Chiari Help

[Spirit2375]

Hi there. I don't know if you are able to help me at all but its worth a shot. I came across your website whilst researching Chiari. I have suffered headaches since age around 16. I have been diagnosed with slight scoliosis when I was younger, also cervical spine abnormality, was advised both would have been present at birth. I had a CAT scan of brain in my 20's which showed no significant findings at all. So as I was advised there was no reason for my headaches, I stopped trying to find out. Fast forward to now, aged 41. My headaches are daily, I wake with a headache, I go to sleep with a headache. Severity varies, but I have to just try an "get on with things", as life goes on. I feel nauseous, sweaty, dazed, confused. Other symptoms I an having are short term memory difficulties, 'losing words', when I clearly know the word I mean, I cant seem to say it, constant pressure/ache/pain in the back of my head and neck, muscle/bodily stiffness and aches in left side of my body, clumsy, dizzy, vision disturbance (trouble focusing), chronic tiredness, aversion to loud noise etc. These symptom  s have worsened in the past 4-6 months. I avoid activity as this only makes the pain worse. It's obviously having an impact on my life.
Recently my partner and father urged me to get back to the doctor and get it checked out again. The doctor I saw didnt really listen to my symptoms, just that I have had long term chronic headache. He sent me for an MRI. I waited a week to get that done.
I got the scans and, out of curiosity took a look myself. I briefly studied the brain at TAFE, I knew a minute amount about the brain and its anatomy.  I noticed the bottom part of the cerebellum looked quite large and it is pointing downwards. I am obviously not a doctor, but something said it wasn't right. So I looked up normal brain MRI images, this confirmed what I thought, that my cerebellum tonsils (i didnt know thats what they were called at the time), seemed to be pushing onto my spinal cord, and kind of going down into the cavity a bit. As I continued to search, I came across an image that looked very much like mine, and it named it as being a "cerebellum herniation" or Chiari. I had never heard of this, so I read more. Stories and scans from normal people like myself, suffering headaches many years and not getting any answers. They reveal that they have been through many doctors, specialists and scans and tests, until finally one day someone actually listened and diagnosed the problem. It seems to be, form my limited research,  a diagnosis that many medical professionals are not aware of, or they brush it off as not being important.
I visited my doctor today, to get the results of my scan. It came back that I have "four very small high FLAIR signal foci within the deep white matter of the brain, of questionable significance and number in this demographic".
I wasn't told what this could mean, but the doctor is now sending me for an EEG with a neurosurgeon. I asked him about the Chiari, he said if I had that I wouldn't be alive, it means death. I told him that I had been on some forums discussing the matter from everyday people, and they aren't dead. He disagreed with me and said its not possible that I have this.
Now, I don't know if I have, or if I haven't, but from the symptoms and descriptions I have read on Chiari, it makes plenty of sense to me that this may be my problem. I know I don't know what I'm looking at, I'm not a radiologist, but I need to know if it's a possibility.
I'm still wondering what the spots on my brain are, but I don't know if that is what is causing constant pressure, pain and stiffness, at the back of my head/neck.

Could you please advise me on where to get more help on this, or who to speak with, or someone that has experience with this that I can show my MRI to. I am located in Queensland on the Gold Coast. Any help or advise would be much appreciated. I'm tired of living in constant pain and not having any answers.

[selmaS]

  Hi Spirit2375 and welcome to the Chiari forum,

  Unfortunately there are more with Chiari then informed and experienced Drs.
There are several types of Chiari...the most common one is type one....and there is one that is more widely known about and is noticed at birth...and with that type most do not survive....so, this must be the only chapter your Dr hear about in med school.

Chiari symptoms cycle and can flare...they can leave for long or short periods....so it can be difficult to DX plus the symptoms change as well making it even more difficult to DX.

We do have a few names in a thread for your Country....use the list to research the Drs...and if you find any not on our list that is well informed let us know so we may add them

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-Australia/show/1314732