Hi all,
Looking for some advice. I saw an orthodontist today who suggested I also see an Oral Maxillofacial Surgeon before undergoing a styloidectomy. I meet with Dr. Jonathan Trites (ENT) next week and am desperate for a solution. Has anyone had OMFS take the lead of styloidectomy? The orthodontist wants to make sure issues with my bite and breathing are addressed concurrently.
Would appreciate anyone’s perspective.
We’ve had a couple of members who’ve had surgery w/ Dr. Trites - @TML, & I can’t find the other person right now. I think TML has had 2 surgeries done by Dr. Trites for bilateral ES & Hyoid Bone Syndrome, & though we haven’t heard from him directly, I believe he had a good outcome from his first surgery. I don’t know about the second one.
Since you also have bite & breathing challenges, you can address those w/ Dr. Trites when you meet with him, & ask him if he would confer with your orthodontist & maxfac doctor before seeing you for surgery. Based on his answers, you should be able to determine if he’s the right surgeon for you or not.
I’m sorry your situation is a bit complicated. Dr. Trites is a very experienced surgeon & should be able to accommodate any special needs you have.
Thank you so much. My preference is Dr. Trites as the thought of undergoing jaw surgery isn’t appealing. Would love to touch base directly with @TML if they are up to it to get their perspective. Hope their second surgery went well. I will keep this thread updated once I have an update.
You can try sending @TML a private message by clicking on his screen name in this sentence. He hasn’t been back on the forum since he had his first surgery so I’m not sure if he’ll reply. I hope so, though.
Great advice. I will reach out.
Some members have found that their bite is different after surgery, something to bear in mind! I hope that your appointment with Dr Trites goes well!
Thank you 
I don’t have any advice to offer but was curious about your bite and breathing issues - could you explain what yours are like?
one of my most distressing symptoms is difficulty breathing; it has a lot of triggers but one of them is how my mouth is positioned (can’t wear my mouth guard anymore because of this). It seems like breathing difficulties are less common with ES & HBS so I’m always interested when someone else has that problem.
Thanks for reaching out. My breathing issue is mild positional obstructive sleep apnea. I need an in hospital sleep study to rule out upper airway resistance syndrome because some sleep studies I have done don’t diagnose osa but recommend further testing. I am unfortunately in too much pain to go through with that right now. My breathing issue is related to sleep. I am guessing here, but I assume posture, jaw, tongue position and bite, airway, sinuses, and muscle guarding patterns would impact the muscles being used to breathe and create compensations. I have a connective tissue disorder and have snored since infancy… so there is likely something related my anatomy impacting my breathing during sleep. I also have a bifid uvula so my mouth didn’t form properly. The orthodontist I saw this week noted to relieve my TMJD pain and bruxism fixing my bite with orthodontics and/or surgery might also help address any airway issues. During the day, I find I can’t take deep diaphramatic breathes (tight, braced ribcage) and have pain in my neck, shoulders and traps. I also have a deviated septum. How is your breathing impacted? Is it during sleep or during the daytime too?
I’m sorry that you have so much going on, & that it’s going to be tricky to fix, hard if you’re in too much pain for the jaw treatment 
@VisibleEvidence @Jess1 Do either of you have a tongue-tie? I had upper airway resistance and trouble sleeping due to a grade 3 tongue-tie. I got the tie released, did some myofunctional therapy to get the tongue working properly and created space for the tongue by widening the upper palate using crozats. I got enough space without surgery or more aggressive devices. check out https://www.zaghimd.com/tongue-tie
Great question! Probably. Who assesses a tongue tie? I’d like to look into it.
Did you also need a styloidectomy?
I’m in too much pain to go to the hospital for the more in depth sleep study. Waiting to see ENT and an OMFS surgeon.
You can just google “assessing a tongue-tie” to find some good images and self tests for starters. Of course I can’t be sure but I think the extensive tongue tie may have been the cause of elongated styloids. I did have styloids and c1 shaves to address compressed IJV.
I will ask the OMFS when I eventually see them. Thank you for your help. The tongue tie connection makes sense and I appreciate you bringing it up here. How are you feeling now after your own surgical journey?
You are so welcome. I totally got my life back from the surgeries. My only unresolved symptom is the pulsatile tinnitus in 1 ear which I now know is from a carotid cochlear dehiscence possibly caused from the elevated pressures over the years. Nothing can be done about so I just make peace with it. Wishing you the best!
Thank you again @Chrickychricky , you are full of so much knowledge and info, we’re lucky to have you still here, sharing & encouraging others 
@Chrickychricky - I fully agree with what @Jules said. Thank you for sticking with us & being so helpful!
Ah I see, a lot of different factors going on. My breathing issues either feel like constriction or full laryngeal spasms that cut off my air. Both scenarios are worse with too much talking, trying to exercise, or having things in my mouth (e.g., mouth guard, trying to brush my teeth). It’s a lot harder for me to breathe lying flat and I sometimes stop breathing in my sleep so we might have some overlap on the positional aspect? I also really struggle to take deep breaths; I have to work hard to pull air down and it’s very much in my chest and neck.
I had a deviated septum surgery years ago but I think it re-deviated but that’s low on my list to address.
@Isaiah_40_31 and @Jules You guys are the real magic sauce in this whole community. Thank you 