Hope it all goes well tomorrow x
I know exactly what you mean about your daughters heart surgery. I also have a daughter with DS and she had heart surgery at 4 months for tetralogy of fallot. They were hoping to get her to 8 months but that wasn’t in the cards. She had great surgeons at Children’s Hospital in New Orleans. She had surgery again at 12 to put in a pulmonary valve. She’s 17 now and doing great. I was much less nervous about my ES surgery than about either of hers.
Is your Dr going to do this intra or extra orally? I had my 1st ES surgery done intra-orally and the Dr was not able to remove more than a small piece of the tip due to contact with the facial nerve. I got zero relief from this. Several years later (this past August) I flew to San Jose, CA and Dr Samji removed the whole thing to the skull and also the ligament. The extra-oral route gives the Dr much better access to the SP. I have seen marked improvement in my symptoms and believe I am continuing to heal. I think I’m going to have to get the other SP removed in the future but I also need cervical spine surgery due to several bad disks causing bone to rub on bone and I think that’s going to have to come first.
Good luck and prayers for your healing. As we all know, ES is a nasty old SOB and is probably way under diagnosed.
Hi Eaglesnest! I did see your picture by your name. She looks sweet and joyful - like my girl. Children’s in Atlanta was fantastic and she had a very basic “a/v canal” hole so they sewed it right up. Now only an echocardiogram every 2 years. She’s 6 now and is looking forward to “ho ho ho” coming
Dr. Dedhia is going externally through my neck on my right side. My main symptom is “clicking” when I swallow so he said he’ll take out a minimum of 2 cm, maybe more to “untether” my hyoid and set it free! I need freedom from the click - please Lord!!!
I am on my way right now to the oral surgeon’s office who first discovered the “white shadow” on my dental x-ray. His software wouldn’t open at Emory so I’m going to take pictures of it with my phone. Emory has the CT scan from the diagnostic center but it was no fun for me to look at. So I’ll jump back on here later and share what I see! I need clarity on what it all looks like in there.
But I’m on the books for January 10th at Emory. It feels far away but I had to schedule past Christmas for “ho ho ho” to all go off without a hitch.
I’ll check in later!
I feel so much better after seeing those images. I’m at peace about it and can’t wait until January 10th. Starting with the right side as that is where the “click” can be felt. You can hear it now from the outside - it’s like a bone-cracking noise like when you pop your knuckle! I have to turn Christmas music up really loudly sometimes so I don’t hear it
My SP are unremarkable so I hope/pray just taking the ligament out will fix me right up!
Thank you all very much for sharing your own journeys!!!
I have SO much hope for you! I am going to be praying / offering it up in this recovery for you and the others working toward answers and treatment. <3
Turn up Christmas music very loudly hahahaha! Too good, too good. Yikes, though—some of the symptoms with this condition are just disconcerting even if they’re technically harmless.
You crack me up. I feel this. I felt this… “nercited”.
Merry Christmas to everyone and thank you Jules for the hopeful message about the new year.
I honestly can’t believe I’m now about two weeks away from surgery. From a day in September where I first learned “something” was wrong on my CT scan and weeks of worry and some despair…I am now rolling out cinnamon rolls for my kids (my ligaments “talking to me” each time I push the rolling pin) and I can see the finish line. I will make it through the final push of making Santa happen and I’ll blink and January 10th will be here!
I’m off the ibuprofen now to prepare for surgery and am getting used to the constant dull pain in my ears, neck and lower jaw area. I made it through one holiday meal last night with extra mashed potatoes and nothing too chewy. I’ll make an exception for one of my own cinnamon rolls .
Bless you all. I have pre-op at Emory on the 26th and will stay in touch as the date gets closer.
I have cinnamon roll envy! But not the neck pain envy…have a great day with your children & hope the time soon passes!
Me, too!! Cinnamon roll envy!! Haven’t had a good homemade cinnamon roll in a
L-O-N-G time!!! Enjoy the creation process & the consumption!
So glad you’re seeing the light at the end of the tunnel!
I want to share with my friends here that I am a week away from surgery! Four long months of waiting. Today my “normal” has been tons of lower jaw pain, clicking with every swallow unless I look straight up, a pain in my neck when I tried to play ping pong with my kids and fatigue when trying to store up a few meals for next week. But, I made it. God is good and one day at a time, Thursday will be here before I know it! Taking some Tylenol in the day and Tylenol PM at night so I can have 8 hours without the click. The antidepressant I started in September has me very steady and balanced right now which has helped with the waiting. My pre op at Emory was easy peasy. Got the wipes to do the night before and I know where to go/when to arrive. Made it through the holidays with Gods grace and my supportive husband and now 2019 is my year to tell my Eagle to go fly a kite. On a related note, the new Mary Poppins movie is superb, imho.
Yes, nearly here! Glad you’ve made it through the holidays…hope this next week goes quickly for you & will be praying for you
Hopefully, once you’re recovered from your ES surgery, you’ll become the Queen of Ping Pong at your house! Good for you for persevering & enduring all that ES has to offer. I’m so excited your “day” is almost here!!
Hang in there, only days away from surgery! Mine is on wednesday , so looking forward to it
Northstar, we definitely want to hear how things go. My kids are very fascinated with your part of the world so we checked and saw it was 30 degrees F there today. Hope nothing crazy happens this week with weather there that would make your trip to the hospital difficult
We Norwegians are used to cold, snow and wind, nothing can stop my trip to the hospital
Will keep you posted, god luck to you
I’ve been to Norway. It starts getting cold early there. We left to come home in August, & the nights were already below freezing. I guess that’s what comes from being so far north! You do live in a fabulously beautiful country!!
I’m excited for your upcoming surgery! You & SewMomma will be recovering “together”! We’re here to provide whatever encouragement we can.
Together - a good alternative to feeling alone
Absolutely true, that! So glad you both have family to see you through this!!
Good luck to you om your surgery SewMomma