Chiari Online Support Group

Newly Diagnosed. looking for Chiari specialist London?

#1

Hi
I was recently been diagnosed with Chiari type 1 in april 2018. I was sent to hospital with severe headaches in the back of my head which they thought may have been a bleed on the brain. I had CT and MRI scans where they found the chiari. I have never been told the size of the herniation I have only been told that it is not that bad on my scans and the neurologists were not concerned by it. even though my symptoms are still persistent???
I am under a neurologist and was given amitriptalyne as a preventative for “migraine” headaches my neurologist and the doctors in the hospital and my GP even with numerous trips back and forth all say that the headaches are unrelated to the chiari. This is highly frustrating as they disregard all other symptoms of chiari too. My other presenting symptoms are:
visual disturbances/blurry vision/eye pain
dizziness
balance issues (if I stand too quickly)
onset headaches when coughing, sneezing, bending over or blowing up ballons etc
neck and shoulder blade pain/ tightness
Tightness in my head/ neck like someone is squeezing
light and sound sensitivity and irritability
Tinnitus

The amatriptalyne was causing side effects so I am now taking Topamax which seems to have improved the really severe headaches although I can still always feel the pressure feeling.
I am becoming really frustrated and stressed out with the situation and would like to know if anyone has had any experience of a chiari specialist in the London area preferably NHS that I could be asked to be referred to? I would just like to get a more professional opinion on my case and feel that I am being listened to based on my symptoms and not based on the size of the herniation and what my scan looks like.

Thank you for reading
Lisa

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#2

I would suggest requesting a consult with a neurosurgeon (not the mysterious chiari specialist!). Discuss who can see you sooner. Your neurologist will have relationships with several neurosurgeons and prefer those. But to convince them…

Ragiologists are not trained in determining the impact of herniation. They do not report on the horizontal view of the foramen magnum - just the sagittal. Neurologists tend to read the radiologist’s written report and do not review the actual images. Simply state that you would like to review both actual views of your MRI with a neurosurgeon. Length does not correspond with levels of symptoms and neurological involvement.
Ask again…

Brush up online with what those images look like prior to seeing the neurosurgeon. Good luck with the tricky navigation.

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