Hi all! Thank you for accepting me into this incredible community and resource. Disclaimer: this is long and my brain fog/inability to focus has probably led to many typing mistakes.
I am an almost 40 year old who has been experiencing pain on my left upper body for over 10 years as well as a host of what I had thought were odd unrelated symptoms. Prior to this I have had ongoing reflux and oesophageal motility since I was born, as well as frequent ear infections during childhood, and ongoing left ear sensitivity. Since I can remember, my throat makes a noise when I swallow (small or large gulps) which is quite embarrassing in a quiet room. Iāve learnt to tilt my head down to try to do it more quietly. I also have prominent visible cartilage of the throat and a very visible female Adamās apple - again something Iāve been incredibly self conscious of since a young tween. I have a tight feel on the join of the jaw to the neck on my left side, like I have a noose around my neck on one side, but I canāt remember if this was experienced following removal of my wisdom teeth about 11 years ago or before that. I have a cracking sound in my ears when I swallow too, and have struggled to put on weight my entire life thus far. I sit between 41.5 and 43kg and even while pregnant with my son, only got to around 52kg. I am short in statue so it kind of works but also something Iāve been self-conscious of as a young teen/older adult as I imagine most would assume I have body image issues. I eat normally but have never enjoyed the experience much, as food gets stuck mid way down my oesophagus when I eat, and takes numerous swallows to continue on its journey. Over the years Iāve learnt to avoid wheat as it sticks more than other things.
Anyway fast forward to 10 years ago when I started to get left rib and shoulder pain, as well as an inability to open my jaw, feeling like I canāt clear my throat properly and a sudden inability to have hot showers or sleep on my stomach. Followed by constant ache in my left temple, left ear, left jaw, bottom teeth, inside mouth under tongue on left side, left eye strain (particularly when turning my head), left cheek and area between eye and nose on left, muscles and ligaments down left front and side of neck, left back neck, and a general feeling of the back of my head and face pushing toward each other and crushing anything in their path. I have brain fog, my voice is strained after only like use, I sweat profusely when I am cold or the slightest bit anxiety (eg. I have an appointment to get ready for), and feel like I am so limited with what my body can withstand these days. My heart rate is constantly elevated ~80-90bpm at rest, even when sleeping, and then higher when moving. I went to the hospital this week as I was woken by it at a very high rate, admitted into the emergency department with it at 150bpm. I was later discharged because my ecg and bloods were normal and blood pressure only slightly low.
I am at my wits end. I have seen respiratory, heart, oral, spine, muscular skeletal and ent specialists. All imaging (and there is a lot) are unremarkable except for an elongated styloid process on the left side at 34mm. I was told I donāt have eagles because my tonsil doesnāt hurt when palpated. Iāve been driving my health journey because no one else is. Iām constantly blown off and made to feel like Iām just anxious - one female doctor even said I needed to see a psychiatrist when I explained all of my symptoms to her at once, and that was the end of that consult.
A few years ago I have had an episode where food, water, pills were getting stuck in my throat, gastroscopy was clear so I decided to go on a soft food diet for a week and then alkaline diet for 5 months which helped. I also feel like I have TOS at times and have found some TOS exercises to help with pain. But MRI of brachial plexus was clear.
I feel stuck and very alone - despite having loving family and friends.
I managed to get a consult with a neurologist at the end of my recent hospital visit this week who said she didnāt think my symptoms are neurological but that sheād be happy to be a point of care for me and has organised a ā MRI brain and cervical spine and neck with contrast and neck and intracranial angiography and venographyā. I have already had a MRI brain and MRI full spine as well as CT of the neck, the latter showing the āelongated styloid process with calcified stylohyoid ligament suggestive of eagles syndromeā. And have had about four other mris and one other ct in the last 10 years. Do I really need these images and to be exposed to more harmful waves? Or should I just push for surgery with someone who recognises ES based on symptoms and elongated styloid?
I also have a consult with a vascular specialist in 5 weeks but Iām struggling to use my head/neck at the moment due to so much pain (being in bed is best right now). Again do I need the vascular input or is it better to push for surgery instead?
I am very fortunate to have private medical insurance and so my consult and imaging to find the elongated styloid was through self-referral and my query about Eagles or Ernst Syndrome. I just donāt have any medical knowledge other than the internet so itās hard to know what direction to take next. I believed the ENT specialist when he said I didnāt have ES because of my non-existent tonsil pain. So 2 years on, im still in the same place.
Any thoughts would be so greatly appreciated.
Apologies for the length of thisā¦x
