We need you, too!
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Hello! I am 3 weeks post-op now and things are inching along. I’ve been wanting to share about my follow up Tuesday.
I’ve been waiting for this day to come so I could speak to Dr. Dedhia and get some encouragement. I was very scared when I woke up Tuesday that my questions about my lingering swallowing troubles wouldn’t get answered. Knowing he was leaving Emory in 2 weeks really stressed me out. I tried to push fear aside and just keep moving until the appt. at 3:00. Finally we were there and he was so friendly and warm when he greeted us.
He wanted to know how I’ve been since I contacted him in the portal a week ago. I told him I felt really happy about how the whole thing went overall and sometimes I have the swallows I’ve been missing this past year and a half. But I then shared the frustration with these other clicky ones that still happen. He was very good to feel around (gently) and he asked me to swallow to get it to click. It did click but he didn’t feel it. He could feel it before surgery so we agreed it’s more faint than it used to be. He said I’m still SO swollen – you can see that my neck from the outside is still not the right shape. He said let’s try a 5-day steroid pack. He then said “I’m not worried”. I told my husband to record that and play it back for me! 
He said I didn’t need to ice any more which was good because I was getting tired of wearing my ice neck-wrap all day off and on.
I went over things on my list like telling him the “seal” of my throat feels awesome now when I swallow. Something I always had trouble explaining to people as one of my symptoms. I then asked about the surgery itself and if the edges were all smooth and if there could be any other cause to the snagging still. He said my click was the swelling pushing things into the wrong area. I showed him some pictures in the Eagle syndrome photo album I’ve made. (I’m a child of the 70’s what can I say - I ordered photos of all the scans and 3D images I’ve ever gotten.) We looked at my anatomy and he said the greater horn of the hyoid (larger part that goes back toward your back) can snag on anything including the spine which surprised me. So mine is getting pushed around by the swelling which is creating the same result that the ligament created which is why I’ve been so worried after surgery. I asked if I needed the other part of my hyoid cut and he said mine looks as normal as they come and he’s had a patient before with a hyoid that wasn’t the typical shape. He said with the swelling going down soon it should all “settle” back to the middle of my throat. I got teared up and asked him if I could still be his patient at U Penn when he moves there and he said absolutely and told me how to contact him. So that put my mind at ease.
I told him how important it was to me that I get back to 100%. I told him I was worried that I was going to have to start on this big investigation again about why I was still having that click when I swallowed and after all I’ve been through that made me really scared and worried. I said, “I need to be ready to homeschool my kids again this fall." I was hearing my own words and thought how far away fall was so I added, "Do I need to just calm down and give it more time?” He said, “You need to calm down and give it more time.” 
He said, “You are very self-aware, that’s great.” My husband then added “Yeah, it doesn’t help”. We all laughed. He then added, “I know it’s hard, expectations are there.” So true.
We brought a gift for him. It was a painting our son did for him. He really liked it. He then shared a parable he likes. The short of it is: There is a wise Cherokee Native American father and his son. The father tells his son there are two wolves inside us all and they are fighting with each other. One is a bad wolf - full of anger, envy, worry, sorrow, anxiety, self-pity, and ego. The other is good - full of joy, peace, love, hope, serenity, humility, kindness, empathy, truth, compassion, and faith. The boy asks his father, “Which one will win?” The dad replies, “The one you feed.”
He said I’m going to be fine and it’s all going to be just great. He said to tell myself that and to “feed the gold wolf”. I assured him I would and I told him I was going to stay on the Celexa until I felt like I could cope when this was all over. We had a nice goodbye. The whole thing was just super emotional. I made it down the hall but then the waterworks started. A woman on the elevator flashed me a sympathetic look. It was such a release. Is this all really about to be over? A year and a half of uncertainty, fear, a terrible experience at Emory then to come back and have such a wonderful experience with a second doctor? He was like a living saint to me. It felt like we were leaving sacred ground. A hospital is sacred ground in a way because of all the prayers that go up while there! We got in the car and I drank a shake I had put on ice. My husband said I needed more than that so we shared french fries from McDonald’s to celebrate a little. 
We got home and fed the kids and collapsed on the couch.
So, my check-up was good. I was able to thank my surgeon for the wonderful job he did and I got reassurance that healing was happening. I am trying to ignore any bad swallows. Stuff is still settling. I’m trying to go with it and…feed the good wolf.
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So glad you had such a good appt. with him- he sounds a lovely doctor. You should’ve recorded the whole thing to give you reassurance when/ if you doubt again! Love the story of the good wolf, I’ll remember that!
I hope that the swallows settle & that the steroids help with swelling, I’m sure you’ll be back to being an amazing teacher in the fall!
SewMomma - I have tears reading your post…I am so happy for you. No doubt he is your advocate angel and all that has happened, even though it has been so very hard, was meant to be. Your gratitude is palpable and so heart warming, I know your surgeon was moved too (just didn’t show it) and will cherish the gift from your son. I have heard that parable and LOVE it - thank you for reminding me again of such a beautiful lesson that is so true. For now rest well, know you are being healed by loving hands from above, below and all around💜
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SewMomma ~
I love how thorough your updates are! I love that you don’t put on “a pretty face” when you post on this forum. It’s easy to make things sound like they’re ok when they really aren’t. I love that Dr. Dedhia “loved” you by encouraging you, being patient, being a good listener & sending you off w/ good practical advice so you can go forth & heal with a positive mindset. God is in that mix. He knew what you needed & provided it. It was your gentle hug from Him.
And, here is a gentle cyber hug from me to you, as well.
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Thank you, friend. Starting day 3 of the steroid. I can see a little difference in how my neck is looking. Keeping that positive mindset, like you said.
I went back and looked at my previous surgery note here (very helpful) and saw I didn’t start massaging the area until a month after surgery. That’s good because I still really don’t want to touch it/push on it. Maybe in another week or so.
Just gonna try to have a good weekend, wait, be thankful and bear this transition with as much grace as possible.
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Today was two different days. I woke up and felt like a bee had stung my neck at my incision site. Weird! It was this sharp stinging, burning feeling. My husband then noticed how much my swelling has gone down from the outside. So I think the steroid is shrinking the area and I felt some tightening! That or nerves waking up. Anyway I had a low key morning, it died down then around 4:00 today I felt the best I’ve felt in 3 weeks since surgery! Good energy, good swallows! I made dinner for my family and went around and cleaned some bathroom sinks! I was quite grateful. The snagging, clicking has been minimal today. 
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HOORAY FOR steroids doing their job! 
Looking forward to more good reports in the coming days!
SewMomma,
Just a word of caution…please take it slow. Steroids are amazing for making you feel like Wonder Woman but any good doctor will tell you it is a band aide to help calm things down enough to stop the inflammation cycle. If you over-do in this time you will quickly come crashing back down once the dose is complete (and you don’t want to be on them for long!) Please take it all in stride and let the steroids do their magic for the big picture (sinks can stay spotty for a bit longer, just dim the lights as someone mentioned on another post!) 
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Wise! Thank you! I have tons of reading to do this weekend and then gonna take the kids to see a movie. Lol on the dim the lights thing. Thanks gal.
Funny thing (or NOT!), one of my main side effects from Prednisone is hyperactivity. I can’t stop moving when I take that stuff. It does it’s job but I don’t sleep or sit still during its course. My brain races, too, so my thinking gets befuddled - that’s even w/ short-term use. I’m thinking that’s part of why SewMomma felt energetic today, but you’re right - MUST…TAKE…IT…EASY…!
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Yep I’d describe it as a burst of energy.
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Agree with JustBreathe, easy to feel great & overdo it! Lol, love the dim lights idea, think I’m going to draw all my curtains…
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Hallo, I am writing from Italy i apply to this site some months ago but I had severe pains and never wrote. I was victim of strangulation with fracture of hyoid bone stylohyoid. The stylohyoid is 5 cm and formed pseudo-artrosis with fracture interruption. The fracture is bilateral, with calcification ossificato. I need to know a surgeon that can surgery me in this condition. Nasal cavities are esssicated and I suffocate.
Pls can you help me. Thanks
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Hi mariatab -
What a sad story you have! I’m sorry you were treated so poorly & now have these big problems as a result. Here is a link to the Doctors’ List for countries outside the US. There is one doctor in Italy who has done ES surgery on someone from this forum. I hope that doctor can help you!
https://forum.livingwitheagle.org/t/doctors-familiar-with-es-countries-outside-us/4753
Please let us know if you see him & if he can help you. I’ll say a prayer for you to get the help you need soon.
Sending you a hug! 
I had practically a click-free day today! I had one when I woke up but it never came back. One more steroid pill to go tomorrow. I’m finally optimistic.
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Wishing you well in your recovery x
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Hi SewMomma,
I am so happy to hear that your are finally optimistic. I am not there yet, but your optimism is infectious!
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Infectious optimism is our game! I’m glad you’ve gained encouragement from SewMomma’s post. Trust me when I tell you, the healing days feel long and slow, but bit by bit, you’ll notice symptoms & pain subsiding & disappearing. As time progresses, you’ll get these little “gifts” day by day as you notice something else is no longer bothering you. 
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Yesterday was great - I am smiling when I eat now. I still have a little tiny, faint click once or twice when I wake up but then it’s non-existent the rest of the day!
My throat feels “straight” if that makes sense. Food goes to the back of my mouth, then my muscles and tongue all work like they should and I swallow the food without pain, fear, uncoordination, coughing or clicking. I’m swallowing normally for the first time in a year and a half! It actually feels smooth and closed when I swallow. When knew I would be analyzing a natural thing like swallowing one day but it was SO messed up with the ligaments in! I’m thankful for all of you who understand that.
I still have a fat neck and I don’t want to massage the scar yet. I slather some hemp/coconut cream on it each morning and leave it alone. I wear a scarf if I go out. I think the steroid did the trick to get things to settle down inside my throat. The click was driving me crazy. I was so happy to get rid of it after the first surgery in January. The fact that it came back after the second surgery in May was pretty scary. Messed with my head BIG time. I didn’t like that 2 weeks of feeling like I was going backwards.
I guess what I’ve learned is to give things time and not over worry when things are healing. Do you think that helps me in the moment though? 
Here’s a brief list of how I got through these past few weeks (aside from God carrying me). Maybe a doctor could include this in his/her post-op instructions 
Cough drops
Pain meds you can take when you feel like you need them
Ice packs
Steroid for swelling
Big tumbler of ice water
Soft foods/soups/shakes/other things you like and really shouldn’t eat alot otherwise but who cares (hello Jello chocolate pudding)
Naps
Long hot showers
Comfy spot on couch
Good books
Good shows to watch
…this website
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