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.