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!
