Hi @gramos thank you for joining this discussion. I’m so sorry to hear you are still feeling your worst symptoms 4 months post op, and some new ones. I’ve moved the discussion over here for future search clarity.
I am trying my best not to focus on mine at this stage, mindful but not too focussed, to see if this tactic helps improve my day to day experience of my symptoms. I’m definitely noticing things more in this frame of mind which I will note below.
Activities that aggravate symptoms:
use of my left arm
any additional weight put in left hand (such as holding something, even very light)
tilting my chin
neck rotation
sitting or lying without my head supported
too much talking or chewing
walking on an incline, even very slowly
sitting at a desk looking at a screen (trying not to do this at the moment)
looking down at a device
pulling or grabbing something with my right arm or holding something heavy in right hand
Symptoms include but not limited to, increased heart rate, difficulty breathing, stomach acid increase/burning, stomach pulse, persistent sweating, excess saliva (need to swallow), left back of lower head pain, ear pain in around location of SP, lower teeth pain, chin to ear pain (these last two are definitely facial nerve related), left arm tingling/weakness.
When pushed too far like walking a large flight of stairs very slowly, intense pain in left chest which feels like pressure/blood flow restriction. Oh and I’ve also noticed I’ve lost my gag reflex post surgery.
Things that are helping:
wearing soft collar neck brace to bed while sleeping on an angle
not doing any of the things that aggravate me hahaha
heat pack to abdomen
heat pack to left shoulder
wearing soft collar during the day when I feel that the symptoms are ramping up
head supported on pillow (still in recovery mode) 95% of the day, though trying to allow for curve in the neck while in this position. Travel neck pillow is quite good used as a pillow while sitting up, with head kind of in the void at the centre and open end of the pillow pointed downwards.
not leaning down for anything, instead bending knees to get to the height necessary, especially in the shower where my heart rate tends to ramp up with the slightest movement.
if holding a position for a sustained period, ensuring head and full spine are aligned.
if lifting something, trying to hold with both hands and centring the weight.
Thoughts:
Continued irritation or damage to the vagus nerve and other nerves, possibly due to multiple factors, including tethering of nerves from post-op inflammation across the depth and length of the incision which my surgeon has suggested.
Suspect muscular dysfunction due to es, and overworking of other muscles to compensate are cause for a lot of the quick onset of symptoms with movement
Hyoid bone may or may not be involved
Loss of neck curve is a consequence of es movement restriction (I too had the calcified ligament tethering the hyoid)
Vertical misalignment of spine through upper back and neck caused by es (tilting head away from pain/strangling feeling, while trying to maintain an equilibrium in the body and horizontal vision plane) @gramos i noticed on one of your scans that your neck also leans to one side, not sure if it’s still doing this for you.
TOS symptoms caused by all of the above
SP inflammation compressing IJV when in certain positions
Loss of stylohyoid and stylomandibular ligament yet to be stored to brain memory/proprioception
Things to try in the short term:
post surgery manual lymphatic drainage massage/infrared light therapy plan to try to reduce inflammation and scar tissue as much as possible
Regular light massage of incision twice a day minimum. My incision is still very sore though not open at all.
Gentle re-activation of muscles between shoulder blade and spine to help realign spine, doing this by thinking of bringing my left shoulder in towards my spine. I don’t know the name of the muscle here but I have had nerve pain all through here for the last 10 years which has restricted this movement.
Shoulder stability exercises with PT. I just started this today, very slow and limited movements ensuring no activation of neck muscles until i start to see some change in stability.
Practice gentle posture exercises, like lying on a foam roller (supporting length of spine and head) while working on pelvic tilt and subtle core stability.
I’ll let you know how I get on. I have a desk job so really not looking forward to going back to work in the next few weeks. Ergonomic setup will be something I do straight away and trying to practice having regular breaks and a daytime walk.
Keen to hear what you have tried or thoughts you’ve had about what might be causing the symptoms even just the activities.
@BraveKat - Thank you for moving this discussion to a more appropriate topic. Good thinking!
You have done an amazing job of observing your current symptoms & what seems to cause them or what they’re related to in your “activities of daily life”. Working at trying not to focus on symptoms but how to work around them is also admirable. I hope this approach makes a HUGE difference for you as you recover.
Your teeth pain is most likely from your trigeminal nerve & chin to ear could be, too, or it could be glossopharyngeal nerve which makes sense as these two also get stirred up by ES surgery.
I will continue to pray for your symptoms to settle down as your return to work approaches. It sounds like you’ve got some very practical plans for helping your body to feel its best once you go back.
I’m sorry that the list of aggravating things is so long, and that your heart rate is so fast still especially…It’s good that you’ve thought through all these and how you can mitigate them, to a point, it does sound as though returning to work is going to be pretty tough for you
Hope that the PT helps things, take care of yourself, sending you hugs & praying for improvements
Thank you @Isaiah_40_31 and @Jules for your kind messages. From your experience (your own and others progress on here), is it uncommon to have so many post surgery symptoms?
At this point, I’m not too concerned, as I feel like the majority of symptoms relate to the vagus nerve, and I know that the facial nerve (not sure if it’s the trigeminal or glossopharyngeal nerve) was affected pre-surgery too and was definitely irritated/damaged further by the surgery. If I don’t see any improvement in 4 or so months I’ll be a bit bummed out though I know it may need more.
@Isaiah_40_31 how are you doing now? Are you about 4 months post surgery now? Thank you for the tip about placing something under your chin when sleeping on your back. I started using a makeshift soft neck collar which has really helped - so appreciate your continued support
@Jules im very grateful for the link to @GrnyAny’s post. At first I tried to reach out to her to see if your heart rate had returned to normal straight after surgery, as I reads that way, but when I didn’t here back, I realised after a few days that there is no point in comparing in that way. Despite us all having the same syndrome, how it affects us and our anatomy is completely unique. So I just have to wait and see how my situation will unfold.
Here are the simple shoulder stabilising exercises I am doing 3 weeks post surgery. Already feeling a difference - the muscles on the top of my shoulder aren’t pulling on my neck muscles so the intensity of the pain at the incision has reduced.
Two key points are to ensure the shoulder is not rounding forward when doing the exercises (roll the top of the shoulder, the ball of the shoulder, back), and also that the arm is at 90 degrees.
For me, these exercises are being used to strengthen the brain to shoulder connection which has been weakened over the 10 years of pain in this area.
Hi @Blodyn thanks for your reply. Sorry you’re in so much discomfort at the moment. Where are you in your es journey? Will you have surgery?
Are you seeing a PT? I have/had a lot of the TOS symptoms but also the neck discomfort and feeling like I couldn’t find a place to position my head. Is yours a calcified ligament or elongated styloid?
Sitting on a chair without my head supported aggravates my symptoms. I think it has something to do with the neck muscles and possible compression of nerves by the tight muscles. I have posted some simple exercises above that my PT has suggested for me, which help to strengthen the brain/shoulder connection while repositioning the top the shoulder slightly back (as it’s rolled forward and my arm is very heavy). I have noticed a significant difference already in the tension at the sight of my incision, which I presume was also there before the surgery.
I wonder if there are any similarities between your posture and mine?
Unfortunately I also had those intense episodes of ‘death’ symptoms, which I would get when just standing at a museum or gallery or department store, standing looking at the displays. Something to do with the angle of my neck, combined with my posture I think. I also get something similar when sitting on a chair at work and feeling stress from an upcoming deadline or a generally stressful situation. In those situations I get a crazy thumping heart and breathlessness, pain down my arm and in my neck and teeth, similar to what I imagine a heart attack would feel like. Luckily I’m not working at the moment. I’m hoping with PT work and spine realignment work I might not have to experience those again - fingers crossed.
I really hope you can find some ways to manage your symptoms so that you can do more of things you want to do.
I like the exercises you posted & especially that they’re isometric & don’t require stretchy bands, weights or other aids. I may start doing them, too! I’ve had some shoulder issues over the years & went to PT which helped but once things felt better, I stopped the exercises (of course!). I’m pretty strong physically so it’s easy to over estimate what I can lift w/o paying for it later. Sigh…
Thank you for checking on my post op progress @BraveKat. I’m about 6 weeks out from my surgery. I feel a bit guilty admitting that I feel perfectly normal - a bit better than before surgery because my left styloid was cut shorter than the first time around so some nerve pain that had come back is gone. Sadly, the thing I hoped would change has not. It’s my left ear’s hearing loss & loud tinnitus. Like you, I’m planning to wait 4-6 mos to see if anything in that regard improves. I knew the surgery was a bit of a gamble since the head injury that caused the hearing loss occurred almost 10 yrs ago so, I’m not too disappointed.
It’s difficult @BraveKat , at the moment we seem to be having more members with complicated medical issues, vascular and vagus nerve compressions which means that the surgery takes longer to recover from, and there are other issues which need addressing before members feel the full benefits (C1 shave, maybe angioplasty or ballooning, CSF leaks, instability…). With more straight forward ES, the surgery perhaps takes a few months to heal from & sometimes members notice some improvements straight away, but there seem to be less of those cases now, I don’t know why
So you’re certainly not alone in not seeing an instant improvement after surgery, not a nice group to be in obviously, but I’m glad that there are a few of you in similar situations who can support each other…
Hugs and prayers for you
H Bravekat, sorry so long replying!
Thanks for your last post & was interesting hearing more of your symptoms etc. and thanks for your caring words. In a bit of limbo here. Not much ahs come of the MRA, though i think there’s the drawback of it not showing dynamic situations eg. tturning head, looking down, exertsion effects etc. Seeing neuro follow-up in Jan, but in letter he’s basically said it’s up to ENT as the issues seem structural. Anyway, will carry on & I’m expecting to seek opinion from one of the docs on the list who knows. But, yes, we have some symptoms in common, so great if we all update on here as we know more. No I’m not seeing a PT, though did a few years ago after whiplash.
All for now, hope things get more positive for you and in your recovery!
Hi there, I’m just new to this forum. After months of googling, thought I’d found it all (and not a lot) but turns out I wasn’t using the right keywords lol. Anyway, I’m in Taranaki, my GP is Whanganui and she has no idea what she was feeling so referred me in a heart beat (“your not supposed to have a bony structure there”) anyway, the ENT surgeon in Palmerston North does intraoral approach and uses robotics. I don’t know how long he’s been there but my consultation started in November and I’m up for surgery this month after contract CT confirmed what he palpated and my history. I’ve never had surgery like this before (Caesarians aren’t the same lol) so found this forum looking for help on peri-op assistance etc.
Anyway, as you have private health insurance I read, you could see if you could get referred to him for follow up somehow? Apparently people now get referred to him for his approach. I’ve read so much about no ES surgeons around, but there seems to be one now! His name is Naveed Basheeth. Let me know if you want more info.
@Krisnz , we’ve heard of members in other countries having robotic surgery, so it does seem to be quite successful. I would be interested though in how much of the styloid is removed, as with ‘manual’ intra-oral surgery not as much of the styloid can be removed, and sometimes it’s only shortened a little bit which isn’t always enough to stop symptoms…
Hi, thank you so much for reaching out. I’m sorry to hear you are also going through this, but it sounds like your experience has been quite straight forward compared to mine - thankfully.
How long have you had symptoms and do they extend beyond the face/head? I had vascular ES as well as severe vagus nerve involvement, based on what I have read of others experience to my own symptoms. I’ve read that there haven’t been many (if any) cases of this in nz, that are known, in the notes of a small keynote lecture given last year at an ENT annual event. Very keen to learn more about your surgeons experience - I can’t see anything specific about eagles when I googled him but great to know there may be a specialist for it here. Thank you
I hope you are having a lovely week!
Firstly a bit of background, I had undiagnosed eagles for 10 years with symptoms only on the left side of my body prior to surgery in late November 2024. I am now 3 months post op.
I have worked really hard to rid myself of the vagus nerve symptoms I had pre and post surgery (constantly elevated heart rate, occasional shortness of breath, digestive pain and throat constriction) with being very gentle on myself post surgery with a prolonged bed rest and then slow introduction to Physio for both my upper and lower body (to help take the load off my body which is still being affected by a long term hip injury and what could be a rotator cuff injury (possibly caused by weakened muscles due to eagles) with little activity through the rest of the day to help with healing. The pain at the incision site finally got better about 6 weeks ago and a lot of the facial nerve pain and drooping lip from surgery has improved.
However about 4 weeks ago, I must have exerted myself (not sure the exact cause) and deep pain in where I imagine the styloid process was removed by the skull plagued me for 1 week along with reddening/inflammation of one side of my incision. Which was followed by reactivation of nerve pain including the vagus nerve that just won’t settle. Speaking and sleeping sets it off the worst, and it seems to get worse throughout the day not better. The pain and symptoms align to what I have read about vagoglossopharyngeal neuralgia. With a shooting electric pain (the same I felt post surgery) down the left middle of neck at the front (to the side of the trachea) at times but mostly the ‘knives’ in the left side of the throat that I have read others talk about. Prolonged speaking is the worst but it even hurts when I cry. It doesn’t go away when I stop an activity like talking but it feels a bit better. I’m also getting a very fast twitching of my left eye lid which comes for about a minute or two and then goes.
I’m just wondering if this kind of set back is normal? I was feeling in a good place before it happened, each week feeling better than the last (with small setbacks in between), but this one feels like it’s here to stay. The deep pain and reddening have gone but I have been taking celecoxib (anti-inflammatory) off and on for the last week just in case.
When I write it down, I do feel like there is a chance I just really hurt the area which has caused a major flare. Did anyone have any similar experiences during recovery?
I’ve also started to get some pain on right side near the back of the jaw bone in the past two days. If the right side needs attention, could it be holding back the recovery of the left side? I am very nervous to go there mentally as generally I have never had pain or symptoms on that side of my body, and it’s the only thing that keeps me positive and able to get through the day.
@BraveKat - I’m very sorry to learn of your setback. I understand how discouraging that must be! Four weeks is a long time for what you’re experiencing to settle in w/o change. Does the Celecoxib help at all (it’s the only NSAID I can take)? If not, you might consider requesting a course of prednisone or dexamethasone (less side effects than prednisone) to see if that helps get things to settle. A set back to the degree you’re noting isn’t typical of ES recovery, but read on.
Your pain possibly worsens when you cry or talk because both of those cause tension in your neck/throat, however, that shouldn’t be true of sleeping. Have you tried sleeping w/ head elevation again? That might also help even though the position isn’t as comfy as sleeping more flat. Also, ice or heat may be helpful if you haven’t tried those.
I don’t remember if you were diagnosed w/ bilateral elongated styloids, but if so, we’ve noted here that pain/symptoms from a remaining elongated styloid can begin to flare as the operated side is healing. Sometimes w/ bilateral ES, the symptoms are so pronounced on one side, the other side isn’t noticeable until the worst side is shortened. Other times, the over all symptoms are bad enough it’s hard to know which side is causing the which symptoms until one side is shortened.
Again, if you were diagnosed w/ bilateral ES, it’s possible, due to the shifting around of the soft tissues after your left styloid was shortened, your right side is coming into closer contact w/ nerves & causing the symptoms you now feel on the right. We’ve also noted that a remaining elongated styloid can sometimes cause “crossover” symptoms i.e. cause symptoms on the side opposite of the remaining styloid. I’m not suggesting that the pain flare you have on the left is coming from the right side, but it’s possible if the right is causing pain now, that’s contributing to what’s happening on your left side. I acknowledge this isn’t good news, but it could provide a bit of an explanation for what’s going on.
Can’t really add any more info as @Isaiah_40_31 has covered it all, but just wanted to say I’m sorry to hear about this setback too, thinking of you, sending you a gentle hug & praying that this settles soon
Thank you @Isaiah_40_31 for your thorough response. When I read over some of your past responses to other members with post op queries I can see that maybe I was starting to have a few good days (I was actually putting a bit of weight on and looking more healthy) and perhaps just did too much all at the same time. I went swimming for a few hours (casual swimming but a few vigorous movements while trying to play with my son), increased the weight on some machines under physio instruction, went to karaoke with my son and probably some other things all in the space of a few days…because I had no pain for the first time in 10 years (nerve or otherwise). Prior to that I was taking things very gently (barely getting into the swimming pool for example so as not to scare my nervous system)…that kind of thing. Maybe I simply did too much for me and where I’m at. Fingers crossed it’s that simple.
I’m hopeless at taking medication regularly but think the anti-inflammatory has worked a bit. So I’ll try to keep that up for the meantime.
It’s strange, I’ve definitely noticed some link between my nerve pain flares over the years and instability of my shoulder on the same side. If I move my shoulder and I hear big cracking sounds in my collarbone or shoulder joint, that’s when I start getting the glossopharyngeal, trigeminal and vagus nerve pain flares.
The right sided pain jaw has continued and at times spreading across my nose and into the temple. It comes and goes though at this point based on head position so hoping I have at least time to make better recovery on the left before I have to address that. This journey is so trying!! I feel like I have missed my entire 30’s because of it. I’m living like someone who has lived a long life already…it can be very disheartening at times.
Absence of pain after having pain for so long definitely can lead to overdoing just by virtue of the fact you finally feel good. I did the same & paid for it for a while afterward. I hope that’s the simple answer to your symptoms flare & that is subsides as quickly as it appeared. The good part of this is that you had a few good, fun days with your son & got to enjoy doing some things you have avoided for quite some time. I expect you’ll be able to get back to those things more full time once your healing has progressed more solidly.
Me, too! I’m glad the NSAID is helping you.
Interesting. Your shoulder/collar bone join at the acromioclavicular (AC) joint. I’ve had problems w/ my right one off & on for years, but it seems isolated specifically to that joint. I also had pain in my nose from my TN. I mentioned it to my ENT, & he was dubious until he stuck his little light up my nose & confirmed it. I know you said you’ve done PT for your shoulder. Has that helped reduce the cracking?
I’m sorry for the time you’ve lost due to ES & its many twists & turns. I’m glad you’re on the healing end now & will continue to pray that your future is pain-free so you can be foot-loose & enjoy the remainder of your 30s & beyond.
We’ve all been there, feeling so good after such a long time that we’ve overdone things, it’s totally understandable…I really feel for you & other other members like @virenlondon & @Warrick who have young children & you’re missing out on being able to do stuff with them, hugs to you & praying that this is just a frustrating setback & soon resolves
Thank you for your reply. Yes it was so nice to have a bit of fun with him, he’s always asking me to play and I just can’t (because of how I feel)! I’ve had to put a timeframe on it this week to give him more clarity on how long it might be before I’m well and able to do all things he hopes we can do together
My symptoms are settling very slowly but continue to feel a deep ache and pressure in around the skull/ear, where I imagine the surgical work was undertaken. I reached out to my surgeon (whose in a different town to me) about the steroids suggested but hes said that I need to see my GP for this sort of thing. Very much feeling like I don’t have anyone in my corner anymore on the eagles front …and he also makes reference to anxiety when I’ve asked questions post surgery about pain or the spontaneous panic attack I had in December. It’s not a nice feeling to be back here again, trying to defend myself and fighting for someone to take me seriously. Hoping the path to recovery is smooth from here on.
With the steroid, would you know what kind of dose is typically suggested? I will likely go with whatever I am suggested by my doctor but would be good to have a point of reference.
I’m 40 this month haha but will keep my fingers crossed that I’m better before then and go into it symptoms free and full of life !!
Thank you so much Jules! Yes it is hard for me as it affects our bond for sure. It definitely affects him too…It’s nice his dad is such a fun playmate. Just hope I can do more soon.
Me, too! I’m glad the NSAID is helping you.
