Thursday, 1 November 2018

Chiari Anger

OMG! I was just looking at my notes to see if I knew what type of gadolinium I had with the private MRI - at the time when I found out I had the tumour. (The letter doesn't say and this topic is on another blog post here )

...but I re-read the letter from the neuroradiologist that I was given after the scan and it says

 "there is cerebellar swelling with protrusion through foramen magnum .." 

So I google it, to find out it's basically the same as Chiari malformation (although obviously my protrusion was caused by the tumour) ....  

"Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM)." 

see more at I am sitting here f'ing livid and even more annoyed with the health ombudsmen!!!😤😡

I had GIVEN my GP a letter with all my symptoms also saying I was concerned I had Chiari (as well as a Brain Tumour!) as my symptoms were so bad when I strained or coughed etc and I had found out this was linked to Chiari...

MY letter to my GP said this..
"Can I rule out?
Brain tumour or problem?
Chari malformation? neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected" 
(my full complaint letter is on this page)

So... I basically gave TWO doctors ALMOST ALL the symptoms of Chiari AS WELL as a f'ing cerebellar brain tumour (the only thing I had none of was vomiting) 
AND I had ALSO given the last GP these symptoms on paper to read after I had left surgery, so she knew what to refer me to the Neurologist for.

I had also asked two of the doctors I had seen in person (and again put on paper with the last doctor) if I had 'a brain tumour or Chiari'... both said "not likely" along with a sarcastic 'don't be stupid' smile ... but I f'ing did have a brain tumour AND Chiari!!!😡🤬😡🤬

Yet even with this this final GP having this information, she only referred me as NON URGENT to a neurologist... (of which the appointment would have been after my operation date if I had not had a private scan...)

... I am totally disgusted with the health service and ombudsmen today...
I will be calling them tomorrow to see WTF is happening, if anything... 
THEY CANNOT keep telling me the GPs didn't fail me... 
its f'ing lying to protect them if they do... 🤬🤬🤬

MRI of my cerebellum before brain surgery

UPDATE after the call to the Health Ombudsman - 
Apparently they are still reviewing my case and right now the person dealing with it is away as having an operation, and they will be back next week. 🙄
They will be called again. 

Also I will be asking if my case has anything to do with why the final GP I saw is now "Registered without a licence to practise" on the GMC website??


  1. Jo, I understand your frustrations and anger, after all you have been through, and I sincerely hope you gain some redress. I understand some of the spiritual side of your nature, and your love of various kinds of music, from reading your excellent book. I came across this musician Christopher of The Wolves about 10 years ago, and kept in contact with him for some time, I even did some videos of him busking in Oxford. Google him. You may like this. I don't know if you know anything about Reiki, but that too may help.

    "Reiki Healing Music by Christopher of the Wolves"


    1. thank you Tony... will take a listen. and yes in fact i just had my 2nd reiki treatment today! the first time i went it really improved my balance and i felt more grounded :) ... slowly getting there! x