Ate at a restaurant for the first time today. Was a little self conscious about ordering but the server didn’t seem to have a problem understanding me. Kept the food on the left side of my mouth and did pretty well with it. So that felt normal. Passed on the salad and went with soft foods only. My scar routine is: wake up and remove scar patch from overnight, massage for a minute with hemp seed/coconut oil, shower and rub all oil completely off, dry the site well and apply the patch again.
Still very very numb around the site. No change in tongue. Occasionally I feel the whole area is “hard” when I push on it? 5.5 weeks so it’s still so soon I keep telling myself.
I noticed when I talk that my bottom teeth get caught on my top teeth on the left every now and then - very weird. That tension needs to be released too (I love the words I’ve read on here that calcified ligaments are “chains, cords, ropes”).
When I lie on my stomach, I can get a really good “momma click” on the left - it’s creepy. So, I don’t lie down like that! Still taking Tylenol PM at night so I don’t get stuck in my head about the what-ifs (tongue never gets better, can’t get the May surgery date I want, etc.) and I feel so rested when I wake up so I’m sticking with that for now.
I have a goal of getting to the YMCA tomorrow to walk around the track. The irony - we joined in June and the click started in July. We’ve been maybe 4 times. I was in no place to exercise when I was figuring all this out last year. I was doing good to get upright each morning. Anyway I’m hoping for some indoor track time alone while my husband takes the others to areas for them.
You’re being really positive & that’s great! It’s brilliant tgat you felt able to go out & eat! And your routine sounds as if it’s working for you also, hope that the exercise goes well, & stay strong!
Exercise went great!! A stroll on the track and a minute or two on a couple machines - I did it! My 13 year old son was quite the encourager 
.
And a happy birthday to you! Hope you can manage some cake!!
You got this in the bag! You have just enough documentation to seem fed up and not willing to go through any more “wait and see” experiments. I hope your next visit goes smoooth.
Don’t be put off by the jumpy clicky jaw at first. You’re re-learning how to use some very vital neck muscles. Such as those involved with swallowing, speaking, talking, and resting positions. These are hurdles, but it’s just practice once you fix the bone spike thing.
These actions in your previous life probably took no thought or effort. But now you have to train.
It’s not hopeless. Keep working and it will feel more and more natural.
Hi friends! I’ve started to be more aggressive with the tongue and the incision site. Trying to be active to see if it helps at all but at the same time I don’t have huge expectations. More on the tongue exercises later. First, at almost 6 weeks - does anyone remember their scar area being “hard”? I’ll point to the area that feels hard. Thanks y’all! PS - the robe is back.
The entire area above my scare to my jaw is hard as a rock. Your scar s looking beautiful btw.
Hi there, thanks for saying so. I’m relieved you have the same hard spot. I’m certain it’s normal. Are you able to massage yours? Happy 6 weeks to you. How is the pain?
I hope the robe is only back because you were having a relaxing day & not a major healing setback!!
Lol, thank you friend. Georgia is cold today. Plus, don’t we all want to lounge around in our robe on our birthday? 
Hopefully the lounging will start when the kids are in bed 
. Goodbye 42…a long year of not knowing what in the world was wrong with my throat. Hello 43… a year of healing, trust and as my dear friend said - much spiritual growth.
Happy birthday. What a great feeling to be out and about again, huh? Love the positivity. Best wishes.
Today is 6 weeks, I’m sure this time 
!
Not where I want to be but not where I used to be is all I can really say.
Greetings!
Week 7 has been good. I’m feeling more and more like myself every day. There was a day last week (I think?) where I felt like a cloud was over me regarding my tongue never healing but luckily it passed and I’m generally optimistic about my tongue.
Which leads me to share that on Feb 18th, I started doing exercises to hopefully help my tongue along! Maybe that’s when I despaired momentarily, thinking it wasn’t going to work. It is not the most comfortable thing in the world but after doing it for a full week, I’m used to it and it maaaaaayyyyy be getting slightly better. My husband made me say that, lol - kidding. I think it’s the same but he said my speech is better and my tongue looks less and less wicked each day. As for me - I can report that I do in fact have an easier time with moving food around on the side of my mouth I had surgery on and I do agree my tongue looks marginally flatter.
The exercises I’m doing are:
-Sticking my tongue out and taking a large popsicle stick (craft stick) and pushing the tongue back in my mouth. The stick is positioned across my mouth horizontally like a “fence” and is resisting my tongue as I push the tongue out. Something Newton said about equal and opposite forces - that’s my son’s science for today swirling around in my head .
-With a dry washrag, I pull my tongue out and on the affected side, I gently stroke it with one finger to kind of make it flat (it’s got a ridge which is the problem).
I do each for 1-2 minutes 3 times a day. So far I’ve not missed a session so I’m hoping I can stick with it and report to the surgeon that there’s been great improvement so he can approve me for the next surgery. During these sessions I also remove the scar patch (that I wear all day and night) and massage the site for 5 minutes. This has gotten WAY more tolerable than it was it first. I don’t mind it one bit and can use a pretty moderate amount of pressure. Then I rinse the area with soap and water and put the patch on. The patches last every 2 days due to the constant removal but I cut them so tiny that I’m still on my first box.
Still thankful for the instant pot - I have about 10 things I love to make in that. Mashed potatoes were on the list this week - yum!!! But I’ve been able to eat more and more chewy things - I don’t push myself though. My son’s birthday is this weekend and he wants subs from our favorite sub restaurant and there is NO way I’m a)opening my mouth that wide b)going to be able to manage the bread and all that in my mouth. I may get one and cut it up into tiny pieces though because just typing this right now I’m salivating!!!
I wanted to share when I started working on my tongue so I can come back and post some updates. That is generally my ONLY issue post-op so I really can’t complain. The muscles under the scar are feeling more and more soft every day and I have feeling back on my jaw line from the outside when I scratch it! Woo hoo! Lower down from that toward the incision - still not much sensation but I do get zings alllll the time around there making me aware things are coming back. My tongue is the caboose of that train I suppose.
SewMomma ~
So great to read your awesome & positive update!
It’s your diligence in pursuing the therapies for your tongue & neck that are making the difference. Keep up the good work. The improvements will become more visible/obvious as the days pass. So glad you’re finding it easier to eat now, too. That’s a good sign that healing is taking place, visible or not!
Glad that there are improvements, & that you have your hubby to encourage you! Keep up the good work, & I hope you all enjoy your son’s birthday!
I love getting to read how well you are doing!! Continued prayers for you!! You give me hope that I may have relief some day!!
Yes, SO much better. Having had one ligament out - I can tell you how easy it is to isolate what is actually happening in my body now with a single ligament. What I’m left with today is:
-a faint click on the left side of my neck when I swallow. If you put your hand on it, you feel a “pop” under my skin. My kids love to feel it.
-a swallow that is not “smooth”. Foreign sensation describes it pretty well but it’s more like my throat is “open” or off somehow, like it’s just not smooth. That’s the best way to describe it. After I do my tongue exercise where I pull my tongue out - I have a a beautiful swallow. One swallow. That’s all I get. Then back to the weird thing. I pray and believe that my tongue is being held hostage by the remaining ligament and will once again be free when the left ligament is removed.
-when I pull out my tongue something fascinating happens - I hear a sound in my left ear (remaining side with calcification) a vibration! Sort of like a rumbling sound. It reminds me of the noise you would hear if your home was right next to a train track. That is my ligament saying “stop pulling on me!!”. No noise like that is heard in my right ear since that one is gone. It’s great to have these affirmations that neither of the ligaments were serving my body any more.
Wanted to share what was left after my first surgery. (pun intended “left side”)
Some details about my experience with an injection.
On Sept. 20, 2018 I discovered a study online about injections and TMJ. I was in my 9th month of symptoms and was really stuck in the TMJ arena since I had a sticker on my dental folder as a child that said “TMJ”. The click made absolutely no sense to me or any physician and no one could figure out why it was happening. I went back and forth between thinking it was TMJ or a muscle spasm. That was my primary doctor’s guess.
Anyway, the oral surgeon who took my wisdom teeth out 20 years ago was good enough to work me in that afternoon so I could go over the study with him. He was very intrigued and curious about the click. (that’s why I always say a curious provider is your best bet because they will put their thinking caps on with you) He read the study and was willing to inject exactly what it said. We agreed on a location just to the right of the hyoid since that was where the click was. He drew up the shots and injected two needles. I felt a pretty bad “zing” when he gave me the shots and I started to wonder “what have I done”?!!! Anyway, these are the procedure notes from the visit:
“A mixture of 1/2 cc of Kenalog and 1/2 cc of Marcaine (numbing and steroid) was injected into the right anterior belly of the digastric muscle.”
I sat there in the room and tried not to panic. The right side of my face, cheek, lip and neck where all numb. I took a deep breath and swallowed. Click. He came back in and said “Do you mind if I get a panorex on you? I really want to see what’s going on your neck”. That was my turning point. That man might as well have thrown a life-preserver out to me in the middle of the ocean right before I drowned. This is what he captured on his fancy 3-D machine and I took a picture of it with my phone. You can see my styloids are nubs and my ligaments are calcified about 3 cm up which is what I’ve had removed on the right. This angle is the left (remaining - for now) side.
So as you can see, no shot was going to help me! I felt zero relief. No change. None whatsoever. He was so encouraging and said “I’d go to either Emory or UAB (University of Alabama) because teaching institutions usually see more rare cases like this”. He’s in his 60s and said he’d never seen calcified ligaments before. I came home and my husband typed in “calcified ligaments in neck” into the computer and then I went and sat on the toilet lid in my bathroom with the door closed (parenting, am I right?). I paged my local ENT who had looked at me and scratched his head about the click for months. It was Thursday and they don’t work Friday. Wasn’t waiting three days to talk to him. NO WAY I was waiting to get an appointment to see him. He was on call and called me back. His tone wasn’t the best that I’d paged him but I’ll give you one guess as to whether I cared or not. I told him about the ligaments and Eagle syndrome and he said “it’s possible” but then said not many surgeons are capable of doing the procedure. I thanked him and the next day called Emory and took the earliest appointment with either of the two doctors that treated ES.
As most of you know, I waited for the October 10th Emory appointment with great anxiety. There were days where eating one bite of a pancake for breakfast was nearly impossible. I was scared and afraid and in the “why me” stage. I was hanging by a thread when the Emory physician walked in the door and I just said to myself “this is it, you’re leaving with a surgery date”. Then he said “you have too many symptoms to be Eagle syndrome”. Turns out I’ve learned he discredits calcified ligaments and only diagnoses if elongated styloids are present.
Downward spiral is what followed. I somehow shuffled around the house, kept homeschooling and trick-or-treated with my kids in a haze and made it to Nov 13th for that second opinion. Two months later - click free.
Boy I’m so glad I’m done with all that. Thankful for the rainbow after the storm.
Almost week 8 post op from my first side - happy to say I can now pretty much eat on the right side of my mouth without sticking my finger in to move the food around, lol! I think it’s a combination of the exercises and time!
Anyway a big moment for me this weekend is that I ate the sub sandwich! I cut it into tiny pieces and ate it with a fork but do you think it tasted any less yummy? No! Oil and vinegar makes everything right.
The speech is still messed up. “Did you” comes out “dichu” and other fun things like that. And it’s still a little curved. And there’s a ridge on the right side of the tongue still. But it’s getting better. It is. I ate a Blimpie turkey and provolone as proof! And pancakes tonight for Shrove Tuesday! My Lenten sacrifice is to not worry about my tongue.
That’s great that things are improving! Glad you can eat a bit better, & well done for sticking with the exercises!