – Began TMJ mouthpiece treatment, no improvement
• October 25 – Video swallow study normal; one treatment of Acupuncture, no improvement
• October 29, 2018 - went back to original ENT who now agreed it’s not TMJ and he said “this is definitely Eagle syndrome” and gave me some names of doctors who can treat it.

I have all my cd copies of the scans and the written reports too. If the appointment doesn’t go great (I’m hopeful it will though), then I’ll tell myself that when I get home I’m going to let all you guys know how it went!


#4

Your timeline is perfect and will be appreciated by the doctor. I’ll be praying that doctor in Atlanta will “greet you w/ open arms” & get you on his surgical schedule ASAP so you have an “end date” to look forward to. It does take some time to recover from ES surgery - at least a couple of months & up to year for some symptoms (i.e. nerve related as nerves heal slowly). Even with that knowledge you should notice the disappearance of some symptoms as soon as when you wake up from surgery. HOORAY!!

Please do let us know how the Atlanta appt. goes whether good or bad.

:pray: :hugs:


#5

So positive and uplifting - bless you. I was in the dark before I found this group. :two_hearts::two_hearts::two_hearts:


#6

I was in the same boat & now I’m a moderator here! Never thought I’d do this sort of thing but love it! There’s so much wrong & discouraging info out there. We are so happy to be able to listen to & support you!

:sparkling_heart:


#7

I had my PCP prescribe a sleeping pill yesterday because my imagination is on fire - I’m never going to get better, I’ll never be able to enjoy Doritos again (my vice), lol! But I am headed to bed now with the positive things you have said. I’m telling myself: get through Tuesday. So, I’m going to assume it’s going to go well at Emory Tuesday. If it does not, I’ll be back here and you guys can keep cheering me on as I pick up the pieces and go forward. Peace be with you all.


#8

Doritos eh?! Check out this post I did a little while after surgery, sometimes small things matter too! Toffee!


#9

I get that!!! Maybe something good that comes from a situation like this is not taking everyday little things for granted! I know I’m not alone in doing this thing I’m doing - staring at everyone’s throat seeing if they have scars, looking in awe at my kids swallow a lot of water at once really quickly, seeing someone take a big bite of food on television and thinking “how do they do that?!” :rofl:


#10

I love your perspective SewMomma! You made me laugh :joy: Yes, it is amazing how something like ES can change your life so much & give you a new appreciation for things that you “used to do” w/o thinking about them! The upside is, you’ll be able to do those things again one day - soon after those nasty calcified s-h ligaments are removed!! :+1::+1:


#11

Thank you so much. I need constant reminders that I WILL be better.


#12

SewMomma, you will get better…just a matter of finding the right doc. I am currently in that mode as well. Just had a very minor surgery on my finger and my ortho doc is more interested in my ES than some of my other docs - go figure! I also have that “ligament gets hung up on something” thing. It is quite difficult to describe but I know exactly what you are talking about and finally knowing what it is has been helpful so that I don’t panic like I used to when it happened. Only thing I noticed last time it happened (other than the pain) is that I cannot swallow when it does it, but I can talk. I think you will find “Knowing” what is going on when you are experiencing all these wack a do symptoms, helps to ease the anxiety and make things not quite so scary. I have been searching for a diagnosis for a good many years, knowing that something was terribly wrong (despite all the docs and test and scans saying otherwise). I am much more relaxed about it now and my constant anger has subsided a good deal. Now I’ve just got to find the right surgeon and a block of time off to get this thing done! Best to you and your search for release from this nasty thing. :sunflower:


#13

Thank you for the encouragement. I have had many phases since the onset of my first symptom. Confusion, denial, fear, anger and I’m creeping toward acceptance.

I am SO glad someone else in the world has actually felt the ligaments do weird things! Sometimes mine has a “double crack” like it hits something going up and then doing down! My husband has felt it about…500 times :smile:!!

I have my clipboard of papers, list of questions, timeline and 3 CDs ready to go tomorrow. I hope this guy is the one. If not…onward.

And yes I COMPLETELY agree I’m doing infinitely better now “knowing” what on earth is happening in my throat. I have had not one, but two doctors (chiropractor and acupuncturist) say, “you need to learn to ignore that and move your seat at the kitchen table to a position where you don’t have to turn a certain way when talking to your family”. Unfortunately I paid to hear that garbage. Oh well - “Let it go, Let it gooooo”! :musical_note::musical_note::musical_note::musical_note:


#14

Again, I appreciate your attitude! :+1::+1: It’s awesome & will go far in helping w/ your healing!!
FYI - Frozen 2 is going to start production next spring. My brother is hoping Disney will hire him to help work on it. He does the “lighting” aspect in the 3-D animated films he works on i.e. figures out the light source & adds the shadows & makes them move appropriately w/ the character in question. It can take a couple of months to perfect the shadows in one several second long scene . It’s a very tedious job, but he loves it! He just finished working on Wreck-it Ralph 2. :grin:


#15

You have forever changed how I watch animated films :stuck_out_tongue_winking_eye:


#16

I just got back from Atlanta - it went GREAT! Dr. Dedhia is so nice, so humble and the perfect mix of academic and personable.

It was wonderful to hear “you have both pathological proof and symptoms of Eagle syndrome”. Official diagnosis in the books! Feels GOOD! Hearing I didn’t have it on October 10th made me take the shape of a puddle unfortunately for about 2 weeks. But, I picked myself up and got an appointment with someone more experienced. The other guy I went to on the 10th could just see me faster and we all know what desperation feels like. He was the wrong guy for me. I learned today not everyone is comfortable with this surgery so they sometimes just want you to go away.

Dr. Dedhia is very comfortable and confident with the procedure. He is VERY conservative. I have calcification of ligaments from the styloid process all the way to the hyoid on both sides. He wants to start with the right side (which is where I feel the click when the hyoid snags on cartilage or whatever!) externally. He said he will get AS MUCH as he can but he stops when he sees the juggler or the carotid. He is going for an inch or maybe a little more he said. Then he said he’s going to close up shop and at post op I can see if I have any more symptoms to pursue the other side. Like I said he’s very conservative so I loved that he wasn’t ready to sign me up for both quite yet for his own paycheck - he truly wants to know how I’m feeling with the first one and how I recover, etc. I brought up my concerns about “taking it all out” and he said “As soon as I take that chunk out and un-tether it from your hyoid, your symptoms should improve dramatically and I don’t want to do any damage while in there”.

I really like how cautious he was. I feel like I’ve found a good surgeon who will eliminate as many symptoms as he can (the clicking for starters!!) while avoiding too many risks. I’ve learned to trust that God put our family in Georgia and this is the surgeon for me. I went through the same thing when our daughter with Down syndrome had open heart surgery at 9 months old. “Should we get another opinion, etc”. This surgeon said he’s done 8 of these surgeries, he takes a special interest in Eagle syndrome and he’s happy to help me. I think I am done searching.

I do have some voices in the back of my head about second and third opinions but I’m a tired mom just trying to make Santa happen for my kids and I want this to be done. Dr. Dedhia was so easy today. Plus I knew he spoke French (I lived in France in college and am teaching my children to speak it) so we talked in French some and it was just a very pleasant experience. Thank you for letting me share. A month ago I was not able to get out of bed some mornings and I spent way too much time in the bathroom with a nervous stomach. I’ve been through hell with this and today was like the first light I’ve had since January.

Thank you all for listening. I’ll let you know when I get on the schedule.


#17

January 10th. I’m excited. And nervous. Nercited.


#18

WOOHOO!! I love your sense of humor & perspective on all this (as I keep saying…I get accused by my son of having no sense of humor…:weary:).

Regarding your surgeon, conservative is good to a point, but too conservative means perhaps not enough of the stylo-hyoid ligament/styloid process are removed. That said, he needs to do what he’s comfortable with and it sounds like he’ll do a good job at that.
There are several members on this forum who’ve had complete calcification of the s-h ligament such that it connected from the hyoid to the SP creating on long bony mass ending at the skull. Dr. Samji has removed several of those - from skull base to hyoid. I’m unclear if that’s your situation. It would be optimal if your surgeon could fully remove the calcified ligament & the styloid process to prevent the opportunity for regrowth/further calcification. If he’d be interested in consulting w/ a more experienced ES doctor, he could always have a chat w/ Dr. Samji (he’s done over 200 ES surgeries at this point) especially since ES is of interest to him.

Based on what you’ve said, it does sound like you’ll be in good hands w/ him so I vote that you let him do your surgery. It would be great to have a new doctor on our list in your area.

I’ll keep you in my prayers!

:blush:


#19

Glad that you’ve found a surgeon you’re comfortable with, & don’ t want to spoil that for you…but I would encourage you to ask about taking more out, as Isaiah says, if it’s safe to do so.


#20

Looks like you are making progress. You may still want to push for total removal especially all the way to the hyoid, if your gut is talking to you and others are encouraging it.
No one can walk in your shoes ,because this is not a simple problem. I just had a redo of an intraoral. My first ENT performed a great surgery, removed more than an inch, did not have problems with the carotid, but I never got completely well. He took out the center and left the styloid at 3 cm and some of the stylohyoid.
3 years later, I was in terrible pain bilaterally, but the previous site was the worst. The styloid was growing back thicker and getting longer. The thickness was the worst problem. My skull base surgeon took it all out at the skull and the stylohyoid to the hyoid. After 10 weeks, I am looking forward, to removing the right styloid in a couple months as it is very problematic as well. Hindsight, I made the right decision both times.
You said it, God will be with you. I will be praying for you to get it done, be done with it, and heal completely.