Well, I overdid it today. I’m ok. It’s all ok. It was 8 weeks and it had been so long since I’d had my macaroni and cheese. I made it for lunch. I haven’t chewed that much pasta since surgery. Plus I had made a loaf of wheat bread this morning too. It was hot out of the bread machine and smelled SO good. Who could blame me for trying? Just too much chewing. The mac-n-cheese sounded like it had peanuts in it when I chewed it…my jaw was popping like crazy with each up and down movement. BUT, not on my right (surgical) side - just my left! It was so exciting to actually have proof that removing my right ligament made my right jaw better!!! No jaw popping on the right whatsoever. The left must go! SOON!
By the time dinner came around I thought I was feeling better so I made pancakes (my favorite dinner) and I knew from the first bite that I was going to be in pain. My poor left jaw was so sore from lunch. My tongue was tired. Even the little frenulum under the tongue was begging me to stop eating. That little thing hurt! But the pancakes had pecans and dark chocolate chips in them so I ate all 6 on my plate. Burp. Oops, excuse me.
You make me laugh so often! I always know to search your posts when I need a good laugh, SewMomma. Thank you for this update. I want some of those pancakes. They sound amazing!!
The pancakes sound amazing! Maybe worth a bit of pain?! I love nuts & couldn’t eat them for a long time, actually they can still make me ache a bit but nothing like the pain of before! Thanks for the lighter note on here!
Thanks to my food processor, I could make the pecans into almost a powder for the pancakes - such a good flavor.
My tongue is looking really good this morning! It’s almost flat! I can definitely eat on the right side again. The speech is still off - but it’s certainly not as bad as it was. I trust it will be back to normal one day. I also have a little more sensation around the wound site. Still feels a little weird but I can feel my fingernails a tiny bit when I scratch there.
This morning I focused way too long on the left click while lying in bed. As I was feeling it, I swore I felt a click on the right. It did it like 3 times. But as I stood up and adjusted and had my husband feel it, we determined the click is coming from the left but you can just feel it on the right side of the hyoid when you’re touching it. The original right-sided click is LONG gone and was more like a bone crunching noise. This is very small and faint. I share this to say even after confirmation and compete certainty that the surgery worked and was 100% effective…even I can still have self-doubt. These symptoms and this part of the body is so complicated and swallowing is such an intricate process…it can all be quite confusing and mind-boggling! I calmed down, returned to my happy place and am going to focus on the next surgery. Now that my tongue is close to 90% resolved, I expect the surgeon will approve the left side surgery in a couple months like I had hoped.
One more update: last night at mass we happened to sit behind the very first doctor I went to in June 2018. All I had at that point was “trouble swallowing”. The click didn’t show up until July. This was a gastroenterologist. It was a negative experience to start my journey of getting people to believe me that I actually am an expert on my own body. He didn’t spend much time with me and said something with the word “globus” in it and gave me an Rx for acid reflux and had me schedule a swallow study. You’ve heard it all before.
Anyway I never went back to him once as I eventually found my way to the ENT field and my surgeon. Someone had asked on here once if we ever had a chance to go back and share with a doctor who had dismissed our problem. I decided to speak to him since he sat RIGHT in front of us. I said hello and briefly stated that I had discovered what was going on with my swallowing after all. I said I had a calcified ligament that was affecting my swallow and it was removed at Emory and that it’s called Eagle syndrome. He only half turned around to look at my neck and then said “Huh, never heard of that.” His wife was more interested in the whole thing than he was.
I sort of looked at my husband like “what was that?” and he whispered “What did you expect?” because his bedside manner at that June appointment and just his disposition in general is sort of just - flat. I whispered back “Why did I just do that?” My husband squeezed my hand and said, “You did it for all the eagles out there, babe”. Then the song after communion was one of my favorites - “On eagles wings”. THEN we went out to eat and a bus of softball players pulled up and the restaurant was flooded with college-aged girls in their uniforms. They were from Iowa for a tournament here in town. They were…the EAGLES!!! My family and my mom who was with us all toasted our drinks to “all the eagles out there”.
Great story, SewMomma, but I am sorry for the response the doctor gave you. As a doctor one would have hoped he would take interest in something he’d never heard of. It’s his loss. So glad God affirmed you through your husband, family & the softball team!!
Doing good still - tongue still has a ridge but at this point it only affects my speech…not my eating!
Left click is GROWING! It’s like a baby in there I tell ya. It’s getting stronger and when I lie in bed on my left and swallow - CRUNCH! Just like the right used to do until it went under the knife.
It’s good in a way because I need the affirmation that the second surgery is the right move to make. We all have doubts sometimes about medical choices and I didn’t want to wonder if I should do the second side so soon. Hoping in a couple weeks I can report back that the doctor thinks my tongue is good enough to schedule the left this summer.
Keeping up the tongue exercises and I keep the silicon patch on 24/7 aside from showering and a brief massage 3 times a day. Those patches are awesome.
Thankful for a fruitful Lent of waiting and patience and thankful that my kids get so excited about college basketball. It’s a chance for me to sew. Lol!!!
Glad that things are improving with your tongue following your surgery… And I know what you mean about wanting to be sure about having surgery. I wasn’t sure if my 2nd side was bad enough to need surgery, but it did worsen after the 1st one was out, & also knowing how hard it is to find a good doctor, when I had one I wanted to do the surgery before he moved, or left etc.!
Exactly - I alluded to the fear of good doctors making a name for themselves then moving on when I first met Dr. Dedhia. He is young and awesome. He said something like “you never know”. He has assured me he will be around at least through this summer though. Phew.
Interesting. I wonder how many folks have had to change doctors mid-way between both sides. There’s something to be said about staying with someone you like and are already comfortable with. If possible.
Happy Sunday to everyone. I’m very very thankful this week is spring break here for our home school. We need some time off here after coming back from Christmas jumping right into surgery and then cramming lessons in over the past two months. I need to regroup and start getting ready for the next surgery!
Speaking of - my main task this week is to reach out to the surgeon and show him my tongue has improved dramatically. It’s no longer crooked/curved. It’s flat. And I have zero trouble eating on that side. I still have a tiny, tiny slight issue with pronouncing some consonants but my family says they don’t even notice it anymore.
So - onward! My left side is talking to me. I have fullness in that ear, popping in that jaw when I chew and for the past few days - I’ve had a unilateral sore throat! I didn’t know such thing could occur! My throat hurts when I swallow - only on the left. I can’t wait to get that ligament out! I had trouble with some orange juice this morning kind of getting away from me when I swallowed so I had to just “gulp” it down and I coughed for a minute. I am fighting fears that this particular symptom will not get better after the second side is done. That was my very first symptom a year and a half ago - lack of coordination when swallowing. It has to get better, right?! It’s humbling that I can give out good advice to everyone about trusting the process but then I get stuck in my own head with negativity. I think it’s just human nature to protect ourselves from disappointment. Hope for the best, prepare for the worst is how I’m looking at the second surgery. But it’s not up for debate whether I’ll have it done. I’ll let you know as soon as he responds back in the patient portal after seeing the improvement in my tongue.
I discontinued Tylenol PM last weekend and I’m so happy to share that I’ve slept pretty well without it. I switch sides if I am bothered by the bone-crunching click on the left when I swallow and I redirect my thoughts to how much better I felt after the first surgery. I’m very glad to be off the sleep aid. I will remain on the anti-depressant indefinitely for now.
I’m thankful I’ve been able to have Doritos with my kids this weekend. We had a bit of a March Madness basketball party yesterday and I felt very normal. I appreciate the good in all the little simple moments now. I had so many hard days with this…I just want as many ordinary days as possible.
I think we’re all good at encouraging others, but don’t use that encouragement for ourselves! So I’ll do it for you- surgery should help with your swallowing, and choking, & weird sore throat…if it doesn’t take care of all the symptoms then there’ll still be less to cope with & you’ll be strong enough to cope with what’s left. Without surgery it’ll likely get worse, so any improvements, even if small will be a brilliant bonus!
You’re strong, I’ve said before I don’t know how you’ve managed with ES symptoms & surgery, when you have young children & home school them! Well done to you & keep praying, don’t let those doubts and fears take over…‘For God has not given us a spirit of fear, but of power, & love & of a sound mind’. Trust Him
So hoping & praying your surgeon will be delighted to do your second surgery in May as you hope. I think your post op progress has been phenomenal, SewMomma.
Great news - Dr. Dedhia did indeed like how my tongue looked and I am on the books for May 30th!!! I feel a HUGE relief. The tongue isn’t 100% but he had said at my follow up he was looking for a 90% improvement. So that confirms how much better it has gotten!
Amazingly, I just got a letter from Dr. Dedhia stating he is indeed leaving Emory! He wants to be closer to family and will be working in Philadelphia!!! Philly will now have two ES seasoned physicians! He will be missed at Emory and in the state of Georgia!!! I feel extremely lucky - and that is an understatement - that he will be doing my second side at the end of May, I will have a follow up the middle of June and he leaves Emory as of July 1st. I get chills thinking about the close call and possibility of never meeting him and how God orchestrated my diagnosis when he did. Just in the nick of time as they say.
That is soooo AWESOME, SewMomma. Yes, God always has a good plan for us. Jeremiah 29:11 gives us that promise: For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
I’m sorry Georgia is losing a great doctor but hooray that Philadelphia is gaining one. Maybe ES surgeries can happen more often with him there as Dr. Cognetti’s ES surgery schedule is very limited.
Greetings everyone. Recovery is approaching three months and I’m really thankful for how far I’ve come. My tongue is absolutely straight but for whatever reason I still can’t really pronounce “s’s” very well. I pray God will continue to heal that but I’m fully prepared to accept that small token as a permanent result of surgery if necessary. It’s just too soon to tell. I’m pretty happy with how much feeling I’ve regained when I go to scratch around the incision area. Just the other day I had sharp shooting pains around the site so I know there is still healing occurring.
A small thing that’s been bothering me that I want to mention. Hopefully one day I’ll go back and read this and it will have gone away. The first few times I brushed my teeth after surgery, when I’d spit, I noticed a pop on my right side around where the surgery was. Just slightly above the incision where my remaining ligament stayed in. There was very little calcification beyond the 3 cm that he took out and he decided to stop there to be safe. I’m still pleased with his conservative approach but now I feel that pop when I yawn. It’s pretty upsetting to feel something on the right side after having gone through surgery but it doesn’t happen when I brush my teeth anymore so maybe this will stop too. I don’t know if it’s even related to Es or something else in that area or even still part of the healing. And I certainly could live with it. But I’m really hoping it goes.
Another thing is is I’ve had four or five pretty good size bumps on the back of my tongue on the right side (surgery side) since the surgery. I feel them when I massage my tongue. No clue what that’s about.
But I’m definitely eating and getting by with the pain on my left side. Wake up pretty uncomfortable but I just have to make it to May 30th.
Peace to you all!
I still feel like something catches when I yawn, which I’d presumed was an ES symptom, but I didn’t have any calcified ligaments & styloid removed to skull base so I live with it, all the horrible symptoms have gone, so I’m grateful for that! I guess if you have a small amount of calcification left it could be that, only time will tell.
Not sure about the tongue…
to do your second surgery in May as you hope. I think your post op progress has been phenomenal, SewMomma.
answered!