Hi Barbara
I shall have a look at Dr Myhill’s work. It’s intriguing. You would think her work would have far reaching implications for all chronic pain syndromes. Can I ask what treatment you were given? Are we talking replacement enzymes, that sort of thing or more functional treatments? Is beyond me….
My GP looked in my ear, said it looked ok. My operated ear does feel a bit squelchy and full have to say. Do I just go the whole hog (I’ve spent enough, it’s not free here, surprise surprise) and have a consult with an ENT surgeon, get him to look at ear, plus reviews scans. 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.
Anyway medicine yes, I qualified but didn’t pursue a few years back. I have been chatting to Dr Diana about this, and I believe that due to bubbling autonomic problems I had much lower threshold for stress. I didn’t last long after qualifying, which is sad after training so long and believing I could be one of the good ones. I’m definitely human. I have done various things since, but gradual decline in health and depression has prevented me making any strides. I have worked in healthcare but more in nursing roles, phlebotomy etc. also did a few alternative medicine qualifications (nutrition, stress management)…..seemed a great idea at the time! Now that I am 40 I would rather be stress free and at least moderately contented than being stressed and miserable. I have ruled out now a return to medicine. A few of my friends were my peers at med school, but nobody with whom I could contact regarding this. However, given the fact I still have the title dr, when I get back to the UK I will approach a few consultants who might be interested in listening to our difficult plight. I would love to undertake a retrospective study with long term conditions and look at the course of their illness, maybe with a view to looking at prognostic factors. Some qualitative data would be good to assess patient’s own experiences.
Did I tell you when I saw my GP, he wiki’d dysautonomia with me there….brave man! That’s the worst page anyway, don’t even think it mentions the importance of POTS…etc, so you can imagine the people who have been dismissed due to having a constellation of symptoms…oh it’s just a bit of increased sympathetic drive and anxiety, breathe deeply, take a pill!,
Richard