Funny enough my CT/MRI reports both stated they could see evidence of my canal wall down procedure indicative of mastoidectomy, but also that soft tissue was in the ear cavity on superior aspect of tympanic membrane, with ossicular chain distortion. I can see this easily on the CT/MRI myself. However the report doesn’t say if the soft tissue is a result of the grafted membrane, or is infact some regrowth of cholesteatoma or residual disease. My guess is they will say it could be either, so a second, more exploratory surgery will be necessary. Was hoping to avoid, I know dysautonomics do not handle anaesthesia well (I was tachy and v nauseous after first surgery). Anyway one bridge at a time!! Anyway, its unlikely my symptoms are related to this in any way, unless fluid in the ear is causing some dizziness.
I’m just looking at what triggered your dysautonomia to suddenly render you so ill. I can’t help but think that infection is involved somewhere and could be ‘sorted’ with anti-biotics. In my book, something has substantially affected your intracranial pressure. There again, I suppose a blocked ear would only give you one mechanism by which to adjust to the change in pressure.
Regards
Barbara
(UK)
Yes I have been wondering why on earth now. I thiink it could have started about 18 months ago. It was around the time I was having my ear troubles, a nasty discharge and a gruesome looking ear, with polyp, led me to ENT. I had an infection, which they treated. A few weeks after this I started to develop dizziness (which I hadn’t had during the infection, though cholesteatoma was present), plus coming over peculiar during or after eating. The latter passed but the dizziness continued sporadically prior and after my op in April. Last year my headaches increased in frequency and intensity, and now and again I’d have days of bladder frequency. Then in December I was getting mild discomfort in my chest, this discomfort creating the sensation to cough, lump in my throat sensation, start of appetite loss and weight loss. Then boom on landing it all took a nosedive getting lots simultaneously, plus the new symptoms (neurological). Tests don’t reveal any significant infection, I look ok if thin on some days, then pale on others. I take my temp twice daily and it has crept up to 37.5 on a few occasions otherwise it hovers around 36.8-37.2. Not necessarily abnormal. Don’t feel feverish as such,. Many people have asked me do you think it’s your ear, the change in cabin pressure etc. It could be seeing I was ill on arrival, though it didn’t happen during my Bangkok stopover. I also came to Australia the previous Christmas and new year too, pre-op, and experienced no probs. but I was definitely less well preceding this current trip and therefore weaker maybe. That could be the answer…. I may see if I can see an ENT specialist before I fly, just to see if ear looks ok, no signs of infection or fluid. GP said it looked ok, dry etc, but not sure they have much clue. The symptoms when I look down in flexion come and go too!! All a mystery. With cholesteatoma, it can erode bony structures in the middle ear. Mine hadn’t prior to surgery last April. It can also erode the thin plate of skull superiorly, and that can lead to exposed meninges. Thats what makes the condition dangerous, risk of brain abscess, meningitis etc.. I’m hoping that would have been seen on my MRI/CT though. Would be unlikely given they removed disease, but regrowth can occur. It does affect you psychologically, losing confidence.