@Isaiah_40_31 Thank you, I feel like the swelling is finally starting to ease down but I may be wrong. When they discharge you from the hospital they tell you to listen to your body and not overdo things. I strongly feel like sometimes it’s better NOT to listen to your body especially in the first 2 weeks post op. Today is day 6 for me and I woke up feeling like I’m finally doing better, I didn’t take any pain killers during the night and got up to make myself some tea. The camper is obviously a mess with only a man in charge and me being a bit of a clean freak and wanting to help I decided to pick up some things. Big mistake. A simple act of emptying the trash can put me in horrible pain in my neck and face especially the right side where they did more cutting and digging so now I’m back in bed paying for it. Lesson learned, it’s ok to leave mess around and it’s ok to lie in bed and do nothing all day every day, it’s called intentional healing. Whoever is reading this preparing for post op recovery - please give yourself a lot of grace, let go of things you can’t control and focus on yourself, it’s ok to be selfish in cases like this 
@Jules Thank you, the weather is not the best with winds so strong yesterday it felt like our camper would fly away like Dorothy’s house in the Wizard of Oz. Today is much better and definitely way better than back home in Nebraska with their - 45 windchills and snowstorm of the century. So I’m grateful for little things
Very well articulated, @Elena! I had the same type of scenario except, as I noted, but a few days sooner. I recall I was dying for some physical movement so I went for a longer walk than I should have & was up & around in my house a bit more. I also hated the way Percocet made my brain “foggy” but it was worth it in the end to stick with it. I took it over a 6 week period but began cutting it back in my second post op week. By the end I was taking 1/2 or 1/4 tablet at night to help keep pain at bay so I could sleep. Probably could have been taking Tylenol by then but was afraid to try it since the Percocet worked so well.
I hope the wind dies down soon! I know the midwest is having an exceedingly cold front moving through right now. This moring our daughter sent the temp predictions for her location in WY & it’s going to be -40º F tonight. I feel sorry for the livestock & wildlife in her area!!
@Isaiah_40_31 Yes, I have the same reaction to Oxycodone of “foggy” brain with a bonus of nausea which I’ve been taking Ondancetron for to counteract, I have a leftover prescription from the past. Today has definitely been a very bad day and I’m now not sure if it was caused by my morning activity or if it’s a flare of post surgical pain. The very intense pain is right under the right jaw angle slightly above the incision and radiates into the teeth and ear, I can only assume it might be from cutting the stylomandibular ligament as I didn’t have this pain prior to surgery or might be from cutting deeper than the left side. Either way it’s pretty bad and doesn’t seem to respond to pain medication. Hoping for better tomorrow 
Ice the painful area if you can & keep with head elevation when you’re lying down. Nerve pain is sneaky like that especially during recovery where it deceptively disappears for a few days then comes zooming back for awhile before disappearing again. New pain sensations can also arise, as you noted, due to the invasiveness of the surgery. The swelling you have from bilateral surgery is adding pressure to an already irritated area so that’s contributing, too. As painful as this is right now, it will get better, I promise!
Hope the new pain does go soon…hard when you want to do some tidying, it was sweeping the kitchen floor which set me back, I thought I was up to doing it but found out I wasn’t! 
Day 10 post op (yesterday). Recovery has been a very VERY humbling experience so far, very slow, painful and challenging. But it does get better. My head, face and neck still feel very tender to the touch. It feels like Mike Tyson came by during my surgery and gave me a good beating. It hurts to frown or smile, so facial expressions are not my forte right now. But again it is very slowly getting better. Mouth opening and ability to chew are also improving. Headaches seem to have come back after I finished a course of prednisone but headache meds and rotating ibuprofen and Tylenol help tone them down. I’ve drastically cut down pain medication and the last two days only took it once before bed. Neck swelling/strangulation sensation is still there and still fluctuates but doesn’t feel as horrible as previous 9 days.
If the first week I was basically in bed 24/7 today I was able to pick up some mess, wash the dishes and cook a simple meal - I consider it a huge achievement compared to previous days. As with everything it’s important not to overdo it and listen to your body.
Surgical glue is looking gross due to constant icing, showers, sweat etc and I’m really tempted to just peel it off but I know it’s not a good idea.
Overall I’m getting used to the idea that it’ll be a long haul and don’t expect to see any immediate results. Patience is not my virtue but the only option available.
I remind myself to stay positive and not give up especially on very bad days. Keeping the faith and positive attitude is a key to intentional healing. Hope this post helps someone else going through a hard time. Peace and love to everyone
Your incisions look quite amazing, @Elena, but they’re only the outside story. The healing going on inside your neck is what’s newsworthy!
I’m really glad you’ve been able to begin getting some level of activity back. You’re so right about needing to listen to your body. After a day like today, you may have a more “tired” or “sore” day tomorrow. DO NOT DESPAIR! Your body will rally & your energy will return gradually with greater vigor. As that swelling gradually decreases, the facial, jaw, & strangulation symptoms will subside. It’s great that you’ve been able to cut the narcotic pain meds back so much this early in recovery!! You’re one tough cookie especially as you’re also riding herd over your 3 yr old. 
Recovery is definitely a test of patience! It does look like the incisions are healing well, and glad that you’ve been able to do a bit ore now…sending you a hug & prayers for good results 
After my one sided surgery I was in awe of those that can do bilateral. Sounds incredibly rough but each day as your body is working hard to heal it will get incrementally better…
As I’ve mentioned the increments for me were so tiny they were hardly noticeable, and I found it was better to look at them more as a weekly increment. I figured that out pretty far down the line so I do think it’s frustrating when you’re looking for improvement and it’s hard to see. And it’s certainly hard to see when your body is healing.
This is a difficult surgery and can’t imagine it with a three-year-old. Thanking of you and your family and hoping you are continuing to give yourself the grace to lay low when you need to.
@Isaiah_40_31 Thank you so much for the kind words and encouragement. Of course you ended up being right about the following day which was yesterday. All that activity coupled with a sleepless night due to an unrelated stressful event made me feel like I took 10 steps back in my recovery, made me feel like the surgery was a mistake as I still have every single one of my symptoms and made me regret cutting pain medication that early. I experienced increase in pain, especially nerve pain that seemed like it was so much better after the surgery, increase in headaches and swelling. The strangulation feeling was back full force and overall my mood and mindset were back to zero. But it does help me greatly to read and reread stories of recoveries both on this forum and in facebook groups where people didn’t wake up from surgery miraculously cured but where it took months and months to see any improvement and resolution of symptoms. I’ll attach a screenshot of your comment to another member that I reread every day especially when I’m feeling down and hopeless. Thank you for everything you do to help people struggling with this disorder, you’re truly a one of a kind person with a big heart
@Jules thank you so much for the kind words. A test of patience is an understatement, it’s a test like no other I have ever taken in my life. And the fact that you can’t refuse to take this test makes it so much harder. I hope it does pay off in the long run, but if it doesn’t I’ll continue my journey of figuring out what is causing my body to hate me so much. I know I need to work on my positive mindset 
After a huge setback yesterday it’ll be a challenge but it’s possible
@Leah thank you for your support and understanding. It’s definitely hard to see improvements with progress not being linear and especially when it feels like you’re taking one step forward and then 2 steps back. Or what it feels like 10 steps back. It’s a good idea to look at it in weekly increments. I definitely see improvements in the ability to open my mouth more and the things I can eat, ability to perform certain physical activities. As I said before patience is a virtue I don’t have I used to be a very active person and laying in bed doing nothing is driving me nuts. But at the same time it’s the only way to let your body heal properly with adequate rest. This surgery is definitely a huge test of patience and a very humbling experience, especially when you don’t see the desired relief from such a major intervention.
Im starting too look into possible physical therapy or massage therapy to help with stiff/tight neck muscles post op as they’ll definitely need some rehab work when it’s ok to do in due time.
Thank you again for all the support
I wanted to post one more testimony of a patient who I believe had a surgery with the same surgeon as @Isaiah_40_31 . I hope this is ok, I removed all the personal information from the screenshot. If not ok I will delete. I reread this story every day to help remind myself that recovery is not a straight line and can take long long time, longer than anyone would want to but that it’s still possible to feel better 
Very good info! One of the things that has been hard for me is explaining over and over that this takes time (to everyone around me). Very few know the details of what I went through just to get to surgery and it was too exhausting to explain to others before. My method of operating is truth, but the truth is too much and too long … i’m having to learn to just give the very high level synopsis and try to leave it at that.
You’ll have time down the line to unkink and then rehab your muscles. ))
Elena,
I’m really glad something I wrote awhile ago is helpful for you now. I commend you for looking into past posts for information & comfort. There is so much here on this forum. I did the same thing when it was my turn.
I love the other testimonial about recovery that you posted. Pain & symptoms remaining post op are discouraging/depressing but knowing your body is working hard to heal & thrive, & that all or most of the pain will resolve gradually is the silver lining in all of this.
I like the image of swelling being like a pillow that surrounds the injured tissues in the neck, protecting them & helping to immobilize them so they can recover. As recovery progresses, the body gradually withdraws that pillow of protection so the soft tissues can begin functioning at more normal levels.
I’ve recently been laughing at myself a bit as I think of the advice I’ve given here regarding post op recovery because I had a very minor surgery a few months ago to remove a lump from the palm of my hand (doc said it looked like scar tissue but pre-op he was sure it was a ganglion cyst). At any rate, the surgery took 7 min & didn’t seem like a super big deal, but my hand is still sore at times, & I get frustrated thinking it should be well by now. Then I remind myself about my ES surgeries & what the recovery looked like for them. That reminder helps me to be more patient.
If you think about other surgeries, like say a hysterectomy, you’d be advised to take it easy, no lifting etc for 6 weeks, I know it’s different muscles & healing involved but we should still be giving ourselves the same length of time to heal & take it easy! And nerves take even longer to settle down than muscles…
Finally got the picture of my styloids. I swear I have seen this exact picture before but it might me my imagination, I don’t trust my memory anymore
Those are pretty curved & nasty looking buggers, especially the right one, & both are thick at the skull based end. Bet your neck & nerves will be much happier now that they’re outta there!! I hope your healing starts progressing more obviously as these next weeks pass. I’m so glad the worst is behind you.
Thank you @Isaiah_40_31, I sure hope so. It’ll be two weeks tomorrow and although I see the progress in healing so far I haven’t seen any improvement in pre operative symptoms. But I’m keeping faith and taking one day at a time.
I appreciate having this wonderful forum with such amazing supportive people like yourself and others. You have helped so many patients get through the worst days of their lives. Truly grateful