Hello all!
I am very much unsure if this is the right place for me. I am also pretty desperate at this point. Whether or not I have ES is very much up for debate. But, I’ve had most other common conditions that it could be ruled out over the past 10 years; with my GP now wanting to diagnose me with CFS/ME (which as we all know is a diagnosis of exclusion) and doesn’t make sense considering much of my symptoms are unilateral. Instead, I’m pretty sure it’s code for “we don’t want to spend anymore money on you and don’t know what to do”.
I’ve seen an ENT, Oralmaxillofacial surgeon, Dentist and Physio, and have had extensive MRI’s of the entirety of my head and neck region which have shown absolutely nothing. I have also had an orthopantogram very recently, and last night upon reviewing it, discovered what might be a calcified superior end of the stylohyoid ligament on the left? It’s difficult to tell, as the image cuts off the right one which could be used to compare, but it does seem to fit with some of the orthopantograms I found that supposedly show ES. I’ve included the image in question at the end of this post.
I’ve had swelling on the left side of my face for so long now. The swelling goes up and down, literally many times a day, and within minutes. I’ve always thought this suggests compression of a vein, but whenever I’ve mentioned this to NHS staff, my concerns have been immediately dismissed as I don’t fit the box they’re trying to push me in to.
I’ve recently managed to identify that my posture is a contributing factor, and have corrected my forward neck posture and sleeping habits. Whilst this has helped it hasn’t resolved the symptoms entirely.
It’s a little embarassing actually that this simple change has eleviated my suffering to a certain extent! As I was trained as a physiotherapist (so I should have known better!). But I became so caught up in specific changes to the muscles in and around the neck that I wasn’t thinking globally (whoops!). That said these ongoing health issues are what knocked me out of university three times. It’s rather impossible to treat patients and have reliable clinical reasoning when your brain continues to disintegrate on a daily basis and remain completely unreliable.
To complicated matters I also have ADHD and Sleep Apnoea. My cognitive ability used to be my defining feature, with boundless abstractive ability, and now I am a shell of what I once was. I struggle somedays to recognise my own internal monologue it’s that bad. Sometimes that monologue is entirely absent, which is so far removed from who I was 10 years ago, it’s honestly quite frightening. I have at times considered whether or not this is early onset altzheimers.
My current symptoms, which I always fail to recall completely so are probably not exhaustive, are the following:
- Left facial swelling, over cheeks, left side of lips and left ear that coems and goes, sometimes within minutes, seems this swelling comes and goes dependant on posture.
- Unexplained swelling was notible two years ago in an MRI I had done, specifically in temporalis, masseter and lateral pterygoid (have since worked on these muscles, stretching them, then strengthening - symptoms remain unchanged)
- Worse symptoms overall when looking down and/or turning my head to the left.
- Left sided globus
- Clavicular, thoracic and cervical pain on the left side.
- Left sided tinnitus that comes and goes with the other symptoms (occasionally pulsatile)
- Left eye pressure (yet no apparent changes in intraocular pressure according to optometrist)
- Left ear pressure
- Left eye blurriness which is more of a lack of awareness out of this eye which is weird and again seems to come and go with other symptoms
- Dizziness when these symptoms are at their worst
- Itchiness under skin on left side of face, neck and head, that isn’t extreme and comes and goes.
- Heart palpitations that come and go depending on severity of other symptoms (but also rarer than these other symptoms).
- A partial right bundle branch block that I’ve acquired some time in the past 5 years (didn’t appear on all of the previous ECG’s I had done prior to this).
- Moments where something calcified breaks up, and can hear the breaking up of said calification. Yet, the apparent location of this is below my ear and not in and around the TMJ as you would expect for tendinopathies of the muscles of the jaw. I have also had tendinopathies elsewhere which have not ever produced these sensations.
- Bilateral floaters and visual snow syndrome (for at least 10 years)
- Left sided production of liquid in ear, eustachian tube and sinuses without apparent infection or cause, that clears when other symptoms in this list disappear. This liquid is often thin and then mucusy depending on hydration.
- TMJ clicking when chewing, yet no disc damage or apparent mechanical issue per two MRI’s of this region, one specifically investigating the TMJ (however I have disc displacement on the right side with reduction, which causes no symptoms!!!).
- Very little pain, perhaps 1-2 on VAS, under ear and around throat
- Sensation of being strangled but on one side only
- Tendency to choke more regularly (but still a rare occurrence and accoridng to MRI - not due to any kind of obstruction in the airway).
- Left eye lacrimation
- Unilateral (left) and bilateral tension headaches (more of a rare symptom in comparison with others in this list).
- A single episode of fainting and losing sight out of both eyes three years ago triggered I think by doing the washing up and stooping over the sink looking down.
- Cognitive issues, word finding, speaking and critical thinking impacted
- Dissociation
- Personality changes
- Changes in my voice which come and go (singing too interestingly)
Please feel free to ask me if I have “x” symptom that’s common for ES. As, due to the cognitive decline I’m experiencing and the executive dysfunction that comes with ADHD, I really struggle to recall or identify issues until prompted to do so. I’ll probably continue to add other symptoms today as they occur to me.
Honestly, this lack of ability to recall symptoms makes self advocacy in any healthcare setting that isn’t the most welcoming, almost impossible, and humiliating and traumatic at the same time, which then only reinforces the executive dysfunction that’s causing the lack of ability to recall worse (as it seems to be connected with self doubt). Bloody horrible cycle to be in but there we go.
Sorry for that probably rather depressing read and well done for getting this far! Any and all general thoughts are welcome and please let me know if you think I should pursue this line of enquiry. Thank you in advance for anyone who takes time out of their day to respond, you’re a diamond :).
