Hi everyone…I am so happy to have found this group!!! I have been reading as many posts as I can over the last few days…you are all rock stars. Thanks Jules for the private messages of support - much appreciated.
Long story (as like everyone else :-)). In short…my symptons are:
- I have been struggling for years to open my mouth - I really struggle going to the dentist and have had to take Tramadol before going, in the hope that I can keep my mouth open without pain. I also struggle to close my mouth straight as the mandible shifts to the left when I try to close my molars. This causes a clicking and a sharp pain up through the jaw joint to my temple and eye.
- I have neck pain which I put down to a car accident back in 2010 but nothing shows on xrays. I was at home last year for a week unable to move with awful shooting pain in my neck (both left and right) and was taken to A&E and given double strength tramadol and 2 volataren shots to relieve the pain. Since then, I have a few recurrences but I get to management very quickly and have managed to avoid a repeat of last year.
- A “funny” feeling in my right ear - like numbness but not, or like I have been hit and there is that dull widespread fuzziness in sensation in the cheek and ear region. When I scracth my skin by my ear, I can feel it but it feels like a dull sensation rather than a clear “scratch”.
- A weird lump sensation under my chin which has been there for at least 5 years - I thought this was a recurring cyst from occasional blind spots on my face but it sits just above my hyoid and I can feel it when I put my chin down but am not able to feel it from the outside if I use my finger over the skin. So - something inside getting in the way of being able to put my chin down. Not painful but uncomfortable.
- I have been unable to turn my head to the side (both left and right) for years. If I am sitting on my bed and I need to look at something hubby wants to show me and he is slightly behind me to my right, I have to actually get off the bed and face him front on as I am not able to move my chin past my shoulder.
- Terrible headaches up through my right temple, behind my right eye and into my forehead.
- Loss of sight in my right eye occassional (a few weeks ago actually).
- A hard lump - small - about 1cm (that moves so not a tumour) on the right hand side of my neck. Not visible or sore but can feel it.
- A couple of times I have felt like there was something in my throat - but like deep down - not in the field of vision when I open my mouth.
- I have had 3 bouts of loss of consciousness over the last 4 years - collapsing in public with sudden loss of consciousness (doh - fainting!).
A few other things:
- I have a hiatus hernia which has caused issues for me with swallowing - diagnosed 4 1/2 years ago. I take no meds for this though as I do not struggle with reflux. This could have resulted from the aforementioned car accident in 2010.
- I have recurring kidney stones since 2012 and have had 3 bouts of urosepsis (1 in 1996 and 2 since 2012). Have been stone free since Feb19. I have medullary sponge kidney which I have since researched means I have a pre-disposition to the formation of kidney stones.
- I am severely aneamic but manage it with regular iron infusions.
Anyway - all the stars aligned. I went to the dentist a few months ago for routine dental work and cried my way through the appointment due to me jaw being so sore. It felt like I was being stabbed in the temple (granted I do not know what that actually feels like!). My wonderful dentist referred me to an oral specialist, who I saw 3 weeks ago. I had an MRI that revealed my left condyle is longer than the right and that I have a disc issue on the right due to the misalignment of the jaw caused by the longer left side. I need a mouth guard that will offer relief at night (I don’t grind my teeth but they want to relieve the pressure on the jaw).
As part of my follow up visit with the specialist, she asked for a CT Scan to check the TMJ properly. It was as part of that scan they diagnosed “ossification of the stylo-hyoid ligament on the right extending to the level of the hyoid with its tip in the submucosal location adjacent to the right vallecular margin…consistent with Eagle’s Syndrome.”
In speaking with her yesterday, the only option is surgery now and I am awaiting the urgent meeting with the surgeon on Monday (07Dec). I have done as much reading as I can and now I guess I am worried. The op risks, the scarring, the recovery, the risks more than anything…I am not too worried about the scarring but more about the dangers of the operation (appreciating that they are different for intraorally and externally) and the recovery…
I have no idea if my surgeon has even dealt with this before (given the stats, I worked out that only abut 40 people have this at any time in New Zealand). I have so many questions…
Not sure if I should even consider the surgery route if the symptons I have listed above are livable. I have put up with these symptons as I measure everything against renal colic which was @&*(^#&^% horrific!!! Pain scale at times was 15/10. Whereas these symptons have been 5/10 (the dentist visit took me to 9/10 I would say). But as isolated symptons - are they livable? How do I know?
The other point (sorry) - I am hypertensive. My “lovely” doctor with FA bedside manner told me that I was obese and that fat people do not have any self control to bring their BP down without meds. I lost 21 kgs (42 pounds) and my BP went up. Now in my reading I am wondering whether this is actually carotid sinus hypersensitivity. So I had no hope of ever managing my BP without meds, despite weight loss, exercise and healthy eating regime…
Whilst I have been writing this, I am seeing so many connections - things that I thought were unimportant/non-related. No doctor has put any of it together, and I didn’t either, and I was always worried about listing everything because I saw all of it as my fault. Embarrassed about my weight…
Anyway - I will know more of my next steps in the coming days. This is all so completely new to me and could a storm in a teacup and the surgeon would say “nah - nothing required”…mmmmm we’ll see!