4mm Cerebral Tonsil herniation - help

[Dorisnic]

Hi Everyone,

I'm a 30 year old woman, in the uk. Having occasional headaches this year but since July I've had a daily throbbing headache at the base of my skull, which radiates into my scalp and the back of my right eye. In September this increased also to facial numbness, difficulty sleeping, tingling in my hands and tinitus. On an admission to hospital in october a neurologust saw me, felt it was chronic migraines (without triggers) but did an MRI brain. This showed -

Cerebral tonsil herniation of 4mm below the formentum magnum - in keeping with Chiari Malformation.

I saw the neurologist 2 weeks ago, she said her specialist radiograpger has checked it and doesnt consider chiari malformation. Classing MRI as normal, just with a low lying cerebellum.

Traditional painkillers and nerve painkillers aren't easing my pain. I'm utterly fed up as I can't work like this. Functioning on 3-4 hours broken sleep. Neurologist wants me to try Topiramate for my "migraines". As a nurse I'm not keen on this. I'm seeing a neurosurgeon specialising in Chiari next week - my gp wanted a second opinion.

Has anyone experienced similar frustrations?

[selmaS]

  Good luck Tuesday and let us know how the visit goes!

[Dorisnic]

Thankyou for you response. Its awful so many have the same issues. Good to know I'm not alone though!

The neurosurgeon I'm seeing on tuesday is known locally with a specialist interest in Chiari so hopefully I might get some better information compared to the neurologist!

[selmaS]

  Hi and welcome to the Chiari forum.

What you are dealing with and so many of us have dealt with we have referred to as the Chiari run around....we get a DX of Chiari and then told the symptoms are not Chiari related..it is migraines, anxiety, or something else.....so you are not alone in your frustrations..

There are far too many Drs that give that poor advice instead of admitting they don't know enuff to make an informed decision....

If you have a true Chiari specialist they should be able to rule out related conditions , as they have the same if not similar symptoms, they will also know to do a CINE MRI to rule ot a CSF obstruction even with a "smaller" herniation.....many use 5mm's to determine Chiari...but Chiari is not the herniation but a malformation of the skull which results in the herniation,,,,and it is the width not length of the herniation that can cause issues in many cases.

I had a 4mm and 6 mm herniation ( we have 2 cerebral tonsils) and I also had a partially retroflexed odontoid which made space for CSF to flow more difficult....so you need a Dr taht looks at everything and not just the herniation.