Daryl, you have quite long measures! And Dr Omlie works closely with Dr. Cha—I did not meet with her but he spoke of her to me yesterday and she really sounds like a great doctor.
I’ll be anxious to hear more about your appt with Dr. Omlie.
One day at a time! You’re on a great path!
That’s awesome news that your PCP will recommend surgery! It tells me they are taking note rather than blowing you off as if this is t a “thing”. I’ve back-read some of your posts and I indeed believe that Dr. Omlie can and will help you! Keep your faith tight…together we all somehow find a way!
So pleased that you’re through surgery & will keep praying for healing…take care of yourself. Nice to have a souvenir 
Hugs & prayers to you 
Hi ! Just wanted to check in on you ! Been thinking of you and hope that you are doing okay.
Gentle hugs!! Dina
Hi Dina- thank you so very much for checking in! Things are going just as I’ve read they would so I feel good having been prepared 
Symptoms are still there but they’re different. My tongue burns a bit but not my throat as it did pre-op. My ear still feels full but I’m uncertain it it’s swelling or just nerve recovery.
My operative notes suggest that compression of the jugular is what causes neck pain and ear fullness so I suppose it makes sense that these things need some recovery time yet after two years of compression.
I’ve been icing non-stop around the clock…it just feels good! Im sleeping on a wedge pillow and surprisingly, sleeping well. I’ve been able to ditch the oxy and controlling discomfort with 600mg of Ibuprofen every 6 hrs and Tylenol in between and 600mg Gabapentin am/pm which doesn’t seem to be doing much right now. I have a teeny touch of lip droop but only I can notice it (especially putting on chapstick…it’s almost comical, as if I just had Novocain at the dentist) and my ear/jaw is so weirdly numb. I can’t wait for things to thaw out and was just Googling to see if there’s anything I can do to help it along.
Eating isnt too bad. Soft foods mostly - stuffing with some soft pieces of chicken, protein drinks, eggs, had toast today and also my go-to of goldfish crackers . I think FBS is mildly showing up as of today but not unbearable. And the swelling is beginning to subside a tad…I can almost see my jawline and my earlobe doesn’t stick straight out today, lol!
I’m hopeful to say the least and I continue to read on this forum to remind myself of what’s normal at this stage. It’s easy to get freaked out and question everything, especially being an impatient, instant gratification kind of gal.
Otherwise, I get up and shower, toss on a little mascara just to feel human, have my coffee and breakfast and spend my afternoons binging on Netflix and napping. Which I’m pretty sure is exactly the routine I’m supposed to have right now
I’m so appreciative for you checking in! Thank you!
-Tracy
Hey there @Tmjhawk01! It sounds like you’re doing great! I’m so glad your off the oxy & are doing fine w/ OTC meds. Good job w/ the ice & wedge pillow & especially that you’re taking it easy & being calm & relaxed about taking things slowly.
You’re absolutely right! It will take time (probably several months) for you to see really good long-term improvement. ES surgery is good at forcing us to learn to be patient w/ our bodies which remind us quickly if we push too hard & too soon during recovery.
I hope the FBS stays mild & moves on quickly. I expect your lip will improve over the next few weeks, too, as the post op inflammation subsides.
You’ll be doing noticeably better over the next week or two & even more so beyond that. 
Isaiah, thank you. I can remind myself that this takes time and pray every moment of every day that the worst symptoms will still go away but it isn’t nearly as impactful as when you read those same reminders from someone else whose lived it and helped so many others through it. It’s the darn tongue burning! Worst symptom that I wish would magically disappear 
I’ve read many threads from folks who’s symptoms weren’t gone as quickly (instantly) as they’d like. You, Jules and others have been quick to respond that it’s still early and these things take time weeks and more so, months. Then all of a sudden I see it’s been a couple years since that member has been active. That indicates to me that likely and hopefully, things got better for them!
Thank you for reminding this impatient person to chill out and learn from the experience
Happiest Mamas Day to you!
Sounds like you’re doing really well so far! The ear fullness could be swelling or otherwise it could be nerves- mine felt like it’d had concrete poured in it after one of my surgeries but it went off after a couple of weeks. Lots of TLC & lots of patience & you’ll get there. Will keep praying 
Thank you for the personal experience and encouraging reminder 
These reminders really do help keep me grounded and calm!
Hi there!
So glad to hear things are going as best as can be expected! Just think the tough part is behind you and you are now moving to the good part, the healing and feeling better!!! I’m so proud of you and happy for you ! I have honestly been thinking of you and continuing to pray for you on a daily! With ES we are family and are truly the only ones that can truly understand and relate to one another. We are never alone in this journey and each persons success stories are not an individual success story but one for our ES family! That’s how I see it anyways! It’s what helps to keep me going and not want to give up. Continue to take good care of yourself and keep us posted when you feel up to it. Definitely cheering you and all our ES family on to a successful finish line.
Happy Mother’s Day! Gentle hugs !
Dina
Your incision looks great! How is it doing today? Dr. Omlie gave me one of my styloids, too. My husband wanted to see it. Ha! I felt vindicated when I saw it! It proves we weren’t making up our symptoms like some doctors told me.
I had the lip thing, too. It took a couple months for mine to go away. No one else noticed it but me. I am trying to remember what I did to help with the FBS. Perhaps some others have some suggestions? I think mine was dependent on some things I ate. I am trying to remember but, I think if I intentionally swallowed a couple times before I put the food in my mouth, that helped a bit. Mine didn’t last too log, maybe a month or so. Dr. Omlie will tell you that the jaw numbness could last a bit. It is from how they have to move the facial nerve around to get to the skull base. It’s annoying but you get used to it. Yes, it is weird. I think you are doing great! I hope today is a good day for you.
Hi Daryl - Sounds like you have been through a lot! Wow! Glad Dr. Cha was able to diagnose it for you. Seems like Dr. Cha & Dr. Omlie are becoming quite the experts & go-to people in Minnesota for this condition. Please keep us updated on your appt on the 19th.
Dina, you just breathe life into people with all your kindness & encouragement
I’ve read your words over a couple times and you know, you’ve perfectly presented exactly what this forum is…a family! I’ve been on other forums before and far too often it’s gloom & doom. This group however is encouraging, caring, honest, helpful and just perfectly giving. A heaven sent. I’ve expressed to family and friends that I don’t know where’d I’d have been without all this group provides. Often I’ve wished I could squeeze through the airwaves and hug so many.
So yes…you’ve nailed it perfectly! An ES family!
Sheri, I think all is “so far, so good”. I even forgot to take my ibuprofen on schedule! My ear fullness feels less intense, the swelling is beginning to lessen, I’m sure thanks to constant icing which also really helps the pain.
The tongue burning is about 25-30% less today which has been nothing short of amazing! Given the Gabapentin has done nothing to this point, I hope it’s healing rather than the meds suddenly deciding to help. I expect tomorrow could be different but the mere fact it’s lessened gives me hope! Taking my multivitamins loaded with B-complex just in case there’s truth to them helping with nerve repair. Great news that our weather will be warm this week and I just may feel more up to spending some time outside, cautiously.
I laughed at my son over my styloid-in-a-jar when he said it looked like a chicken wing after someone ate the meat off (ewwww!!!), lol! I half teased that maybe I should plant it in the flower garden and see what grows…he wasn’t as amused as I was
It’s definitely FBS that I’m dealing with but how odd that I dealt with this all my life and never gave two thoughts about it. When I first read about it here, I knew exactly the feeling! It’s just a bit more intense now but nothing (yet) that I haven’t been able to push through.
Thank you for checking on me, the advice and being a local I can compare notes with!
So glad to read about your improvements today! As far as FBS goes, I learned that if I stayed very hydrated it really helped lessen the intensity of my FBS. I think having concentrated saliva can stimulate worse nerve pain but keeping it “watered down” is helpful in easing the intensity. I also found that putting food in my mouth & letting it sit on my tongue for a few seconds before beginning to chew sometimes helped, too. As @naturelover suggested, swallowing a couple of times before starting to eat might help.
Lucky you to have been able to take your styloid home! I asked for mine but was told it was a “hazardous material” & had to be sent to a medical lab for examination. SHEESH! It was only hazardous to me not to anyone else!! 
I am so full of gratitude for all the comments, well-wishes, advice and check-ins.
Lots of questions at this stage start to come to mind during all my “laying around” and I seek for those answers here through past posts but may only get vague answers to my questions. Maybe y’all can offer up what you’ve read or learned, if anything?
TENS units—has anyone explored using one of these during recovery to help things along? I’ve used mine in the past not only for pain relief but I’m wondering in this case to increase blood flow and perhaps aiding in nerve regeneration?
Massage — is there any reason one couldn’t begin very light massaging on their face/masseter area now (obvs staying quite clear of incision) or even perhaps light mouth or neck stretches to help loosen tension/tightness?
Any recommendations on massage once the incision is healed…presumably this is around the two week mark, to begin working the scar tissue so it loosens?
Million dollar question —my biggest and most painful symptom has been the tongue burning. Just when I get whipped up that I think it’s showing improvement, I go & tell someone & an hour later I’m jinxed & on fire again. I’ve reached past posts that describe this as one of the symptoms of classic ES so I have hope that my surgery will help this. But finding posts of folks who’ve had it and been relieved of it is tough. I may have found one or two and many posts that leave the results up for speculation. Any offerings on this symptom or any experiences read that I may have missed? Also curiously, can any confident offering be made on which nerve causes this? I’m reading it’s the lingual nerve that branches from the GPN but also see stated here the hypoglossal nerve?
Thanks to all again for just BEING HERE!
I hope you have a speedy recovery!
Did you have stitches or did you have yours glued because when I had my spinal surgery I had three fusions done on my cervical spine and they did one giant glue job
Bicarbonate of soda dissolved in some water can help with mouth burning, can’t remember the exact amounts, but you can search for that online. I hope that it eases soon
I’m on 300 mg of gabapentin right now - it helps mostly with the nystagmus. My PCP read a limited study that suggested spreading it out - I take 100 mg 3 times a day - is much better than taking it once a day.
I can attest to that.
I’m so happy for you! It’s wonderful to read that the surgery can help.
