For past month or so I have had an array of facial abnormalities that I have kept under wraps until I sorted them out … I thought they would go away but it isn’t happening ..so sharing in hopes someone has any ideas
I had some mild paralysis right after surgery and weakness that still persists but unless people are looking for it can’t see it unless I am real tired as fatiguge increases it ... face does what it should aside from a droop of right eye and mouth that doesn't smile equally when I am tired ... tiredness seems to exasperate any if not all symptoms I have from swaggering pirate walk , headaches , dry eyes and metal mouth
for past 4-5 weeks I have had alot of facial twitching to right side of face (AN side ) ...corner of mouth , cheek and eye ... and my eye is either real dry (no biggy ,I have drops and goop ) or it runs and I look like I am crying out one side of my face ... metal taste in mouth is stronger than it had been ... all these things have occurred since surgery but had ( I guess for lack of better words ) settled out ... I am now seeing a return of them and with it being 34 months out I find this unsettling …and have ignored them as best I could …ostrich in the sand approach … if I don’t acknowledge something it doesn’t exist
but for past 3 days I have had the sensation that the right side of my face from cheekbone down to lower jawbone is wet ... I keep wiping hand across my face , checking and I know after first day that it is not wet but check anyway... Do you know the feeling you get when an IV is started and fluid starts going in ... that cool wet feeling that feels like it is on the outside when in reality it is on the inside
that is how this feels ...cool and wet ...
Also over last few days , though I guess it would fall into the hearing category , when I turn my head , stand or sit , the tinnitus
teeeeeeeeeeeeeeee in my deaf ear turns up then immediately back down …that sounds confusing but compare it to turning the volume knob on a radio (if you can find one with a knob) quickly up then right back down to the same level the volume started at …this seems to have just do with my movement and may not be tied in to rest of what is going on
I saw my doctor this morning and he is worried about either swelling , fluid or re-growth … I am hoping it has to do with weather changes … don’t want it to be anything else … he wants an MRI but insurance won’t pay for one unless it is an emergency … and it isn’t at this point …
after him talking to a neurosurgeon and a rheumy in Nashville , they feel it may be sinus fluid build up , allergy or the facial nerve is just damaged and this is normal for a damaged facial nerve …
I have not been sneezing and have no drainage and I am breathing fine …no stopped up anything that I can detect…I have been put on steroids again and an antihistamine and will go back in 14 days to report if things are the same worse or better … then we will talk about an “emergency†if there is no improvement
I am afraid of return of AN …it is unlikely but not unheard of according to neurosurgeon that was consulted …my surgeon right after surgery , would not say he got 100% of tumor saying a sand size piece could have gone undetected even though a thorough search found no remaining tumor tissue … he said eh got all visible tumor and none has been seen on any post-op MRIs … I guess all I can do is hang tight for next few weeks and hope for best … just had to post something as fear is rising … I have a sick feeling in the pit of my stomach and it has grown all day
Thoughts , input , ideas , experiences …
