I wonder if anyone can help me with my very confusing symptoms. I had a CT scan with contrast (neck) which showed styloids to be a normal length, under 2cm. I have my left styloid (confirmed by ultrasound) palpable through the tonsil fossa, but this may well be due to stretching of the tonsil fossa tissue. I know it has stretched because it is super thin and the arch at the back of the mouth has partially collapsed. So I started off with definite glossopharyngeal neuralgia symptoms and got relief from 100mg Amytryptiline a day. Then the symptoms started changing to tissue soreness in the mouth, unable to swallow without pain on the left side, tonsil tissue really thin against pointy process. I also now have throat tightness and strangling feeling whenever I bend over, making me feel dizzy and feint and that i cannot breathe properly, pain when taking in air. This alone is giving me panic attacks. I also have pain radiating down my neck, shoulder, arm and breast. I also have a popping at the hyoid where something is getting stuck every time I turn to the right and intense soreness (swollen lymph nodes). My first MRI scan showed multiple lesions on my brain suggestive of vascular difficulties, yet all my blood tests have come back normal.
I have seen London consultant who has agreed to do a styloidectomy and said he could look at the hyoid whilst he is at it and ‘nibble off’ a bit if required. He said the hyoid looked normal on the scan and the ultrasound. I dont however feel that I have managed to get the full extent of my symptoms across with regards to the hyoid and the strangling, so I will book another face to face appointment. I have also seen the cambridge consultant who has an excellent understanding of all things vascular/neurological and who I believe would do a really good CT venogram for me, but if my main problem is the hyoid, he would not operate to sort that out, he would have to refer me to a colleague. He is however interested to see whats going on in terms of my vascular symptoms and vagus irritation (burping, food getting stuck).
My problem is that all the scans and MRI’s are coming back ‘normal’ and yet I am in debilitating pain which gets worse by the day. I don’t think I necessarily have Eagles Syndrome - but I have styloid/hyoid symptoms due to tissue changes on the left side. It seems unless you are in the position that causes the problem (e.g bending over) the scan will continue to look normal, so how do you get around that other than to let a surgeon loose to take a look on the day?!
I feel really stuck between expensive consultants who, quite rightly, dont really know what to do with me. I know I need the styloid taken out, which both consultants say they will take to the skull base, externally, because it will eventually break through and its very uncomfortable to eat. However I dont know what to do about the hyoid / strangling/ vascular symptoms other than to go back and see them one more time to discuss those. I am so desperate for even a mild amount of relief as I have two young children and they need me to be functioning and vaguely happy.
Any advice or thoughts on symptoms would be really welcomed.