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”!!!