Hi, my name is Rhea, I'm 19 and from England.
Last week I received a letter stating that I have Chiari, the letter also stated that they had discovered it in 2010 but had never told me or my parents. I am now being seen by a neurologist urgently because of my symptoms. I had an MRI in 2010 and one in 2014 as well. 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
Hello Rhea
Dealing with what seems like betrayal and poor physician care is difficult indeed on top of still dealing with the actual Chiari symptoms themselves. I too had a history of radiologists with inadequate skills in diagnosing Chiari and then doctors who dismissed the Chiari findings as insignificant. You will hear variations on this story again and again when it comes to Chiari. Unfortunately, this is not something you are alone in! Your experience of delay is still not right nor is it something that Chiari folk need to go through as a right of passage.
I was never told about the Chiari findings on MRI reports, as well, and I did not discover it until I glanced at an MRI report upside down in an appointment with a clueless specialist and then went on to the rigamaroll of reading my own chart. (My symptoms were classic Chiari and she had a Chiari finding in her hand and was unable to put it together!).
In my journey with Chiari, it is apparent that it is not a well-known condition in the medical world and professionals with inadequate knowledge bases abound. I tell everyone with long-term health concerns to keep a medical journal of their own and place copies of all tests in it, review them, and understand them. Follow-up with all appointments to confirm that referrals are received, discuss all meds with your doctor AND a pharmacist and get a second opinion if you have any concerns. Over- or wrong medication is common with vague chronic conditions like Chiari. Medical professionals and the systems they work in are incredibly busy and miss details. Being your own advocate is essential in continuing your journey with Chiari. You are the most invested in taking care of yourself. Having a trusted person with health care experience is helpful if you have that resource. They can provide insight into navigating your healthcare system.
Not being in the UK, I cannot address your question on legal action against the health care organization. Having worked in the health care system combined with having to go through the legal system with an unrelated matter over our house fire, I would be likely to say that tackling lawyers and courts may not be the best place to put your energy resources. What are your motivations for going that route? Is there a complaint system that you could access? Your life will be challenging enough in dealing with Chiari and sourcing out the help that you will need.
I definitely understand your anger and frustration over this situation. For a long time your concerns have not been addressed and even dismissed. Counselling for the injustice of it all and now dealing with a tricky beast may be helpful. Good luck with your journey.