Chiari Online Support Group

My diagnosis story, need som advice please


#1

Hi, my name is Rhea and in 19.
Last week I received a letter stating that I have Chiari, the letter also stated that they had discover it in 2010 but had never told me. I am now being seen by a neurologist urgently because of my symptoms. I had an MRI in 2010 and one in 2014 aswell. Both of these scans were for symptoms I was experiencing, though I had no idea that they were symptoms at the time, such as severe head ache, dizzyness beyond belief, etc. However the nhs failed to tell me. I never heard anything back in 2014 so I assumed that there was nothing wrong. Now I have been told that I have Chiari and I just feel so so helplessly angry. So much pain could’ve been saved if they had just told me 5 years ago, or at least managed. I just would like people help on how to come to terms with this. And also if anyone has any experience in taking legal action against the nhs.
Thank you
Rhea


#2

Hi, I'm really sorry that happened. You might get more views and relpies if you pst your questions in discussions.

I saw someone saying that blogs were best for tracking yourself.

When I was diagnosed, I was 16 or 17, alone with the doctor and was told that Chiari most likely is the cause of my symptoms and there was nothing to do. So I lived for around 8 years trying to be like others, not understanding why I couldn't. Then I remembered about the diagnosis(I actually didn't know what it was called, I just googled " slipped brain" and found what it was). The first doctor I saw, after I figured I had Chiari, was really rude, aggressive and said, I just had depression.

It's been hard for me to accept Chiari, but I think I finally have and I have to give a big thanks to this article https://www.psychologytoday.com/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness

and this one http://myheartsisters.org/2010/10/29/dr-aletta-five-tips-depression/

Hope this helps!


#3

Hi, thank you for the reply and advice. I’ll try posting in a discussion. I imagine it’s very hard to have a doctor just disregard all your pain like that. I’ll read those articles this evening, thank you for recommending them to me, hopefully they’ll help. It’s such a shock because I’m only 19 and I feel like my whole life has been mapped out for me now. Even though it’s a relief to have a diagnosis, before I was made to feel as though I was exaggerating or being dramatic, I’m struggling to come to terms with it.


#4

I know how it feels. I had big plans for my future, I knew what to do to achieve my goals, but my symptoms kept holding me back. Then this summer I went from being tired all the time, but still being able to work and study, to being extremely exhausted and not being able to do anything. That completely crushed me. I felt so lost! And then a member said, it looks like I'm going through grief. So I read about it and understood, getting a chronic illness as a diagnosis is like loosing part of you. The future part of you. For 3 or 4 months now I'm mostly watching tv. The smallest things, like cleaning home, are too much now.

I've had time to heal mentally and now the future doesn't seem hopeless anymore. Chiari doesn't take our future away. It just changes it. Just let yourself process this new info you have, your own thoughts and emotions, heal from the shock and then continue creating the best life you can! :)

btw, I just turned 25 last month.