Eagle Syndrome - Online Support Group

Thankful for you all


YAY for the Instant Pot craze! I gave my husband one for Christmas (he’s a much better & more adventurous cook than I). He’s made some yummy meals in it including taking a stab at yogurt making last night. I haven’t heard the results yet as I just got home from being gone all day & now he’s at work. It’s supposed to be a wonderful device for making all kinds of things & better yet, quickly!

So glad to hear about your mostly pain-free day & supervising is a great place to be while you slowly build your stamina! Glad your van is cleaned out!


Jules -

:rofl::rofl::rofl: I’m with you on that one! Would have loved to have come out of ES w/ a glorious singing voice (after going into it w/o one!!).



I’ll let you know when I try it out. I’m alone with my kids this week for the first time. My absolute focus is to have a breakfast and lunch of things I can’t choke on. Tonight I had chili and had to kind of “hock up” a kidney bean that got to the back of my tongue without being chewed first. But then I had a slice of pecan pie my daughter and I made together today so don’t feel too sorry for me :stuck_out_tongue_closed_eyes::stuck_out_tongue_closed_eyes::stuck_out_tongue_closed_eyes:


I hope your “pilot” :airplane: week goes perfectly! I’m sure you’ll do fine w/ eating. Just keep your bites small, & as you’re already doing, be careful to make sure you eat things that are easy to chew. Old habits die hard w/ eating, & it’s easy to mindlessly grab a bite of something you enjoyed prior to having tongue disfunction only to find out it’s not as easy to eat as it once was. Your tongue WILL heal & you’ll also adapt more & more to it’s funkiness :thinking: of the moment.



Thank you! I’m thrilled to say I felt good today. Not marathon good, but better than I had felt. I felt bad last week that I still wasn’t that “peppy” but it turns out I really just needed to listen to my body. An early bedtime last night had me up in time to get everyone going today and we got it all done! I am feeling more normal now that I’m entering week 3. Thanks be to God. Sorry I used the word peppy. You can take the girl out of cheerleading but… :crazy_face::crazy_face::crazy_face:


PEPPY is a great word! Never stop using it!! :rofl:


I love reading your progress!! Your story about your child and scars is precious! Speaking of… there’s a song that seems to be in heavy rotation right now called Scars by I Am They. It’s beautiful. Worth a listen. Being thankful for the scars of Jesus but also being thankful for the scars we have. Whether it be emotional or physical, when we get through something tough, it makes us appreciate things we might not have before. I know (and I have faith) when I am able to sing again I never want to take for granted the voice that He has given me.


I’m going to find that song! :heart:


AWESOME SONG! Thanks for the heads up. I watched the music video (always like to see the musicians singing their songs!). I haven’t heard that one on our local Christian radio station yet, but it’s hard to get a consistent signal so I only listen intermittently.

You will sing again!


Feeling grateful, focused on the good things only right now. Click is gone, Beatles is streaming in the kitchen and I’m waiting on a lentil soup in the Instant pot! I get a little frustrated when I struggle talking but maybe there is a marginal, and this is a stretch, tiny improvement in how I sound? It’s Wednesday and God is good. Those things I know for sure!


Good on you, keep positive! :grin:


A little update for today. I feel great. I do not feel like I had surgery 3 weeks ago. BUT, I do not leave my house. I move around in my robe (I just can’t take it off) and don’t exert a ton of energy. Mental energy-yes, vacuuming-yes, cooking-yes, Pilates-not yet. And I had to find a replacement for a speaking engagement my husband and I had next week at church. I can’t stand up in front of 20 engaged couples and tell them about “for better and for worse” and them not be able to understand me. Talk about “for worse”! Ha, humor.
Tonight I made fried rice in the pressure cooker and had no problem with that. A couple things I wanted to note. One is a “maybe” benefit of surgery. For approximately 5 or so years I’ve had really really sensitive teeth. Back molars specifically. I love ice water through a straw and sometimes it would just be too painful to drink. Did sensitive toothpaste (still do), talked to the dentist (could be sinuses, etc.) and nothing helped. Well I must say - I have zero sensitivity on the right. A few day after surgery I sipped a very cold ginger ale and shooting pains went straight to my top and bottom molars on the left but I felt nothing on the right. It hurts to brush my left back teeth now, not the right (it always hurt both - cold water from faucet you know). I’m so excited. BUT it could have everything to do with the fact that I’m still numb over there. But if the 12th cranial nerve (as the surgeon stated he encountered) was being squished by the ossification that is now gone and that is what caused the teeth pain…that would just be a giant bonus to all this. But like I said, sensation and sensitivity may come back with time. I’m still completely numb on my jaw line from the outside. No feeling at all. But I am enjoying sipping water on that side for now. But then I cough when I can’t control it. Sigh.
Speaking of nerves - just a little while ago I got my first “zing” along my jaw line. Lasted about 60 seconds. I said hello to my little nerve that woke up and thanks to this support group I knew it was a good thing. :+1:
Thankful for almost being through my first week on my own, thankful for a good heater in the house and thankful to be at week 3!


A thankful heart is a happy heart! Thank you for sharing your happy heart thoughts w/ us, SewMomma. I continue to be blessed by your attitude & I’m sure others are as well. :grin::heart:


Thanks for your updates, & good news about the tooth pain. I have pain in a couple of molars, it’s improved since surgery, but not gone completely, so surgery can make a difference with the Trigeminal nerve.
Keep on healing!


Thanks to both of you. Just to keep it real on here (for those of y’all that were born worriers like me) - my worst day in all this was October 10th. That was the day I went to Emory with my clipboard, notebook, CDs, reports, lists of symptoms and entire family (husband and four young children including one with a disability) in an oncoming hurricane (we needed to be home by 4:00 and the appt was at 1:00 2 hours away). From the second the doctor walked in, it was a compete disaster. He said “This is not Eagle syndrome” and he refused to feel my click. Who does that? After 10 minutes of telling me I had too many symptoms to be ES and the surgery had risks and he’s only done a few of the procedures and nerve blah blah and recovery blah blah…a WAVE of something came over me. I got hot, I started sweating, I got pins and needles in my arms and legs and my husband came out of his chair because he said my lips turned white!!! The doctor said something insensitive to my husband like “Is this normal for her?” and my husband said “No it’s definitely not”. Luckily he did recline the seat and I started to fan myself with my notebook. My face was so cold when I fanned it because it was wet - it felt really good. I said I felt nauseous but luckily nothing happened. After about 90 seconds or so, it passed. I gathered myself and he walked to the door and said “I’ll do the surgery if you want but that click will not go away, you need to see if maybe your hyoid is snagging on your spine or something. Give me a call if you want me to remove the ligament anyway though”. Yeah right dude. K - bye.

The funny part of that story was there was a sign in the lobby when we got there “Fire drill at 1:00 p.m. today”. So basically there was a loud siren going on during most of the appointment. I don’t think I’ll ever forget that day even if I tried. I just wrote an essay about it (I’m a freelance writer) and said “Sometimes when things seem forced, there is a reason”. I believe God prevented me from using that surgeon for lots of reasons - I’m ok with that now but on that day it was massively disappointing as I’m sure you all understand. So I reached out to my primary doctor and told her how I was having trouble coping/concentrating (homeschooling that month was interesting - lots of “couch school” where the kids would bring their books and sit next to me) and she said let’s start an anti-depressant. It kicked in after a couple weeks and got me to my second opinion appt. with Dr. Dedhia in November and I truly believe it has helped me not totally freak out about my tongue in recovery.

So my happy heart (love how you said that) is partly my faith, partly my wonderful support system (including this site!!!) but a bit of it is definitely the chemical help I’m getting for the moment. Not going to think about going off it until this is all wayyyyy in the past. Second surgery, healing, etc. Then who knows if I get off it even at all or go back at another time. I’ve learned to not think that far ahead about things I can’t plan.

Seeking answers to a medical mystery is tough. It sucks pretty bad. But I am growing (ouch) and God’s grace is abundant. You will probably all have a “rock bottom” moment with this and to quote the final song in the new Mary Poppins movie there will be “Nowhere to go but UP”!!!


Robe update: I did not wear it today. Ended my 21 day streak. Woo hoo!
Instant pot update: I’ve made two things a day. Today was two different pastas, nice and soft.
Wardrobe update: When I got the robe, I noticed Lands End made tops that were the same material as the robe. So I got one and put it on today. A gentle weaning from the robe! Here is a 3 week scar pic with the instant pot and above-mentioned pullover in the shot as well. (Bonus: it’s a turtleneck!)


Thank you, SewMomma, for another great post. For all of you awaiting surgery, a neck scar initially looks “ropey” like SewMomma’s, but there’s GREAT NEWS! It flattens out & disappears as healing continues. See my picture below. I’m 4.5 yrs out from my first surgery & 4 yrs out from my second.


I can not even believe how good your scars look! Thank you for sharing, mine is definitely bumpy so I was wondering. :heart:


Dr. Samji recommended using Mederma w/ sunscreen & keeping the incision out of the sun for at least 6 months post op. I don’t know if the Mederma helped or was a placebo but I’m very happy w/ the outcome. :blush:


I’ll be doing that for sure. Dr. Dedhia said do a month of Vaseline before Mederma. What do you think that’s all about?