Hi wonkly,
I am really sorry that you’re going through this, and feel for you that no doctors seem to be taking you seriously; I wish there was something I could do for you to help you.
Firstly, if you are getting to the point of feeling in a crisis or suicidal, there are organisations who can help you- they’re listed in the help section top right of the home page: Crisis/Help Line
Even if you’re not at a real crisis point, it’s still good to know that they’re there to talk to- you’re welcome to vent on here too but sometimes it’s good to talk rather than message.
To answer your question- I don’t know if it would help you to try to explain how bad you’re feeling and to mention that you’re close to suicidal- I know there have been quite a few members on here who haven’t mentioned that but have been desperate and have been referred for psychiatric treatment instead of being treated for a physical condition. I know that heidemt had a real struggle to get taken seriously, and she suggested that it seemed better to net mention the weird symptoms you can get with ES, as doctors didn’t tke you seriously then.
What support do you have from family or friends? I’m wondering if there was someone else who could come with you to help you get taken seriously? Or have you tried that? I’ve probably mentioned it before but if you haven’t tried taking info with you about how your symptoms match ES, and how the angle can be as important as the size with ES, then that is maybe worth a try. Could you get a copy of the CT and use the software mentioned on here to turn it into a 3D and have a look at it yourself?
I don’t think that there’s many doctors in Australia that seem to be treating ES so you’re at a disadvantage with that. If you’ve not tried a Skull Base surgeon / otolaryngologist then that perhaps an option, or if you’re able, you could look through some of the research papers and see if any of the authors of those are Australian and could help. (It’s something I want to do myself to see if there’s potentially any more for the doctors list, but sorry, I haven’t had the time) Is your GP/ primary care doctor at all helpful? And it’s kind of admitting defeat, but if you could get help for pain management from a specialist it might help you keep going. I’m sorry if you’ve already tried all these things. Otherwise maybe it might be worth looking at the list of ‘if not ES, what else?’ things in the ES Info section to see if there’s anything which jumps out symptom-wise which could be worth investigating, although it doesn’t help with being taken seriously…
We have had a few members on here who’ve not been able to get treatment or haven’t had success with surgery, so you’re not alone, but that’s not really helpful to you.
I’m thinking of you, and will be praying for you, Jules
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