If you do not have CSF blockage does that mean that the malformation are not the cause of your symptoms

[T73]

I am very thankful that I found this website.  It is extremely scary to find out that you have very serious symptoms that some doctors can dismiss as anxiety or stress.  I am truly amazed of the lack of knowledge of Chiari malformation!  I  Even at this very minute, finding others with the exact same symptoms, I am in some sort of disbelief.  The first Neurologist who probley never looked at my films told me my MRI was normal.   He sent me on a goose chase of cardiology and by the way my heart is fine.  Long story short, my second Neurologist repeated the MRI and told me I had Arnold Chiari Malformation Type 2 and that it was seen in the findings of my first MRI, but not included in the impression.  I was sent to a Neurosurgeon’s Nurse Practioner who said it was something I was born with but not the cause of my symptoms if I did not have CSF blockage.  They are ordering more tests but if there is no blockage does this mean that I don’t have this?  I am so confused.  Anyway, I guess for me, these appointments of disappointment and frustration left me to almost believe that maybe I was doing this to myself or just maybe I do have anxiety.  After being on this site for ten minutes I don’t feel like a crazy person!  Thank you to everyone!   O B T W, my question was about the CSF blockage.  

[*Stormy*]

Hello!

I've been away on holidays and have just been reading through all the posts :)

I just wanted to comment...

I am from Canada and in a lot of ways our health care in the UK and here seems to be  similar.

In my case, the Chiari was missed or ignored by the radiologist and my NL (who I believe decided not to tell me as he liked the stress dx better). I went for 6 months rapidly progressing w/o a clue of what was wrong with me and no one told me until I finally went to see a NS. So VERY important!!! Do not rely on a NL to give you an accurate view on Chiari....get a specialist!!

I was never given a mm either and I never thought to ask. My NS didn't even seem to be concerned with size, he was more worried about the fact that my foramen magnum was overcrowded and there was an area where little or no CSF was able to get through. Sounds EXACTLY what you are experiencing. So I just wanted to tell you to have confidence in yourself and keep pushing until you get a dr that understands and is willing to help you. If I hadn't kept pushing...I don't think I would be doing nearly well today as I am. My NS dx'd the Chiari and did the surgery within 3 months.

Take care and good luck
Carolyn

[selmaS]

yup....and try to keep calm....stressing can make symptoms worse....and we don't need that ....on top of everything else : )

Keep us posted
"selma"

[taylapj]

Ok I find that a little reasurring it says my tonsils are normal in shape so perhaps that's not so seriouse, so just gotta sort out this obliteration of space in foramen magnum. Lol

[selmaS]

Hi...many times it depends on the radiologist and what they were looking for to begin with and the education they have on chiari....these are their opinion so it matters what they have been taught regarding chiari...if taught that it is an incidental finding, they may be less likely to note the size....

The fact that the size does not really matter can be another reason for it not to appear....it is the CSF blockage and overcrowding that is more important along with the shape of the tonsils.

Hope that helps some : )
"selma"

[taylapj]

Is I common to have the size of the herniation on your MRI report??? Mine doesn't say a size.

[taylapj]

Thanks, i will let you know how it goes, i am due to see her on August the 4th, i will be sure to question what my report says and what i have done is look at the internet at cerebella tonsils herniations, so when she shows me i can point it out and question it etc.

Its just the waiting, today has been awfull pain, head pains, grrrr it's days like THIS when you want the app sooner rather than later huh.
x