For those that have been following along, my right sided styloidectomy with Dr. Hackman at UNC Chapel Hill is this Monday, January 8th. I cannot believe it’s almost here. Because my surgery is a Monday, I got the pleasure of a Friday call for arrival time instead of the night before (which is most common). I didn’t expect the call to come until this evening, but I received it just a little bit ago (around 10am!) and I am slated to arrive at exactly 11am EST Monday morning at the main hospital.
This is starting to feel very real. I have had nothing but truly incredible, compassionate and empathetic interactions with everyone involved so far - to include Dr. Hackman (he has the best bedside manner of any surgeon I’ve ever known, personally, professionally or as the patient). A member of the team (a NP) called me yesterday to discuss pain management upon discharge (we have already had lengthy discussions about post-op pain management for 24 hours in the hospital). It went very well. She worked with my palliative care provider on it, which is ideal.
Now, I have to go into my pre-road trip mode! I have a lot to do today before leaving for Durham tomorrow. I have to prep the house and stuff with my pets (four cats, one dog) for the pet sitter spending the week here. I am also going to a local reptile rescue today to meet the crested gecko I am adopting in February - something that’s been in the works for months and will be really fun. I am going to go wash and detail my car, a tradition before road trips. I will pick up my IV steroids at Walgreens to finish off my errands. I need to pack two bags - one for the night in the hospital and one for the week in the hotel. Then, tonight, I have a bunch of self care measures I am going to practice to get myself in the zone, mentally. Yesterday I got my hair done, and last weekend I got a surgery-appropriate manicure (I have very long natural nails that are usually thick-coated in black gel polish which isn’t ideal for surgery/monitoring so I got a neutral pale pink that light shines through very well).
Tomorrow morning I will take my time getting out the door and make the 3 hour drive from the Crystal Coast NC to Durham. My mom flies in from OH to RDU and lands at almost precisely noon. Two of my siblings live together in RDU and are picking her up at the airport so I am not in a rush. I will pick her up at their place and take her to the very nice hotel we are staying in all week. My husband travels full time for work, and very unfortunately cannot be here for surgery (this was a tough call we had to make as a team), but he used his Hilton Honors points to totally cover the cost of an entire week in a very nice Hilton Family hotel (not the Hilton - but the Hilton Homewood Suites!) which I am grateful for. Mom and I will spend a relaxing weekend in the hotel together. My siblings will come hang out Sunday. I also have several friends in the area from a Gastroparesis server I am in that have had surgeries at this hospital and will be on standby all week in case my mom needs help with anything while my siblings are working. All plans are go.
Then, it’ll be Monday before I know it - I will go into surgery - and I WILL COME BACK OUT better than I am now. Have to believe it. Have to repeat it. Have to see it through.
Thank you so much to everyone that has supported me throughout this journey, thus far. I am looking forward to hopefully joining the ranks of members here that can come back and report relief, improvement and slow recovery - and eventually be telling new members about what I went through and how I got better as they post here years from now, desperate for the same. Have a wonderful weekend! I will report back as soon as I can post-op.
Wow, you’ve had alot to organise! I’m so glad that your surgery is nearly here, that you have good family support & that you’re able to turn it into a positive with some family time…will be thinking of you & praying for you on Monday, safe journey today
Would be nice if you & Elena could meet up too!
WOW! You are organized! I hope your drive today goes well & everything went as planned getting to the leaving point. It’s also great to know that Dr. Hackman’s team has been in touch & proper post op pain management has been assured as that’s very critical to the success of your surgery.
It’s very generous of your husband to share his Hilton points so you & your mom can stay in a very luxurious & comfortable place during your early recovery. What a gift!!
I’m glad you have pets that keep you company since your husband travels so much. I reptile sat a couple of leopard geckos some years ago. They were a lot of fun! I grew up w/ quite the animal menagerie in our home because my mom was an animal lover - anything w/ fur, feathers, scales, even 8 legs, entered our domaine for observation & care at some point or another.
I know you’ll enjoy these next couple of days w/ your family. I, too, have great expectations for the outcome of this surgery & will be praying for you & @Elena on Monday.
@Elena - I’m really glad all the details have worked out for you as well and am glad you only have an hour drive today vs the longer one a few weeks ago. Getting an early surgery is good because that means you don’t have to starve all day while you wait.
I also have great expectations for an excellent recovery for you & will be praying for you & @slekeille on Monday.
@Isaiah_40_31 Thank you, it’s only an hour drive because my husband still has a job project here in NC (well actually the job itself is in Virginia) so we’ve been staying at a tiny campground in a remote area called Semora since October of last year. The drive back from Nebraska to NC was better than the one from NC to Nebraska but the route through mountains in WV still made me feel awful due to elevation changes But we made it so that’s all that matters
I hope you’re right and I’ll be able to eat, I’ve only had one surgery 12 years ago and had horrific nausea from anesthesia for several days. Hopefully this time I get some good anti nausea meds (I’m planning on discussing this with anesthesiologist) through IV.
Thank you very much for the prayers and continued positive vibes. I will make a post with updates as soon as I’m physically able to. If I don’t please send me a gentle kick in the butt reminder
Definitely be very emphatic w/ the anesthesiologist about being prone to severe nausea from anesthesia. I know there are things that can be added to the IV to prevent that even if you need it ongoing for the first 24 hrs. Hoping this time will be different for you in that department!
I’m glad the trip back from NE was easier for you, but being back safely is what’s most important.
So you’ve been “camping” for awhile! I would love to be able to do that myself i.e. long term camping, but I bet it would be nice for you to be back in your home to stay for a bit, as well.
Also you may want to ask for a smaller, “children’s” tube for intubation, if that’s an option (depending on your physiology/anatomy). It irritates the throat less than the “standard adult” size one. I had it and it was quite a difference compared to my previous surgery - I had sore throat maybe for two days instead of a week.
@vdm Thank you so much, this is a great suggestion. I was actually going to discuss this with anesthesiologist about using smaller tubes but had no idea they might use children’s size. My concern is not only throat irritation but not having my mouth opened too wide during insertion as my jaw joints aren’t in perfect shape and I have somewhat of a restricted opening (not severely restricted but still). Some member in the Facebook group mentioned that Dr. Hackman supposedly subluxates the jaw to get to the styloid and I’m planning on asking him about it as this is worrisome to me.
@Elena - I can imagine the small space would be tough w/ an active toddler. Forgot to weigh that into the camping equation. At least you’re not in a tent! That would be much more challenging!!
Subluxing the jaw is pretty standard practice during transcervical styloidectomy. It’s necessary to get it out of the way so the styloid can be more easily accessed. However, it’s part of the surgery that isn’t usually discussed. I’m glad this came up for you prior to your surgery so you can address it pre-op. I have horrible TMJ issues & had chronic joint pain prior to my ES surgery, didn’t know about the jaw subluxing until several years later, but must say that I no longer have jaw joint pain. One thing to consider is that when you’re knocked out by general anesthesia, your body becomes like a wet noodle so all joints & ligaments are more mobile thus the subluxing of the jaw potentially won’t be as traumatic as it would be if done while you are awake. We do have a few members who ended up w/ worse TMJ pain after ES surgery so that is also a risk.
Hoping all goes well with your surgery Monday and your overnight in the hospital ))). How wonderful to have your Mom available and family nearby. Looking forward to a good report when you are up to it. All the best!
@Isaiah_40_31 thank you for explaining the details of the jaw manipulation during surgery. I don’t really have any joint pain but lots of muscular and nerve pain in my face. I think I’ve just been slightly unnerved by some patient testimonies. One of his patients that just had a surgery with him a month ago told me her bite if off after the surgery, and another patient reported that post op upon waking up she could literally feel like her jaw was dislocated which sounds pretty scary Nevertheless I trust Dr. Hackman’s expertise and the steps he needs to take in order to perform a successful styloidectomy.
Hey Elena ))
Excited for you and @slekeille to get this behind you.
I specifically asked Dr. Hackman if he was going to dislocate my jaw at our initial meeting and he said no. And I didn’t think to ask again. My jaw has been painful but very manageable. I was able to eat all week (and I can’t remember if you are unilateral or bilateral)… of course bilateral will make a difference. I brought everything for smoothies, but had also made and froze soup and was able to eat it just fine. My jaw would only open a tiny bit and that got better every day.
And speaking of things getting better, I found the forward momentum moves in tiny increments. Like @Isaiah_40_31 has said, one day I’d noticed something else has dropped off (or lessened) from the list of pains. The facial pain and brain fog was the first to go for me. I have also found that ‘everyone’ around me had more optimistic expectations for my recovery status than was realistic. And while I tried to set the expectations appropriately, this condition is hard for at least my circle to fully understand. So I had to decline many offers to go and do.
A reminder to get something for number 2! )). Miralax was what I settled on.
Will be thinking of you both on Monday and this week. Congratulations for making it this far!
All the best ))
Hi @Leah ! Thank you so much for the words of encouragement and support, I highly appreciate it. I did ask Dr. Hackman at a telephone appointment about the jaw dislocation but I was referring to intubation not to his surgical approach so I’m going to ask him again on Monday, well that is if I get to see him prior to surgery as I’m planning on asking the anesthesiologist to knock me out prior to moving me to the OR, so I don’t have to observe all the surgical tools and the setting of the surgical environment
My surgery is bilateral and I’m not getting my hopes high on having immediate relief or an easy no side effect surgery like several patients of his I’ve recently talked to have had. We’re planning on grabbing a blender at the store in Chapel Hill in case I’m not able to eat solids so my hubby could blend things for me. Otherwise we already have ensure and bone broth ready for some nutrition. A local patient of Dr. Hackman gave me some great recommendations for local restaurants to get healthy takeouts. Thank you for the reminder to get a laxative, that’s one thing I forgot about and will have to grab tomorrow.
As far as people’s expectations for my recovery I’m not worried about that. We are 20 hours away from home (my husband currently works in NC) so don’t have any friends or family around and no commitments or plan to keep. Recovering in the camper might be a little challenging but doable. Im trying to look at positives and being grateful for the opportunity to have a surgery with one of the top specialists.
Thank you again for your kind support
It took mine about three months to get to the “baseline”, but the discomfort was minimal. Mostly I needed to remind myself not to overstretch it. And not only because of having it excessively opened for a prolonged time during the surgery, but also because two ligaments limiting how much the jaw can open have been cut too (stylomandibular ligaments).
Oh yes, about the anesthesia airway tube, I did also speak with the nurse beforehand (on the phone), and then with the anesthesiologist as well, and told them to be as gentle as possible with my neck and use the smallest thing they could.
I was out before they rolled me out of the prep room so you should be good there, but of course good to ask.
And also because you just never know, I always ask for anti-nausea meds. I also asked for some to take with me (script) which I never did get (liquid). Since I had neck surgery before, I thought there’s nothing worse than being ill after you’ve neck surgery … Luckily, that wasn’t a problem, but I wanted to have something in the back pocket.
Great on having things prepared and your expectations set. And while I didn’t have bilateral, I was really surprised at how well I did do that first week. My drive home was hard because I was very uncomfortable and that set me back a couple of days.
During my downtime and waiting for this surgery, I binged on people walking the Appalachian Trail. Lots of fun and one of the things I really liked was the trail angels that would bring treats to the hikers. Would be wonderful if we had some helpers in Chapel Hill for those that travel for surgery. I would love to do that.
@vdm Thank you for sharing, I’ll make sure to be careful with jaw opening although I’ve already been doing this even prior to surgery, sort of protecting mechanisms of “guarding” due to high levels of pain in my face and teeth. I do remember asking him about stylomandibular ligament whether he removes it if it’s calcified and he told me it’s actually necessary to cut it to get access to the styloid.
@Leah Thank you, anti nausea meds were number one on my list of questions to the anesthesiologist since I had severe nausea from anesthesia with my previous and only surgery 12 years ago. I was so sick for several days I literally tried to push my chin into anything I could to induce vomiting and relieve this awful feeling, even though I wasn’t supposed to do it due to a huge fresh incision across my stomach. So I made sure to even discuss this with Dr. Hackman but I’ll be definitely bringing this up in the preop room. I know they can give you some patch too they put behind the ear or another location on the body. I also have my old prescriptions for Phenergan and Ondansetron as a back up. I even spoke to my primary back in Nebraska and she’ll send prescriptions for whatever I need if I have problems getting ahold of Dr. Hackman’s office as one patient I’ve spoken to ran into this issue post op.
I love your idea avoid the helpers for people who travel to Chapel Hill out of state. It’s hard enough to travel but not having a “village” to help with recovery and/or childcare, food prep etc is especially challenging. I’d love to volunteer for that as well especially while I’m in the area.
Great that you’re on it for the nausea meds.… I did just think about my lidocaine patches which were helpful for my jaw. I did not understand the incision by the ear, and what that looked like until a while after, and I looked it up to see what that was. the way,
Dr. Hackman goes in To the skull base different than most of the other doctors… And I think that was causing a lot of my jaw pain (but I never asked about the potential dislocation during intubation).
I would cut the lidocaine patch about an inch and a half or so and put it on my jaw/cheek area away from the incision, but close to it. That was extremely helpful.