lunarainbows
Senior Member (Voting Rights)
Is there a link where you posted it? I would like to read it if that's possible. Thank you in advance.
Hi Grigor: https://www.s4me.info/threads/meped...acranial-hypertension.9818/page-2#post-187916
Just a note I didn’t get surgery - I didn’t get that far! I have severe M.E, and it caused me a lot of distress because I’m in the UK and essentially there are no avenues to getting this diagnosed or treated other than through private, very expensive means - and on top of that, even if people get it somehow diagnosed - having to travel very far away to another country to have risky surgery.
I made myself very unwell just through researching it all and then just travelling to get the MRI, because I felt I must follow this avenue, following Jeff’s website and Jen’s story. It caused a huge amount of anxiety and ill health when I was desperate, as we all are. I’ve written in the thread why I think those who are advocates should take more responsibility in the way they talk about things especially when there is no research yet into this, except a handful of these surgeons performing surgery. Because we are all desperate and vulnerable patients.
I think there’s a big difference between saying: “I got better, I did this surgery and afterwards I was better, however I don’t know why that is and please wait until there is further research before looking into this”, compared to “I got better, I’m in remission, these are my theories/facts as to why ” and then continuing to write about medical things in this way - which; I’ve mentioned in my other post, many people take as fact and then act on.
Last edited: