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.  

[LisaRiu]

Hi there,
Question relating to your medical records.
You can get in contact with the medical health records dept of the hospital that did your scans and request all the records you want - even the scans. They will send you a form to complete which asks which records you are after. There is a cost, but it's not too much. I know this because I used to live in the midlands, but have since moved to Spain so had to request the info.
I have recently been diagnosed with Chiari type 1 with syringomyelia and am just going through the 'runaround' at the moment. I had my mri done in the uk shortly before I moved to Spain.
Hope u manage to get your records without too much trouble.
Take care.

[rod44]

Yes they will give you a CD copy of your scans.

[taylapj]

So can I ask for my actual scans?

[rod44]

I agree with selma, you need to be careful. You can request a second opinion I should imagine however you will need to see this doctor in August first. I would strongly advise that you get copy's of your medical records and all test you have done, you should get them under Freedom Of Information laws. If you need to travail for treatment you will need them.

Ray    

[taylapj]

Thanks Selma your so knowledgable about all this, today is a not so good day laid up on the sofa, managed to get to work but by the time I got there the sharp pains all over and numbness was to much so came home to rest, what I just don't understand is surley if your a neurologist you should know of this condition??  That's crazy lol or at least not accept parts of the brain being in the wrong place

[selmaS]

HI...I have heard of a chiarian having TIAS after surgery....but she felt it was the result of HRT.

Obliteration = annihilation: destruction by annihilating something ....nothing left.

I think it is wise to be careful at work....

Sending prayers for ur brother and u that u get the proper care u both need.

"selma"