I have Eagles surgery in about a week, and something I am unclear on is how a uni-lateral styloidectomy can impact facial symmetry positively or negatively?
Personally, I have experienced some visible face changes happen on the left side likely due to Eagles and also CCI.
I had significant facial asymmetry when my atlas was chronically dislocated but now that my head is now “on straight”, my face doesn’t look as wonky. It is still a bit “smaller” or flatter on my symptomatic side and my left eye lid is slightly droopier but it’s improved allot from how bad it used to be.
However, I still have a chronic left masseter spasm which is a bit visible and which I’m hoping surgery may help with.
I don’t mind temporary facial issues after surgery but my question for those that have had surgery is, did the surgery cause any long term facial changes or asymmetry?
I’ve been so focused on symptoms that I didn’t think to talk about this with the surgeon at my consult.
Thanks very much in advance for any feedback from those on the other side!
Typically, surgery can help facial asymmetry recover that’s caused by the facial or trigeminal nerves being irritated, however, even with nerve monitoring, there can be instances where a nerve needs to be moved out of the way during surgery thus causing it to be irritated or further irritated. If that happens to be the facial nerve, then a same-side lower lip droop &/or mild eyelid paralysis can occur. These situations often clear up w/in a few weeks but sometimes can last several months while the nerve recovers.
I ended up w/ facial asymmetry from my first ES surgery (Dr. Samji). My glossopharyngeal nerve was wrapped around my styloid, & the process of moving it so my styloid could be cut shorter left it quite angry & left me w/ a half paralyzed tongue & a whopping case of First Bite Syndrome. I was also left w/ a slightly atrophied masseter muscle on the right side which would be due to trigeminal nerve damage. I think I’m the only one who notices the asymmetry though. Just call me vain.
I went into my IJV decompression (Dr. Hepworth) w/ a droopy left eyelid & saw that situation improve once my IJV was decompressed.
Oh gosh! I’m so sorry to hear you came away from the first surgery with what sounds like either long standing facial asymmetry on one side. I mean, I can relate as I’ve lived with similar. The temporary facial issues don’t concern me as much, but I guess not knowing initially if they are temporary or not seems nerve wracking. I’m sorry you’ve dealt with that even if the changes are kindof small.
I don’t think it’s vain at all. These are our bodies and faces and not wanting to come away from surgery with visible changes we don’t want is valid. Not to mention changes to your face! Which seems like a much bigger deal than something easily hidden the body.
It sounds like it can really go either way though. Like how with your second surgery, there were the postive eye lid improvements.
I have too many reasons to get this surgery in terms of debilitating symptoms to not get it, so I’m just hoping some of these negative effects don’t happen.
Also, first bite syndrome sounds extremely unpleasant but just about every Eagles patient I’ve talked to said they experienced it after surgery, so I understand it’s very common.
The facial nerve damage from surgery does happen occasionally & can cause some facial paralysis & asymmetry , but usually resolves with time. Other causes aren’t very common, there’s been occasional mentions of muscles appearing to be swollen. Hopefully yours will improve with time after surgery!
First bite does vary an awful lot with intensity so I hope that won’t be too bad for you afterwards as well…
I had my right styloid removed in early August and woke up from surgery with full facial paralysis on my right side. It was very scary as I had only heard of minor asymmetry/lip dropping/etc as possible side effects. My surgeon had actually never seen my side effects prior to me experiencing them. With tests and time, we deduced that it was indeed from facial nerve irritation/swelling. It took me about 3 months of patience and nerve OT techniques and many many appointments to see really strong improvement in my muscle function. I was tentatively cleared from regular appointments by all my doctors right before Thanksgiving (so almost 4 months post op). I am almost 7 months post op now, so I have about 5 more months of being in the nerve recovery window. But I have full function of the right side again, with only slight synkinesis and still some fatiguing on the right side (but my right facial muscles weren’t working for several months, so fatiguing makes sense). I still keep up with my facial massages that my OT recommended and I may be getting some Botox in the right side where the synkinesis is occurring. But we are revisiting that at the end of the month when I go in to see my nerve OT next. Overall, my daily life is not extremely impacted by any of this anymore though, and my care team has been excellent through it all. This was long and it definitely does not seem to be very common to have such an extreme case of nerve swelling but I hope this gives you a better idea of potential post op symptoms.
Thankyou very much for the feedback and I’m so sorry this happens to you. Waking up with half a paralyzed face seems like it would be very disturbing. So the paralysis is gone, but you still have some facial symmetry and muscular dysfunction on the right side 7 months out? I’m not familiar with synkinesis so I’m not sure if that’s nerve pain or something related to the muscular function. I’m glad to learn that things have improved allot from where they were though. I don’t feel like I know enough about all the possible impacts of this surgery, but since it’s happening in a few days, I’m likely going to find out just from going through it. May I ask who your surgeon was? I’m going to Hepworth so not sure if you’re also one of his patients.
I don’t have any facial asymmetry anymore and haven’t since about month 5. Synkinesis is when a voluntary muscle contraction causes an involuntary muscle contraction elsewhere. In my case I have had very slight synkinesis at the inner corner of my right lower eyelid and some in my neck. It is very slight, to the point that my OT was surprised I even noticed it at all. (I am a singer and therefore very aware of my body, which is probably why I even noticed) Synkinesis is not uncommon for long term nerve recovery. The reason Botox can help that is that it calms the muscle overactivity. For my specific case, the hope is that we can delink the muscles that are involuntarily contracting whether that’s with exercises or with Botox. Because I noticed the synkinesis while it’s so slight (much of what I’ve noticed is so slight that I feel it at the muscular level more than it is even visible) we have been able to intervene early, so again I’m kind of a weird case on this part too.
My surgeon is Dr. Cognetti. He is fantastic and was key in helping me through all this and assembling my nerve care team. He went above and beyond (even getting the hospital to cover tests post op that my insurance would assist with). I see him again in May for a follow up but so far all my ES symptoms have resolved on the right side and I have not had problems with the left side at this point (though I’ll be in the lookout since that side is elongated as well)
I’m so pleased that the facial nerve has healed well @Sammi , and that you only have slight effects now…good too that you don’t need the other side removing atm! Thanks for your update
I had my left styloid removed at Mayo, and I did have some paralysis of the left side of my lips and cheek for a week or two. My eye worked fine and my tongue was fine. I had a little trigeminal neuralgia for a week or two as well. But that all went away, and the First Bite Syndrome resolved completely almost immediately. I have some lasting glossopharyngeal neuralgia (that I had before the surgery as well), so I have been referred to the Mayo neurology department and they are redoing all my MRIs to check and make sure everything looks okay structurally first before traveling down any other treatment avenue since I had ES. Anyway, we’re all here for you and with you, and we’ll be thinking of you in your surgery! Let us know how you’re doing when you can <3
@Sammi
Really great news about how well your facial nerve has recovered! It sounds like you helped by being diligent w/ the therapy that was recommended. I hope your synkinesis troubles soon dissipate as well.
Your recovery sounds very remarkable, @Rainbow. I’m glad your post op “upset nerve” symptoms didn’t stick around very long (except the GPN). I hope if there’s anything irritating your GPN it’s obvious in your next round of imaging so that can be dealt with. I hope you can become pain-free soon.
That’s great you don’t have it anymore! Thanks for the explanation. Not directly related, but I have a 24hr spasm happening in my left masseter which is the side where I have significant jugular compression/ ES type issues and in the past( wha before eagles diagnosis), I tried fro a period to get Botox in it to stop the spams. Botox is very effective for that ofcourse, but for it caused so much muscle atrophy in my face that it looked weird and since it also didn’t help my facial pain which was one of the reasons I tried it, I stopped. But again perfect drug for a muscle spasm. Also the masseter muscles are huge so when they atrophy, it’s very noticeable( some people get it done on purpose to thin their face which is hard to imagine but true), so getting the smaller muscles treated your talking will prob not even be noticeable.
I’ve heard good things about Cognetti and set up a consult with him months ago but we was booking out to April for consults and this surgery date came together much sooner for me. Glad he was a good Dr for you.
I love hearing this Rainbow! I mean I’m sorry you had the post op period where you had some paralysis as I’m sure that was nerve wracking, but glad it cleared. Having TN post op also seems like it would be a bit scary. The TN point is very interesting as I have 24hr TN on one side as one of my main symptoms which* I assume might be caused by the Eagles( although only time will tell), so I wonder how people who already have TN respond to this surgical intervention. Guess I’ll find out, ha!
I really hope you can get some help with the glossopharyngeal neuralgia. Not formally diagnosed with that, but I’ve got pain in glosso areas as well so I guess, maybe that’s also an Eagle’s thing/ just hadn’t thought about it. Thanks so much for your kind words and well wishes, it means allot! Especially since I feel like the only people who understand these conditions are those who have lived experience with them. Anytime I explain this surgery to someone who isn’t familiar with the condition, their eyes cross.
We’ve had members who have TN & it’s resolved with surgery, & there’s at least one research paper with a case study where TN went. Mine improved with surgery although never went completely, but I have other neck issues and that contributes.
HOORAY! You get to be first in the day! Later patients sometimes get their surgeries pushed out several hours as Dr. Hepworth can only guesstimate how long each surgery will take. Mine was scheduled at 1 pm & started at 4:15 pm.
