Thank you for your update, @Andy89316. Your left incision is invisible & the right one will get there before too long! I still have a bit of numbness along my left jawline after 10 yrs, but like you, I only notice it if I touch it. For me, it’s a reminder of how far I’ve come since my miserable ES days.
It’s such great news that your voice is strong again & that your head rotation is no longer hampered by pain. Also that you’re able to work again & essentially live a normal life is so great! I’m sorry for the emotional toll this has taken on you but am glad you have a good therapist who’s helping you work through that. Just imagine how amazing things will be in another few months after more healing takes place!
Interesting about your neck/incision’s reaction to pulling the skin down on the left side. I have a weird thing that happens intermittently where the skin on the left side of my neck contracts. It’s almost like a skin Charlie horse. It gets all wrinkly for a few seconds & is slightly uncomfy but not painful. That started several years ago & may not be related to my ES surgery, but I keep wondering if it’s some sort of residual nervy reaction from the neck invasion of days gone by.
I also want to thank you for continuing to encourage & provide helpful info for our members as you heal. We really appreciate that!
@Andy89316 Thanks for the amazing updates. I have that same little spasm you describe @Isaiah_40_31 It’s getting better with time and with the help of a massage therapist who specializes in something called “scar remediation” (not the surface scar but the scar tissue underneath the skin). Although I had the left side done first in July 2024, I still have more numbness along the jawline and just below than the right side which was done in October 2024. Dr. Nakaji thinks it’s because he had to use more retraction on the left to be able to shave C1. But it’s still improving all the time.
The incisions look good, and great that you’ve seen so many improvements! So many things we take for granted usually you notice before and after surgery… I have a bit of numbness still & weird sensations occasionally up my ear, but like you say, it’s better than pain any day!
Just out of interest, what PT do they do for the costochondritis? My friend’s daughter has had bouts…
As @Isaiah_40_31 says, thanks for the support you’ve given to others, & to @Chrickychricky as well!
@Chrickychricky - Thank you for your update as well. I’m glad you’ve found a massage therapist who’s been able to help w/ your sub dermal scar tissue. I’d never heard of scar remediation. If I can remember the term (), it will be good to pass along to others as a resource to look for post op if scar tissue seems to be causing problems. I’m glad Dr. Nakaji had a logical explanation for why your left side is worse than the right. Hopefully as the months pass, you’ll get some more significant feeling back in the places that are still numb.
I also second what @Jules said - I appreciate that you continue to come back & encourage our current members who are struggling. Thank you for that.
That extraction explanation makes sense. Thank you for the suggestion. I’m also looking into Craniosacral Therapy and Myofascial Massage, which many folks say can help with the trauma of healing from long term illness
Here is link to a great Reddit post for Costo Reddit - The heart of the internet . Here is a screenshot of my program. I see the Dr weekly for 6 weeks, she spends about 30 minutes doing a front and back massage; we then do exercises. I’ve noticed some good improvement, but I know I will need to continue it for weeks and weeks to get to fully fixed and not have to worry about flare-ups.
@Isaiah_40_31@Jules Happy to do the updates. Have it on my calendar to do more every 3 months til the 1 year mark. Being able to read long-term stories here really gave me the confidence to move ahead when I first started researching.
Thank you for sharing your PT exercises, @Andy89316. It sounds like you’re seeing a good therapist. I like the variety of exercises you’ve been given. I have to say my favorite part of every PT session I’ve ever been to is the manual body work. I could get used to that on a regular basis!! Sticking with the exercises over the long term is the hardest part for me.
Thanks for the info @Andy89316 , I’ll pass it on! I’m glad that you found the site helpful for researching whether to have surgery, sometimes members get worried that there are lots of unsuccessful surgery reports on here as sometimes the people who’ve had successful surgery leave to get back on with their lives (understandably!), so we see more members who still have issues, again understandably, & it can skew the ‘success rates’ , it’s so good when people come back and share their stories, whatever the outcomes!
6 month update!! Overall, doing really well in terms of ES!! Couple of smaller health issues to deal with though…Mandibular Torus removal surgery in the next couple of months and then Invisalign to upgright my molars and give me like 2/3 mms of expansion. I did a Lofta at-home sleep test and I have mild OSA, like very mild. Surgical expansion is considered, but probably/hopefully not need after Torus removal and Ortho treatment.
Scar pics. Left is basically gone and Right is a little more present (10 weeks between surgeries), but not much.
Little bit of an insurance headache. Aetna has a policy bulletin for ES, # 0400. Basically, they want conservative treatment tried first, some pretty exact conservative treatment. Coughlin and Methodist both in-network and they were able to give provide an exact amount for my portion weeks before surgery. No pre-authorization was done. Aetna initially needed more info, that was provided. The claims were then denied for ‘Clinical’ reasons, the policy bulletin I believe. This was never talked about by Aetna nor Methodist. Personally, I think the proposed conservative treatments are pretty dumb. I sort of stressed about it for a while, but its been made clear its the Hospitals fault and they would eat the charge if it never gets approved, appx $30k overall.
As I said, doing really well. I have been doing Physical Therapy for my neck, just lots of tension and poor posture; great improvement there. If I hit the right spot on my left side I can get numbness, but I have to seek it out. My overall neck stability is increasing greatly! Feeling much steadier all the time. I do get a mild pain near where the styloid would attach if I turn my head as far as I can to the right. My speech is much stronger than it use to be and I’m not experiencing the loss/hoarseness I use to. Basically, all the ES symptoms are gone. Now its just about creating new muscle memory and the thought patterns I had for so long. I recently started working out and its so much easier than it use to be, my head doesn’t feel like its going to explode!! I’m very excited for the Torus removal because it impacts my tongue movement and chewing. Overall so excited for progress over the next 3-9 months. Have so much more energy and optimism!!! Finally working on the long term goals and building the life I want.
Thank you for your awesome update, @Andy89316! We LIVE success stories here & yours is a great one. Your incisions look amazing, too! Recovery happens bit by bit as you have experienced. I’m so happy for you!
I have tori in my mouth that are annoying but not impacting anything much so I can understand what a relief it will be for you to get those taken care of. I hope that surgery & the Invisalign stop the sleep apnea problem so you can be free of that as well.
I really appreciate hearing from you & knowing you’re doing so well!
Thank you for the update; it’s great to hear that you’ve been helped so much with your surgery! I keep forgetting that Dr Coughlin did your surgeries & where he is
I hope that the other problems you have will improve with the right treatment & that you don’t need more surgeries…Take care!
@Isaiah_40_31 Thought I would include the procedure details. Also, insurance did approve 1 appeal so far, which I take as a good sign, 3 more in progress. The Hospital bill was $10k, discounts of $3200, Aetna paying $5600, and I might be paying $1400. Not sure about that last part cuz I did pre-pay my portion before the surgeries and it was only a few hundred bucks. Nice to get progress in that area.
Sounds like a very straightforward surgery, @Andy89316. I’m glad your insurance appeals are moving forward. So crazy they make patients go through that process when they’ll likely approve the procedures in the end. Your 25% of the way to getting your surgery taken care of at a lower cost to you. I hope the other 3 appeals are also approved ASAP.
Yeah. Mandibular Torus removal, scheduled for 8/14. Should make chewing much more comfortable. Will give my tongue better mobility too so I think my breathing will improve too!! The recovery though is kinda gnarly I guess, probably liquid diet for a few days
I’ll put your mandibular torus surgery date on my calendar & pray it goes well & healing is quicker than expected. I bet immediately post op for a week or so will be gnarly. I have mandibular tori which get irritated when I eat certain things so I know how irritating that is. Thankfully, mine aren’t so pronounced I need to do anything about them. I’m sorry you have to, but I know you’ll be glad they’re gone/reduced.
@Isaiah_40_31 Surgery went well. Quite swollen and numb the first day. Kind of awkward of course, stitches in my mouth and all. But can already tell I have more space!! Gotta take meds of course, but I think I made a really good choice. Mostly excited, but of course a little nervous about the changes. Hoping this means I wont need to do Ortho treatment to give me a couple of mms of expansion. In lab sleep study scheduled for mid-september
I prayed for you this morning, @Andy89316, as God brought you to mind, & I have been negligent in not checking in with you to see how your surgery went. I hope it does prevent the need for orthodontia & perhaps even helps reduce possible sleep apnea. I’m glad you’re doing ok post op & hope healing goes quickly for you.
), it will be good to pass along to others as a resource to look for post op if scar tissue seems to be causing problems. I’m glad Dr. Nakaji had a logical explanation for why your left side is worse than the right. Hopefully as the months pass, you’ll get some more significant feeling back in the places that are still numb.
