I am so lost as to what is going on! HELP? Long post,sorry!

Posted , 7 users are following.

Hi Everyone, I am just here for a bit of advice really. I am a 29year old female who was diagnoised with Chiari Malformation when I was around 20, Due to an MRI for extreme headaches.Since then I seem to be getting worse by each passing year. I do have headaches most days, just an annoying headache that is always there, but at time's the headaches are extreme, really painful and it feels like my head is going to explode from pressure, I actually would not call these headaches, as they are so much more and worse then that, If i would be given an option when Im suffering from them to just die instead of feeling the pain, i woulld take the death option, that is how bad they can get, Thankfully though I only get those every other month. I also have  terrible pressure in my head neck and ears, balance, my memory is very bad, inner ear problems, dizziness, fatique, really bad neck pain/ache, sometimes my skull can feel numb to the touch, blurry vision, I feel weak all the time, I get a lot of vertigo, and also anxiety and depression but this is due to feeling ill al the time. Anyway, I went to one specialist who didn't know much about chiari, he offered me injections in my skull which helps with headpain. I declined this as I know my body, and I feel this could make things worse. I then went to a Chiari Specialist in Birmingham, He gave me an MRI and also one with a contrast dye, I have a 7MM chiari, which is not crowded, therefore he tells me that my symptoms are not from Chiari, and he would hesitate to say i am suffering from Chiari Malformatin. This confused me,  i have  a 7mm chiari, and ok my skull isn't crowded therefore i don't need surgery *Which i didn't want anyway, I just wanted answers as to why i am suffering* so due to me not needing surgery, he seems to have no interest in me. I am so down due to all of this, I have been told by other's that the size doesn't matter, any size can cause symptoms, and now after chasing answers and going to an actual chiari surgeon, who is meant to be great, well..I didn't find him great, he just dismissed me and didn't seem interested. I just want to know, if I have a 7mm Chiari, and my skull isn't too crowded, does this mean my symptoms are not from this?? I have been chasing answers for two years now and just get fobbed off sad I am so down due to all of this.

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  • Posted

    Get a second opinion!!!  If you have Chiari, YOU HAVE CHIARI. Any kind of compression of the brain causing it to be squished through the foramen magnum is CHIARI!  Size doesn't matter!! SYMPTOMS DO! Get another opinion and get decompression surgery. The longer you have compression, the worse the symptoms will get. They are not going to get any better and you are experiencing brain damage!!!

    Contrary to popular opinion, DOCTORS DON'T KNOW EVERYTHING!!

    DOCTORS in particular, DON'T know much about Chiari. If you want to find out about Chiari, Ask one of us!!!


    1) To explain this VERY SIMPLY, so that your Doctor can comprehend: 


    b) You put a soft spongy organism in it, like a guinea pig

    c) Guinea Pig starts getting bigger. And Bigger. And BIGGER.

    d) Guinea Pig gets squished. 

    e) Guinea Pig can't move

    f) Guinea Pig sticks one leg out of the air hole in the bottom of

    the box.

    g) With the leg BLOCKING the air hole, no air circulates within

    the box.

    2) Replace Guinea Pig with brain. IN the end, there is nowhere for brain to go. It will keep pressing on the walls until it runs out of room and part goes through the hole. 

    3) Even before part of the brain goes through the hole, it is SQUISHED. So whatever functions this portion of the brain is in CHARGE of, stop working properly!!


    The amount of tonsillar herniation is NOT RELATED TO THE SEVERITY OF SYMPTOMS!!! As your "doctor" can see in the photo, the brain STILL GETS SQUISHED even if there is no tonsil sticking out!! The compression of the brain causes the symptoms!!


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  • Posted

    Hi, like your self I was chasing for answers for nearly ten years! When finally a spine consultant noticed I had chiari and referred me to neurosurgeon, who recommended decompression surgery, you need someone who knows about chiari as it's not well known about.... And I was passed round as no one knew what to do with me, tried meds, injections ect.... Keep pushing till someone knows about chiari. X

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  • Posted


    I'm so sorry to hear that you're going through this. I would say my symptoms are exactly like yours! My herniation is 8mm.

    Was it Mr Flint you saw? He's one of the leading chiari specialist in the? U.K.

    I've just had my cine MRI last week, waiting to be seen again now to discuss the results.

    Why did you decline the botox scalp injections? That could have provided some relief, which now you won't know. I'm also waiting for my scalp injections to see if that can help with the headaches.

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  • Posted

    Hi there.

    I'm sorry you have a chiari at 7mm. You are right it doesn't matter how big the hernuation is it's the symptoms your experiencing which matter. You describe very much what ideas like before I had surgery my hernuation is 8mm. I have had surgery which is hard as the recovery is slow and in some ways I'm suffering more now! I am only 20 post op and everyone is different. You say you don't want surgery and that's ok too but don't rule it out cos your symptoms can get worse such as numbness which is what I have been leftvrith cos once the damagevis done there's no going back but thevdurgery stops you getting any worse. However you font even seem to have a cinultdnt that believed your symptoms are due to your chiari I'm no Dr I just live with chiari and your symptoms ARE chiari related I'm sure! I reflect your decision not to have surgery but you do need neurology to take you seriously and consider a pain clinic. When you next see the chiari specialist print out the nhs and Ann Conroy trust list of symptoms!!! You have a fair few to tick off! Ask if you can compare this lust with your own symptoms. Good luck I can give further advice but I think your first battle is getting them to accept your symptoms are chiari related good luck x

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  • Posted

    Do you have fluid in your spine? If so, go and get another opinion. I had Chiari level I, I had two MDs that said that my explosive, stop you with food in your mouth headaches were not caused by my chiari. I found a neurosurgeon, did an MRI of my spine and found fluid stuck in my spine. This meant that decompression surgery was required. Post surgery is absolute hell, but my symptoms went away immediately. It took me four months before going back to work. It's super aweful, but now that I'm through it...I'd do it all over again.

    all I can say is get to a massage therapist once a week after you have your stitches out to just massage your back..trust me it will seriously help..

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