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Eagle Syndrome - Online Support Group

Thankful for you all


#121

Different doctor w/ a different opinion on what works best. It’s thought that keeping the incision “moist” as it heals causes slightly slower healing but gives a better end result as far as helping the scar to be minimal.


#122

I drove yesterday for the first time in more than 3 weeks. Target, Walmart, Hobby Lobby…I think sjlash and I like the same stores ;). I got some cool hemp seed oil that contains coconut oil - I’ll start that on my neck. Seems more natural that petroleum jelly. I did just fine with driving. When I looked to merge ones I got a tingle at the sight but it died down after a minute. Talking to people was the hardest part. I was asked to repeat myself once but the lady was very nice about it. I told myself people in the world are generally sympathetic and friendly for the most part. That was at least the case for my outing. I was very happy to be home though. Made more soup and a Super Bowl cake and just still trying to not overdo things. Looking very much forward to my check up Tuesday. I’m not sure the left side click is going to “perform” for Dr. Dedhia but he’'ll likely take my word for it and we’ll discuss what all that means.


#123

A follow up thought on “how I’m doing” mentally. I stated above that I had my faith, a strong support system and medication for anxiety. I feel it’s important to stress another variable - I’m past the hard part. Being post-operation is a different place than “waiting, confused, scared, hopeless”. That was a “country” I visited for almost exactly one year when at the beginning of 2018 I felt my first symptom - “foreign object in throat”. My flight left that country on January 10, 2019 when I had my first side operated on. Now I’m sort of like in a “layover” - stuck at the airport between two countries. I’m not at my final destination, not totally healed. But I’m not at the previous country which was very smelly and loud and crowded :wink:. In general, the airport is not so bad. There are some decent restaurants and shops and I do love people-watching. I want very badly to be at the place I want to be. But we all know it’s a journey so I’m trying to enjoy my trip as much as I can. A very special part of this “in-between” was the first few days after the surgery. There is nothing like the realization that removing the SP or ligaments did in fact make a difference. For me it was not having the “click”. It was a precious gift to have that confirmation right away. I know not everyone has that instant result. I suppose in a way I’m grateful for my little click. Now you see it, now you don’t. But at 3 weeks now, I’m easily forgetting how awful it used to be. I’m trying to remind myself because it truly is wonderful to recognize the surgery was good. Especially when we have moments when we’re getting tired of the airport.:heart:


#124

SewMomma - You wax eloquent. I LOVE your analogy!! I hope your stay at the “airport” doesn’t last much longer and the remainder of the trip “home” is filled with many happy moments. “Aha” moments are good, too! As you’ve noted, they help us see how far we’ve come.

I’m so glad you’re back behind the wheel & beginning to return to a more normal routine. :blush:


#125

Hello friends! My follow up today was wonderful. Dr. Dedhia was so reassuring about the tongue recovery. He definitely noticed my speech right away and said that’s just part of that nerve getting strong again. So I’m not calling it “swelling” any more. He said to look at it as “weakness that will take time to recover”. He said it WILL calm down though and “lie like it should” so to speak after being a little bunched up during the invasion it endured.

So, phew. A relief. What’s big about that though is the timing for the second side. It does click and I do still have some swallowing “foreign object” sensation I’d like to see gone. He’s all for doing the other side. But NOT until my tongue is at about 90% normal. Nail biter - I want to have the surgery done this summer so I can put this all behind me. Praying for the best case scenario that by March or so I can get on the schedule for June or May. He did approve me for the surgery in the system but I have to check in with him before he’ll actually approve the date. We made arrangements to speak since it’s a couple hours drive for us.

Other details of the appointment:

  • He was genuinely happy for me that the click is gone. A surgeon that cares.
  • Says he doesn’t know why certain things (like my teeth not being sensitive on the right any more) happen but he’s happy for whatever parts of my life that improve
    -He said go ahead and massage it 3 times a day for 5 minutes
    -Always, always put sunscreen on the scar even if you don’t plan on going outside in case you forget
    -This was interesting - he and his resident said the only thing that has been proven to help with scar healing for sure is these things called silicon patches. I just found one called Scar Away on Walmart.com and they are little sheets you keep on all day. Bonus - that would double as sun protection too, no? Getting a box of those tonight.

Feeling grateful and relaxed about the tongue. Now I just need to be patient and trust that if it’s God’s will I can have the surgery by June. I know you guys can appreciate this - if i have it by June 30th it will be “buy one get one free” due to how our insurance works. I met my deductible with the first one so as long as I have it before our plan year ends, I will owe virtually nothing. Would be nice, eh?

A nice drive to Atlanta with my husband listening to 90s music on Sirius radio and eating cafeteria food while people watching. I told you I liked people watching! Just another day on my layover.

:heart::latin_cross::smiley:


#126

I almost forgot! He apologized he hadn’t sent the picture yet. Here’s my ligament. Not huge but boy was it a troublemaker. I don’t think calcification went up much further than this as it stops on the CT scan and my styloids are just tiny stubs.


PS - I’m pretty sure those words are the tools needed for the surgery, lol. I know “rasp” is what they use to file the edge of the ligament/SP that stays in vivo (inside you) so that it’s smooth. A peek inside an OR!


#127

One more thing I forgot! He called in a 6 day steroid for me. I still have a bit of fluid around the site and he said maybe the nerve will respond a little if that is all calmed down. Hoping, hoping. Started it as soon as we got back in town. So I’ll finish that up Sunday. Prednisone.


#128

Thank you for this update. So glad you had a great post op visit with your surgeon! I will be praying for the miracle of a “healed” tongue so you can have your second surgery in the time frame you’d like.

:blush:


#129

Thanks for the update! Glad that your doctor is positive about the speech & tongue, & hopefully the steroids will get some of the swelling down. And I hope that you do heal quick enough for that 2nd surgery! God bless…


#130

Thank you both. A little jumpy with the steroid but it’s nothing. Still think of my old click many times a day and how bad that ways. Baby click is there (I was SO disappointed it didn’t “perform” for him yesterday in the 3 swallows I tried - my husband had just felt it that morning and today of course it’s clicking away. Thankfully he said he trusted me) but it’s not terrible. Trying to stay busy and keep my mind off things. Easy with four kids. I’m getting the scar patches from Walmart pick-up tomorrow.


#131

I think you’re amazing, going through this & home schooling your 4 children! Hats off to you!! :grin:


#132

Thank you Jules. As hard as some days have been this week and last (tangents and cosines anyone???), the full days do help stop the “babble” I tend to do in my brain about my tongue not getting better. Having said that, I have most definitely had days where the babble takes over and I’m unable to think that clearly. That was September and October when I was in the “dark”. As I’ve stated before, the antidepressant kicked in and quieted some of the racing thoughts I was having about you know - dying from this thing!:laughing:
Homeschooling is a serious mental game I’ve learned. And having my kids around me is incredibly uplifting. Someone to complain to. Ha ha, kidding! Sort of :wink:!


#133

Continued prayers in your recovery!! Only up from here!!


#134

Thank you for the nod to how much that Mary Poppins song means to me! I got the piano book and the kids are playing that song :heart:


#135

Oh I remember the joy (& bewildement!!) of sines, cosines etc. I had to relearn some of it to help my boys with homework, but I don’t think I was ever very helpful!! Good luck with that one! :cold_sweat:


#136

Lol it helps to have the teacher’s manual :wink:

This morning I played around with putting some coconut oil on the scar for about an hour after my shower. Then I went to put on the patch and as predicted - no way it was sticking to the greasy oil. So I wiped the spot, I rinsed the silicon patch and even so - it’s still been falling into my lap off and on today. So I’ll probably start with a new patch tomorrow. Who knows what’s best. I can just vouch for the patches not sticking to greasy skin! :slight_smile:

All else is good, was able to enjoy some pizza on the left side yesterday. My tongue still looks like it has a giant knot in the middle of it but I’m still so grateful for the surgery and look forward to the next side when the time comes!


#137

6 weeks - it’s nice to be able to say that.
I feel good. Energy back. Mood is good.
My tongue is my cross to carry right now. It’s still curved. It looks pretty wicked to tell you the truth. My husband says he thinks it’s marginally better. No change in speech and things still get stuck over there on the right side of my mouth.
Last night let the record show that I had a “momma click” when I was positioned at this really weird angle when halfway kneeling/hugging my son in bed. I had a tiny panic it was from the right but then it did it again and with my hand on my neck I confirmed it was on the left. Can’t wait to have the left side done. Wish my tongue would settle so I could have a countdown like I did last time. I actually did schedule the surgery for May 30th because it’s the date I want very badly.
Counting my blessings, waiting on the Lord. Doing ok. Happy about the improvement from the surgery. Happy I’m up and about. Still haven’t exercised but that’s because I don’t wanna.:wink:


#138

Time flies when you’re having fun. I’m so glad it’s week 5 and not 6. Makes me feel SO much better! Thanks to the friend who pointed out I’m not at week 6 quite yet!!! :joy:


#139

TOTALLY FANTASTIC that you’re feeling so well at week 5! It took me 2 months to get my energy back after my first surgery. YOU GO, GIRL!!! The tongue will heal. Be encouraged by what your husband has noticed. I think sometimes our healing is more obvious to someone who isn’t living w/ the symptoms than it is to us!


#140

So pleased that you’re feeling good. Will keep praying that that stubborn tongue gets back to normal!