1. Community
  2. Brain and nerves
  3. Headache

Chiari 1 - normal CSF flow but with symptoms

Posted , 4 users are following.

viktoria56472
viktoria56472

Hi all,

I have been diagnosed with Chiari 1 (7mm herniation of tonsils) one month ago. The MRI shows that the CSF flow is normal and no compression phenomena are found in this area.

However, since I was 17, I suffer from vertigo and extreme headaches that have lasted 5 years in total so far (yes, 5 years non-stop). I have balance problems, cognitive problems and memory loss. My right hand and leg have gone numb and weak from time to time. Chronic fatigue is also another big problem. Symptoms are exacerbated when I have those tension headaches that feel more like neuralgia. Once I had a crisis that affected the right side of my brain and body and hit very hard my trigeminal nerve.

I do not have the typical Chiari 1 symptoms (cough headache, neck or shoulder pain).

Most doctors say that my symptoms do not have to do with Chiari 1. The best doctor I have been so far said that CSF flow may look normal but sometimes my brain may swell and block the CFS flow causing all those symptoms.

Does anybody here have normal CFS flow and broad foramen magnum but still have extreme symptoms?

I attach a photo of my Chiari.

Your opinion will be highly valued and appreciated!

I am almost invalid. I am 29.

0 likes, 3 replies

3 Replies

  • Guest
    Guest viktoria56472

    Posted

    i don't know what to  say except sorry

    sorry that u are experiencing any pain 

    we are all here for you

  • matt01104
    matt01104 viktoria56472

    Posted

    I have been reading posts in these chat rooms for months and have never felt I had anything to contribute.

    I have several chiari symptoms including constant headaches, constant neck pain, numbness in my hands and left toes, memory loss, lack of focus, balance problems, and the newest addition passing out occasionally when I cough.

    I saw a neurosurgeon yesterday for the first time and was told that I have no csf blockage.

    I am at a total loss and have no idea what to do now.

    I have had a MRI with contrast but not a cine MRI. He referred me to a pain clinic and a neurologist for chronic headaches

    While I am so sorry for you and your struggle, I am glad to see I am not alone.

    Please keep me posted on your fight and I will do the same. I wish you luck.

  • brigitte90
    brigitte90 viktoria56472

    Posted

    Hi Viktoria, I am also in the same predicament, though I hope by now you have found help. My plan is to see a nueorologist and then just keep searching for nuerosurgeons who will operate. I feel it is important to find nuerosurgeons who specialize in Chiari and also to be pushy and persistent. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.